Decisions

Cant believe I'm posting pictures of my body parts
on the Internet but a good point of reference
 to look  back on

Two weeks in on Enbrel and my 3rd shot was yesterday, self administered under the supervision of the Rheumatoid Nurse, it went without a hitch and I was surprised by how little it hurt. I’m on my own now and will be giving myself the shot every Thursday. I have an appointment with the nurse in 3 weeks to assess how well she thinks it is working for me.  Medication this week 50mg Enbrel, 2.5mg prednislone daily. No painkillers.

This has been another good week for me although now the inflammation has mainly gone from my poor joints I am left with a few areas of discomfort that are highlighted by the lack of pain in other areas. I have always know that I have some joint damage from years of having no meds at all and am now not sure what is residual swelling and what is damage. My wrists are still a bit uncomfortable …not ouch painful but still there and my right knee that I have heard grinding every day as I walk up the stairs, although no longer swollen, has a distinct twinge in it.  I have a vague tinge of regret that although I am feeling really good there are some things that I now cannot change.  And this brings me on to the next subject that I have been thinking about all week…Decisions...when is it time to take which meds or switch meds.

The Decision on when to start medication or indeed what medication to take is one that hits RA patients hard, and one that I myself have battled with over the past few years.

When I was first diagnosed in 1988 the outlook for newly diagnosed RA patients was grim there was a regimen of often toxic drugs that might slow the onset of crippling pain, but not for very long.  Most patients would first receive either steroids or non steroidal anti-inflammatory drugs (NSAIDs), but since these did not slow destruction of the joints, Doctors would eventually prescribe gold or other agents believed at that time to modify the disease process. A quarter century ago only perhaps 10% to 20% of RA patients were managed by specialists, the figure is now likely above 90%.

I was not under a rheumatologist for many years after my diagnosis and I chose not to have any treatment.  I controlled my pain as best I could with Ibuprofen and now I have joint damage which impacts upon my life and I have to question my own decision. However my options in those days were limited and the medication choices I had at that time may well have not helped me to avoid the damage. So did I make the right decision?

It wasn't long after my diagnosis that methotrexate replaced gold as the go-to drug for inducing symptom remission or at least to stabilise disease in most patients, it was a drug however that was not offered to me or discussed after my initial diagnosis and I feel that even if it had been I probably would of refused at that time. Again..would that of been the right decision?

I know that starting MTX is a huge leap of faith for many patients , I tried it in 2009 and could not tolerate it, there are not many people that escape the side effects of this potent drug the most common of which are nausea, stomach pain, headaches, tiredness and brain fog to name a few and its label includes a dozen "black box" warnings, although these are mainly concerns at the higher doses used in cancer therapy – About a third of patients still show disease progression. Looking back again I gave up on this drug because of the side effects but  I am now in contact with many people who have continued on this therapy and just accept the side effects as part of the treatment. But should we have to accept a treatment that we believe is helping on one hand but is debilitating in its own right on the other. Should I have battled through the nausea fatigue and feelings of detachment that it imposed on me for over half of my week. Many patients are left on this regime because it is ‘helping’ their RA but are battling weekly with its disabling side effects. Was my decision to ‘give up' the right one?  There are of course many other drug options and I am merely rippling the waters of this very emotive subject.

The breakthrough for treatment options came in 1998, when two biologic drugs targeting the cytokine known as tumor necrosis factor (TNF) were launched .These were infliximab (Remicade), a monoclonal antibody against TNF, and etanercept (Enbrel), a soluble version of a TNF receptor protein, both of which sop up and inactivate TNF in circulation. There are now many choices of Biologic therapy apart from the TNF inhibitors these include inhibitors of T-cell costimulation, or B-cell inhibitors, or IL-6 inhibitors, or IL-1 inhibitors. Many more drugs are being developed, some of which are oral."

The problem is each patient is unique and it is almost impossible to know up front which drug is best for each individual patient. There is a lot of 'trial and error' to find the most effective therapy. And then there's the question of do we want to take them and when is the right time to start and for those people with coexisting medical conditions the choices and decisions are even harder.  Some people are happy to be led by their Rheumatologist and will happily take whatever is prescribed for them others, like me, challenge every option that is put forward. Neither is right its just a different approach with a common aim…remission.  In the UK, to a certain degree, the decision which medication to take is made for you by the NICE  protocol, you have to have tried and failed on 2 DMARDS to be put forward for approval for Biologic’s. But surely this means that if MTX is working for you in terms of joint pain and swelling but isn’t as effective in the long term as biologics in preventing joint damage you will be stuck on a therapy that is not the best long term option for you.  It is also very much down to cost, when I was first considering Biologics I was told that Cimzia was the drug of choice, having researched I discovered that it was in fact one one of the newest and was being pushed by the NHS as the Manufacturer was offering it to the NHS free of charge for 6 months. I asked for my case to be put forward based on my DRESS experience that I wanted to try Enbrel as it had the longest safety data and was generally well tolerated.  I have only been on Enbrel for 2 weeks and have seen a huge improvement, not only in my joint pain but my well being. Everyday no longer starts with stiff swollen joints and a feeling of coming down with the flu which would only subside by lunchtime if I was lucky after a cocktail of painkillers. But again the decision to start this therapy has been a tough one.  I am scared of the side effects, not from the odd headache or a possible injection site reaction but from the increased risk of serious infection, cancer, MS, TB and a few others . I have been made aware of the risks and I have made the decision -  I do not want to live my life in pain and misery, so I have taken the gamble, and if it carries on working for me I will have my life back. But also for me, now I have joined the ‘Biologic Brigade’ I have made the decision that if Enbrel does not work for me long term, I will not be adding in another toxic medication, but having tasted the benefits I will ask to switch to another Biologic.
Is this the right decision?

For my fellow sufferers in other parts of the world I know the decision is not quite so straight forward, whilst I do not pretend to understand the complexities particularly in the USA I have heard from many people whose Insurance doesn’t cover certain drugs or they cant afford to pay the proportion not covered by insurance or they simply don’t have any insurance. it means that choices are very limited. This lottery means that a change of Insurance Companies could see some people having to delay or stop treatment, risking loss of disease control that may be hard to get back and some may never have the option to try something that could change their life. So not only do they have the battle of what to start and when, but can they?

How do you decide when to start treatment? How do you decide which drug to start on? How do you decide how long you stay on a drug before deciding it isn't working.  How long do you stay on a drug before you decide  the side effects are intolerable? How do you decide which drug you would like to try next? How do you decide whether to try combination therapy.  Yes the Rhuematologist is the expert and there to advise you on the best course of action to prevent disease progression...but ultimately the decision is yours!  Risks versus Benefit!

I do wonder however if I would feel differently about my current decisions if I was younger or even if this was my child, these medications are without  doubt toxic and I think I would worry about the risks of taking them for a long number of years, they are too new to have any real long term safety data. If I was 25 years younger would the worry of the longer term side effects outweigh my worry of joint damage and organ involvement - I don't know.  That decision if you are making it on behalf of your child must be agonising.

Many people of my generation are not nearly as savvy about this disease and treatment choices as the newly diagnosed of today. I recently read an interview from 2009, not a very informative one, with the novelist Martina Cole who has had RA for many years and the article mentioned briefly Anti TNF and said about Martina. ‘It is a treatment option Martina plans to investigate if her condition deteriorates further’. For many of my generation that just about sums it up!

Also, I have been ‘one of the lucky ones’, as my Rheumatologist tells me, most people who have had RA for nearly 24 years without any meds would be somewhat disabled, many unable to walk unaided or use their fingers and hands and being 'one of the lucky one's has undoubtedly influenced my decisions.  My attitude to medication for years, like Martina Coles, was that I would take it ‘when I needed it’ I did not see or understand  the bigger picture.

I know my views stated above may be fairly simplistic and that many cases are very complex and require a multi faceted approach,  I can only share my thoughts based on my illness and the decisions I have made. I wish you all  the luck in the world in making the ‘right’ decisions for you.

Expectations

My Granddaughter Ellie will be one on 27th February,
I felt so good last week that I spent hours and hours on the computer
 puting together an Apple iphoto book as a record of her first year
 ...this is the picture I used on the front cover

This past week has been a good one following my Enbrel shot last Thursday. I woke up on Friday morning with no stiffness, no fatigue and very little pain.  The trouble is I don’t know whether to shout out loud ‘hooray’ or whether this is just coincidence..always erring on the side of caution me..The week progressed much the same and life has improved I’ve found myself doing more and more without thinking about it ..always a sure sign that your feeling better.  By Wednesday I had a slight twinges in my hands and wrists and was actually looking forward to my 2^nd shot.  My meds this week had been 1 x 50mg Enbrel shot and 3mg Prednislone a day.  No painkillers.

Thursday morning at 8am I had a phone call from the Rheumatoid Secretary to say the clinical nurse was off sick so my appointment to supervise me administering my 2^nd shot was cancelled…..just like that!  Disbelief, panic, desperation all set in…I must have my shot..absolutely must…I was assured that waiting a few days would not affect the efficacy of the meds.  This however was not the point to me I had made this conscious decision to start Enbrel and psyched myself up to do the shot and needed to do it that day.  I phoned by GP surgery in a blind panic and one of the nurses saved the day, she squeezed me in after surgery.  I duly arrived at 12noon expecting her to give me the shot but she handed me the click pen with a ‘come on now, you can do it’.  Actually it was ok …the end of the click pen pushed in far easier than I thought and the hardest part was pushing the button..deep breath…yes it stung …but 10 seconds, that’s all..worth it if it works.  As of today I still have some slight pain in wrists …but not enough to make me reach for the ibuprofen.


That brings me on to the next part of this post…expectations.  What are my expectations and are they realistic.  Everyone seems to have a different idea on whether a med is working or whether they are in remission, by that I mean clinical remission.  

A recent article in Arthritis today  gives the following criteria:  http://www.arthritistoday.org/news/rheumatoid-arthritis-remission115.php

One definition says to be considered in remission, patients need to meet four goals:

1. One or less swollen joints

2. One or less tender joints

3. An assessment by the patient that on a zero-to-10 scale, the arthritis activity is one or less

4. A blood test showing little or no inflammation in their levels of C-reactive protein, a key biomarker of inflammation

Whilst the American college of rheumatology list the following:

http://arthritis.about.com/od/arthqa/f/remission.htm

The American College of Rheumatology (ARC) classification criteria for determining clinical remission include:

1. morning stiffness less than or equal to 15 minutes

2. no fatigue

3. no joint pain

4. no joint tenderness or pain on motion

5. no soft tissue swelling in joints or tendon sheaths

6. erythrocyte sedimentation rate less than or equal to 30 in females and 20 in males

My expectations are high...my goal is remission, maybe that is unrealistic but I would like to be able to live my life without constantly being reminded by pain, stiffness and fatigue that I have this illness.  However in reality I have had RA for 23 years and of course have some joint damage, my right wrist is partially fused and my left is trying to join the party, my metatarsals in my feet are damaged and so I often have some foot pain.  Now, again looking at me I use my hands perfectly well and walk just fine at a brisk pace, unless of course I'm in a flare, to the casual observer I'm fine. But my point is that with this amount of joint damage I am not likely to meet either of the above criteria to say I'm in clinical remission.  But does that mean I wont be? Does that mean that any one with joint damage cannot achieve clinical remission?  And then again, should I lower my expectations to avoid disappointment if this drug does not live up to the hype?  Dont get me wrong the most important outcome is that I feel well but somehow by joining the remission club I would feel like I'd won.

Now for me if in 3 months time I still have pain and swelling on Enbrel I would consider it was not working.  Would I want to add another highly toxic drug to make a cocktail....no....I dont think I would, maybe I'm not brave enough, I would prefer to try another in the hope that I could achieve some sort of remission on monotherapy.  Surely double the toxicity..double the risk.  I may be totally wrong on this, this view is just my own and that may well change as I tread the boilogic path, who knows.  I know that the general concensus is that Anti TNF therapy works best in conjunction with Methotrexate but for me that is just a pill too far.  I know many people reading this will be on combination therapy and I am not saying your choices are wrong...you made them for your own reasons dictated by your own health and disease activity and therefore they are the right choices for you in your bid to beat this debilitating illness.  I have been afraid of every single medication I have been prescribed for this illness, justified I feel by my reaction to sulfasalazine,  and I know that when you get to the point that the pain is just too much to bear in reality you will try anything.....

Please, please, please leave your comments, tell me and others what you think and what your experiences are it is only by sharing our own thoughts and stories that we will all learn and become educated enough to fight our own battle against RA.

Biologics and Beyond

This is the start of something new for me, the beginning of my treatment with Biologics.  I don’t know what to expect or what is going to happen but I know that I need to take control and deal with this disease head on.  I no longer want to live my life in pain, a life dominated by this disease, I want to be the person I once was…I don’t know if this is possible but I am going to try.  I am going to update my blog every week as I undergo my Enbrel journey and I hope that my experiences may help others.

Yesterday...feeling apprehensive!

Yesterday I had an appointment with my Rheumatologist . It was ok…nothing out of the ordinary, my CRP is up at 39 but my ESR still only 5. The joints in my hands, wrists, feet and knees  were painful and swollen.  We discussed starting Enbrel in light of the fact that I have had  a sore ear and a slightly sore throat that has lasted for months but isn’t infected.   He said unless I was ‘ill’ (and he said ‘you look absolutely fine to me’) with fever and cough or real congestion, to go ahead. We discussed my sore ear  further and he said I had good movement so didn’t think it was RA related but there  could be some bone erosion,  OA possibly,  so the first step a dental Xray and if that looks OK when he sees it he will order a CT scan to see what’s going on.  I had the Xray yesterday and am now waiting to hear what’s next!.  I asked him if my expectations of being able to live a pain free life were unrealistic and his answer was that it cannot repair joint damage so they may always hurt to a degree but for some it is very successful, some part successful and for some it doesn’t work.  This I already knew but I told him that I had read about people being in remission for years on this drug…and I wanted to be one of those people.....  He smiled….

Frimley Park Hospital looking scruffy -
 but it is undergoing a multi million pound refurb!

This morning I felt worse than I have for ages, maybe because I was out last night with girlfriends and am now paying the price…I wasn’t late and only had 1 glass of red wine.  Although I have attempted Enbrel twice before, (never having got past one shot),  I felt very anxious about it today I think that is because of the allergic reaction I had to Amoxycillin over Christmas. It has left me feeling very vunerable yet again!.  Symptoms this morning were  an overwhelming feeling of being unwell, general flu like symptoms and I think a few imaginery ones in there too, kept thinking I’d got a cold, and that my mild sore throat I've had for ages was worse and I even asked my daughter if my voice sounded funny!   Joints not good either, both hands swollen and both wrists and knees swollen and sore and feet as always are killing me. My ear problem is continuing to irritate me although that feels marginally better this morning.  I tried my new neti pot yesterday, not sure I really like that feeling of water up my nose but I will continue to use it to see if it helps.  This level of anxiety is not good for me and I was trying to have positive thoughts but I found it very hard.

Swollen left wrist today

Swollen knees today

My anxiety rose as I drove to the hospital and I even shed a tear when my daughter phoned to wish me luck…don’t ask what was going through my mind or indeed what I thought was going to happen.  Those of you reading this who don’t know me personally are probably thinking I’m an emotional mess, whereas in reality I’m a quite ‘together’ person and most people perceive me to be strong and in control!  I can’t quite fathom these two halves of me.  

My Enbrel shot

I arrived in clinic with my Enbrel in my pocket my anxiety obviously showing as the Rheumatoid Specialist Nurse asked if I would like her to administer this injection, much to my relief, I agreed with the promise that  I would do the 2^nd one in a week’s time.  She cleaned the area on the top of my thigh with an alcohol wipe and then she told me I had to look or Id never know what I was doing.   She removed the end of the pen, showed me the liquid within pressed the end against my upper thigh and clicked the top.  Ouch….boy did it sting…but it was short she counted to ten and it was over.

I left the clinic with a spring in my step and an appointment for next week at 11am…it was over and I felt surprisingly good about it. 

Back in the car and on my way home I thought to myself……No Barbara this is not the end - its just the beginning….I’m full of hope!  

Beginning of a new era - I’m a blogger

Well who’d of thought  it, up until a few months ago I didn’t even know what Social Media meant. Yeah sure I’ve got a facebook account that I never really use and I’d heard of many others including Twitter and even had an odd look,  then after reading  an autobiography of a TV personality who had RAD I followed a twitter link to say how much I’d enjoyed it and hey presto I’m hooked!  This blog has come about from several angles, firstly for me….I feel a need to document my illness in order to come to terms with it and face the future, a place to record what has happened and will happen to me. Secondly I have been encouraged by my fellow tweeters to share my story and lastly I  am about to embark on my first Biologic.  Starting any new med is a huge hurdle for most of us, full of doubt and fears and sprinkled with hope, but Biologics seem to be the ones most people fear the most.  That includes me and my hope is that as I tell my story and share my Biologic journey with you it may help in your own quest for remission.

I see this as a place to share  - not at this stage with friends and family – but with my fellow RAD sufferers….I hope as time goes on and I grow stronger I will feel able to share this with those closest to me, their love and support is never ending, but this is something I need to do on my own,  so for now I want to remain ‘anonymous’.

I will be starting Enbrel next week but before I share this new experience with you I need to fill you in on the past…I think this will be a kind of therapy for me…I have 23 years to cover, and as I have started writing this has it turned more into a book than a blog so I apologise if it's too long, but you cant tell half a story! Looking back I think how foolish have I been, was I weak, why did I deny my illness for so long - I'm sure many of you will be saying as you read this story 'for heavens sake pull yourself together woman' and thats exactly what I am trying to do.  I have split it into several posts to cover the last 23 years and have tried not to make it too long. I am going to include photos, I want to be a 'real' person not just some words on a blog!

Summer 1988 - The Beginning

My daughters Carley and Lucy who are now 28 and 23 with Granddaughter Ellie

Summer 1988 and I was a 32 year old healthy young woman with my whole life ahead of me, my daughter Carley was 5 and my new born, Lucy, was just 6 weeks old. When the first pain started deep within my hip I brushed it aside,  but within a few days my wrists started to hurt and my whole body felt stiff when I woke in the morning, not thinking it was anything serious I just carried on.  My left knee promptly followed and was swollen to twice its normal size but strangely I still didn’t visit the doctor. The pain and stiffness continued but the penny didnt drop that it was anything to worry about until a couple of  months later whilst visiting my Father, he said ‘oh you’ve got travelling arthritis’ he said he’d had it for years (obviously not very bad) and it was called travelling because it moved around the body!  I promptly visited my Doctor, who smiled at the word ’travelling’ told me he meant Rheumatoid and then said of course he’d do the blood test but was sure it wasn’t 
RA.  My blood test came back with a positive Rheumatoid Factor – I had RA.

An appointment duly followed with a Consultant Rheumatologist, whose name I can’t remember, he abruptly told me the diagnosis but not the implications, there were no further tests and I wasn't given any treatment choices or advice.  He simply said you must give up breast feeding and take XYZ, I can’t even remember what it was.  In tears, I was still hormonal having only recently given birth and desperately not wanting to give up feeding my baby, I left, refusing treatment.  I felt, alone, scared and very vunerable. I had no idea what to expect.

I must add at this stage that 23 years ago there was very little information available on RA, there was no internet,  and the few books that were written were medical and in a language I did not understand.  None of the new medications were available so treatments were limited. There was no monitoring I did not have any follow up blood tests to check ESR, in fact I didn't even know ESR existed. Patient education was nonexistent and I had no idea that an untreated disease would lead to joint destruction and disability, I just had Arthritis – didn’t lots of people?

My painful joints increased, progressing to fingers, toes and shoulders as well as my already painful wrists and knees, strangely my hip didn’t hurt and to this day it’s the only place that doesn’t seem to be affected. Morning stiffness left me shuffling to the bathroom to run a hot bath to try and ease my joints.  My Doctor prescribed Ibuprofen 600mg 3 times a day and I hobbled through the next few months, trying homeopathy and infra red lamps and anything else I thought would help, crying through the pain but not knowing what to do.  I didn't know anyone with a chronic illness and certainly no one with Arthritis.  I didn't understand that there were different types of Arthritis and no one ever explained how RAD attacked my joints and body.  I then came across a book called Curing Arthritis the Drug Free Way by Margaret Hills who advocates a regime to ‘rid’ yourself of RAD.  It involved lots of honey and cider vinegar, protein drinks, vitamin supplements, black molasses and Epsom salt baths as well as eliminating many foods from your diet.  I was a woman on a mission, I saw this as my answer, and threw myself into this regime wholeheartedly…did I feel better? did it work? -….I don’t know is the honest answer, I doubt it, in my ignorance I believed at this stage that I could get better, that just given time this could work. I persevered but for years pain was my constant companion, I was still taking the pain killers, spent many night nursing painful joints in tears with bags of frozen peas acting as ice packs, still couldn’t lift my arms to do my hair or reach into top cupboards, cried as I drove to collect my daughter from school from the pain in my shoulders as I turned the steering  wheel, I grimaced as I picked my baby daughter up from her cot instead of smiling with joy….life was hard ….but I was ‘doing’ something, I wanted to believe it would work.  My right wrist gradually lost mobility and I was given a wrist support.  I developed chest pains , I thought I was having a heart attack, a trip to A and E and I was told I had Viral Pericarditis ( I now know that this is probably connected to RA and not a virus at all) and to this day have a slight pericardial effusion.  Whilst there I was given and ECG and was told I also had a condition called Wolfe Parkinson White Syndrome (it’s basically a deformity of the heart with two pathways for electrical current) could life get any better!  But, when you have children you have to carry on regardless and that is what I did, kept going through the pain as best I could,trying to protect my family from the reality of a chronic illness…..then gradually something happened.  I realized that I wasn’t taking the pain killers as often and the pain in my joints had lessened. Things continued to improve, very slowly, but by the time my youngest daughter was 5  - I didn’t have Rheumatoid Arthritis – Did I?

I’m going to add here that in no way do I advocate that any kind of diet regime can ‘cure’ RAD I think we are all educated enough these days to know that it is a chronic autoimmune disease for which there is no cure.  But of course a healthy diet always helps!

RAD Holiday

Ray and I

For the next 10 or so years I lived the life of the ignorant, I am ashamed to say now that any time RAD was mentioned , I would say ‘Oh yes I’ve got that but it doesn’t bother me any more’.  How quickly one forgets when one perceives that they are better. I still was not educated about this disease , I hadn’t bothered to look, because mine had gone! The internet arrived so I had all the resources at my fingertips but ‘Iwas cured’ , how naïve could I be. I had the odd twinge and my fused wrist was inconvenient and would occasionally swell slightly and I complained bitterly about it when it did, I had forgotten the pain of my swollen, throbbing joints or at least buried the memory. Looking back there were a few episodes during the latter part of those ten years that should of raised alarm bells, but I think I was playing at being an Ostrich and kept my head tucked firmly in the sand!

My 10 year holiday came to an end and gradually RAD eased its way back into my life.  As the pain returned I did eventually give in and  was referred back to a Consultant Rheumatologist at Frimley Park Hospital, a canny Scot with a dry sense of humour, whose care I am still under. However I wasn't even honest with him, if I admitted how I felt it would be true, stronger painkillers were all I wanted. My bloods showed nothing my ESR was normal and at this stage CRP wasn't being monitored (or at least wasn't mentioned), up to this point I didn't even know what ESR was. In fact my ESR has remained in normal range throughout by battle with RAD its only my CRP that reflects the inflammation in my body. My feet started to hurt, I had days  where walking was painful, so a trip to the orthopaedic specialist followed and he ordered  some Xrays , he declared that my foot bones looked like they had been eaten by mice, he said you have Rheumatoid Arthritis and should be on medication to prevent further joint destruction. I was still in denial I almost looked around to see who he was talking to, the xrays looked alright to me!  My neck hurt for months, must be my pillow – it wasn’t RAD.  I convinced myself I was still OK I didn’t need meds and I didn’t need a specialist. Eventually I started to research RAD and looked in on forums to see what others were doing...I didn't need to join in ....I wasn't bad enough....

As the next few years rolled by painkillers became my new best friend as my left wrist joined my right, it wasn’t fused, but swollen and painful, my knees would hurt some days and so would my fingers and shoulders but only for a day or so and  then they’d be ok . My feet still hurt a lot of the time, but its surprising what you accept given time and see as 'normal'.  My Rheumatologist  treated me to periodic cortisone injections into various persistently swollen joints which helped no end, they eradicated the pain and swelling for months  on end and only added to my belief that I didn’t need  these toxic meds that he was now talking about and I refused to consider. I gradually got worse, my Rheumatologist was talking about MTX, I wasn't listening, I kept telling myself it would go...it had before , why wouldn't it again?  My health was in decline - I just wasn't ready to accept it.

Summer 2007 arrived along with increased pain, multiple stiff swollen joints, fatigue, morning stiffness and  reality – my RAD was back with a vengeance.  The worst was still to come.

To Med or not to Med...that is the question

Marbella, Spain

Summer of 2007 arrived and although I had been experiencing periods of swelling and pain in some joints it had not been overwhelming.  I had been told in 2006 that I had a uterine fibroid measuring 10cm and a hysterectomy was recommended.  In my usual fashion, the idea of surgery terrified me , I buried my head back in the sand  and tried to pretend it wasn’t important.  I had read that they reduce in size at menopause and as I was 50 when it was diagnosed I decided to ‘wait and see’. We moved to Spain that summer, for a year,  and within a few weeks of arrival my RAD went into overdrive.   It started in my knee and very quickly spread to almost every joint in my body.  I kept thinking it would improve, was taking nothing but high doses of Ibuprofen, and every day I would wake up feeling like I had the flu, could barely make it from the bed to the bathroom  and spent every day in acute pain.  I cried constantly from fear, desperation and frustration and of course pain, my life was a misery. I spent many days in bed in too much pain to even get up. To add to the misery my fibroid was growing, I now looked 4/5 months pregnant, but couldn’t even think about that,  it just added to my misery.  My family despaired they were profoundly worried and didn’t know what they could do to help.  I phoned my Dr in the UK and she advised that I should have a course of prednislone…whoa!  No way was I going to take that…so we settled on Diclofenic and my daughter who was back in the UK on a visit picked it up and bought it back with her.  It didn’t help. 

I somehow made it through to the New Year of 2008, to be honest it’s a blur of pain and despair and I don’t know how I got through it.  January came and bought with it an apointment with my Rheumy so I flew back to the UK.  He took one look at me, told me I needed to take the prenislone, prescribed 10mg a day and advised that I should take MTX.  The prescriptions were written.  Within days of taking the prednislone  I felt on top of the world.  MTX, no I wasn’t brave enough for that, I put them in the cupboard, we were returning to the UK in July I’d think about it then.  My prednislone dose reduced gradually over the coming months down to 2.5mg, and I felt OK.  Life was good – I didn’t need to think about it.  By the time the summer ended and we returned to the UK I was off the prednislone had some slight pain and swelling but generally was OK. A follow up with my Rheumy in Nov 2008 the letter said ‘generally doing well does not need to start MTX’.  Hallelujah!  My fibroid had shrunk…the menopause had arrived.

By March 2009 the steroids were out of my system and the pain was back, yet again.  I had developed a Bakers cyst behind my left knee and the pain from that was agony alongside a cycle of swelling and pain in various joints.  I had an appointment with the Rheumatoid Nurse and she administered an intramuscular depomedrone to help settle things down.  My next appointment with my Rheumy was  in June 2009, he drained my knee, injected yet more steroid and then we discussed meds again he said ‘this is a team effort and only one of us is playing  you really need more aggressive treatment you need to try MTX’.  I knew the steroid would help for a period of time so we agreed to discuss again in September.  This time the steroid ‘relief’ only lasted a few weeks  and I was back to the same of cycle of stiffness, flu like fatigue and pain.  

I recently was looking through the document folder on my computer and found the following passage that I had written prior to starting any medication, I thought I would start a diary but never wrote anything else! . I thought it was appropriate to enter it here..

Living with RA is living within the unreasonable. An immune system attacking itself is not reasonable, a disease that warps your joints is not reasonable and the kind of pain that makes you cry every day, can make you scream, takes away your sense of humor and will to live is not reasonable. Therefore, it is not reasonable to expect that you will live cheerfully using the same tools as a healthy person with a bit of a headache.
I read this recently on the internet, and it made me realise for the first time in 20 years that I have been trying to live my life as a healthy person...and I'm not.


Oh today is fine, having had Steroids injected into both my knee and my elbow on Friday my whole body is feeling the benefit amd I feel more or less pain free...very easy to kid myself that I am not ill at all, I've had a day of housework, have inevitabally done too much...but feel good...normal!


But I know that in a few weeks this dreaded disease and pain will return  to haunt me, I will once again lie in the bath and cry because my body is in too much pain to move amd I can't bear the thought of trying to get out of the bath, and I guess in truth I feel sorry for myself......my family know I have  pain on a daily basis but will be mostly be oblivious to my fear and despair because I dont want to burden them with the ongoing effects of this chronic disease.  So the door is locked and I cry alone and in silence.  To most people in the outside world I just seem like a normal 50 something woman geting on with my life...I choose not to tell people about my illness, is this right or wrong? I cant decide..I just feel like I am at a crossroads and I need to make some serious descisions....Yeah I know...like Methotrexate or Not?   ...has always been not up til now...but now I'm not so sure!!!!  My  doctor said to me last week that this is supposed to be a team effort and only one of us is playing...meaning him!!!


Life is unpredictable and I have no idea what the right thing is to do...will my RA go into remission on its own...Oh I know thats unlikely but I can hope...can I bear the side effects of Methotrexate and will it work...oh and yes can I really give up wine!!!!!!

I lasted only until August when I phoned begging for an appointment I needed another steroid shot, my daughter was getting married in September 2009  and no way could I enjoy that with the amount of pain I was in.  My Rheumatologist agreed to inject my other knee, which I knew would give symptomatic relief to all my joints, and then we had the talk of 'this isn’t going away you need to treat it aggressively to stop further joint damage – you cant just keep having steroid shots to control your disease…' reluctantly I agreed to start MTX and folic acid after my daughters wedding on 6^th September. 

I looked at that bottle of pills endlessly I’m not sure what I thought would happen, I just know I was terrified!  I worked myself up into a frenzy and put the day off for as long as I could there was always a reason why I would start tomorrow.  As my pain returned I realized my choices were limited so I took a deep breath and swallowed my first tables, 7.5mg.  OK..nothing happened..I didn’t collapse or stop breathing  or have seizures or anything else that I had thought about..I was OK.  That first week wasn’t too bad, a bit nauseous a bit tired but OK.  Week 2 it hit me, the tiredness was overwhelming it wasn’t just tired it was like brain fog I felt drugged and I felt sick.  Week by week this got worse, I’d take the tablets then for 4/5 days feel like hell and then have 2 days of OK, the pain improved…but this wasn’t life…was it?

End of November and it was back to Rheumy….'stop the MTX…we’ll try hydroxychloroquine'.  Well,  I liked this,  yes I was worried about the eye problems but tried to put that to the back of my mind, this was the mildest of the DMARD’s and if this worked for me I’d be happy.  Four months I was told is the period of time before we can asses if its working and by January  2010 the pains were back, my GP put me back on 5mg prednislone until I saw my Rheumy at end March.  Next visit it was deemed that Hydroxychloroquine was not working…lets try leflunomide…….uggh sick, sick and sick!  Next Visit mid May lets try Sulfasalazine…’need to have failed 2 DMARD’s that you have trialed for a reasonable period of time before we can put you forward to ANTI TNF therapy’…..Did I even want ANTI TNF? 

So my Sulfasalizine journey began I started taking it at the of May and I think it was working to a degree…was I in remission …no…but doing kind of OK ….next follow up I was advised to stay on it, so I carried on and all was well until I woke up on Friday 29^th August 2010 and did not feel well at all......

My Sulfasalazine Hell

My dog, Joe

Friday 29th August 2010 and I thought I had a virus, just didn't feel well, I left work early and went straight to bed.  I phoned my doctor and she said she would call in on me on her way home.  I had a temperature, urine showed blood and she thought I had a kidney infection, she prescribed Cyprofloxacin.  Later on that evening my husband noticed I had a rash on my chest but I felt so ill I just ignored it and went to sleep.  On Saturday the rash was still there and I felt no better, I phoned the out of hours GP who said lets change the antibiotic, so he prescribed Amoxiclav, I started those at lunchtime.  By 10pm I knew something was wrong, once again I phoned the out of hours GP who came out, he said he didn't think it was a kidney infection and he wanted me to go to A and E.


From there I was admitted ...I was not really given a reason, they agreed it wasn't a kidney infection but they wanted to keep an eye on me and  to to an ultrasound of my abdomen. But,  this being the NHS and a bank holiday weekend nothing was happening fast. I was put on a saline drip and moved to a ward and from there I just waited until eventually on Monday I had an ultrasound...my spleen was slightly enlarged and I then found out that my bloods were all over the place.  But still there was no consultant.  By Tuesday when the holiday weekend was over I insisted on being transferred to the Private Wing, Parkside,  as I had BUPA cover, and from there on in I had a consultant, in fact several. I'm not knocking the NHS but you wouldn't want to have an extended stay on an NHS ward, as a private patient I at least had my own room with en-suite and most importantly 24/7 access to my own consultants.   No one knew what was wrong, I was told that I had acute hepatitis my ALT level was 950, its supposed to be under 40! and Lymphopenia, but they didn't know the cause.  I was put onto the  liver repairing drug N-Acetyl Cysteine by IV and the antibiotics Piptaz, Gentamicin and Metronidazole also by IV.  I was scared,  my family stayed with me day and night, sleeping in a chair next to my bed I was too frightened to be alone. I went downhill fast and the specialist consultants started to arrive.  I had a constant temperature and Tachycardia and chronic diarrhoea, I was sick and  my mouth was dry but most importantly my liver was in trouble.   I was on one hour observation and blood was taken 4 or 5 times a day. I drank water constantly but I was so weakI couldn't lift a glass so I was given a beaker with a spout to drink from,  it would be weeks before I had the strength to lift a glass again.  I had no appetite and had barely eaten for days and was losing weight rapidly. I had a heart specialist, a general surgical consultant, a professor specialising  in Lymphoma and a liver specialist.  The very prominent professor order blood tests for Hepatitis A,B and C, CMV, EBV, PCR and T Spot, d.s. DNA, HIV, Blood cultures, Live biopsy, Myoplasma, Dengue, Spotted Fever, Typhoid, Coxiella, Hepatitis E, Leshmaniasis, Malaria, B2 Micro globulin and Toxoplasma.....and started talking about Lymphoma. I had 2 CAT scans that showed enlarged lymph nodes in my chest, under my arms and in my neck.   A liver biopsy was performed on the Friday morning and as my liver was heading towards failure, the sample was biked to Kings College Hospital in London as an emergency to be reviewed by a Lymphoma specialist.  Friday afternoon came and the professor visited me to tell me that all the blood tests had come back negative and he was now 95% certain that I had Lymphoma, but we would have to wait for the results of the liver biopsy.  My world collapsed, my daughter was with me and we just hugged and cried...I was certain that I was going to die.   He was arranging for me to have a lymph node removed from my armpit that weekend, I knew they were enlarged I could feel them now in the base of my neck.  Saturday morning I woke and my face and arms were swollen and I was covered in a rash, the consultant was called in and I was given a shot of steroid and anti histamine...no one knew what was happening.  As the day progressed my skin started to peel,  starting with my face and even my eyelids by the afternoon my legs had turned purple and my whole body was shedding skin.  All the IVs were removed, no one knew how to treat me and I know they were worried that the drugs were doing me more harm than good. They were finding it difficult to find veins to insert a line into to get bloods, my body was shutting down my veins were disappearing , so it was decided that on Monday I would have a pic line (central line) put in. My Lymph node removal was scheduled for Sunday afternoon and I had elected to have it under local anaesthetic, I didn't feel my body was strong enough for a general, there were lots of raised eyebrows but no one tried to stop me.  It wasn't postponed because of my rash, the swelling had started to subside and I was too sick for them to wait.  It was horrendous, to be inside an operating theatre when you are awake is not good news.  I tried using visualisation techniques to distract me but the tears just flowed.  They removed a 1.7cm Lymph Node.  It took about an hour and when my nurse came down to collect me and my bed, I just sobbed.


Monday came and the pic line was inserted, this is done with ultrasound guidance as the tube is inserted into your upper arm and fed down into the top of your heart.  The first try on my left arm failed, my veins were not in good shape and as I looked down at the pool of blood left on the sterile sheet I sobbed once again.  It eventually was sited in my right arm!. I was at rockbottom.


It was now a waiting game for the results of my liver biopsy and my lymph node excision biopsy. My whole family thought I had Lymphoma and were distraught, they put on a brave face but my daughter admitted afterwards that every time she left me she would break down in tears and I spent many black hours thinking of how I would put my affairs in order. I sunk into despair.  People often think they know how they will react if they are told they have a terminal illness, I had pondered this myself in the past, but in reality I didn't howl and cry constantly as I thought I would... I was just numb. Of course I cried, my eldest daughter was pregnant with her first child and I was devastated I did not want to die and couldn't bear the thought  that I would not be here to share not only my daughters lives but my granddaughters too.  I desperately did not want to leave them.  All meds had been stopped after my rash appeared but I still had a fever, tachycardi, diarrhoea, and night sweats, bloods that were all over the place and liver function that was deteriorating.  An echocardiogram of my heart was arranged and although I had Tachycardia my heart appeared normal but I did have a small pericardial effusion.  The dermatologist was involved to try and fathom my rash and now very dry skin, but not itchy....she performed a skin biopsy, yet another op, to remove a section of my skin on my abdomen for analysis.  I was told I had to imagine that my skin had been burned but not from the outside but the inside!


The week passed in a blur of believing that I had cancer, I was still under 24 hour observation at 4 hour intervals with bloods taken every time my fever spiked. Friday arrived and the Professor announced that the results of the liver biopsy were back and they showed no sign of cancer.  I now had to wait for the lymph node results to come back which would confirm the no Lymphoma diagnosis ... but I started to have hope once again.


I was still very sick and the weekend passed slowly I was still eating very little and could barely get out of bed to go to the bathroom, my skin was still red and angry and I was applying cream every hour to alleviate the dry,  irritation that was all over.  I was told to be prepared that if I deteriorated any further I would have to be transfered to Intensive Care or possibly even transfered to Kings College In London to their specialized Liver Unit. On Monday when I had been in the hospital for 2 weeks and 2 days I was told that the Lymph Node results showed a drug allergy, I was given the diagnosis of DRESS syndrome (Drug Reaction Eosinophilia and Systematic Symptoms). Elation was what I felt, this could not be as bad as what I had imagined and at last I had a diagnosis and could be treated.  My care was passed to the top liver specialist at the hospital, Dress was a very rare condition, one that nobody at this hospital, or most others, had ever been involved with.  My specialist had never dealt with a case of this kind and took a day of research and speaking to every consultant he could throughout the UK to decide on a treatment plan. I now know that DRESS has an overall mortality rate of 10% increasing to as much as 40% when there is acute liver involvement, but at that time I was unaware of this. My liver was in a bad way and it was decided that I would be put onto IV Methylprednislone at the equivalent rate of 60mg prednislone for 10 days initially.  My fever started to subside and gradually my liver started to improve I was still having the night sweats with the nurses having to change my sheets and gown several times a night and of course I didnt sleep on that dose of Methylprednislone, my sats were not stable but it was going in the right direction. My appetite started to return and I felt at last there was hope that I would recover.  As I started to try and get up and move around once again I realised how weak I had become, my muscles had wasted in the weeks I had been unable to get out of bed.  But I hoped and prayed that I was in recovery and waited patiently as twice daily they took my bloods eager for the results to see my liver repairing itself.  Towards the end of of the third week I washed my hair and  as I began brushing it, it began to fall out!. I didn't worry too much at this stage, I was alive and hopefully recovering that was all that mattered to me.  As we went into the fourth week I was improving every day, I even felt up to visitors which I hadn't had except for my immediate family, and there was talk of me going home.  I was discharged on the Thursday of that week 23rd September,  I had been in hospital for 3 weeks and 5 days.  I was to take 40mg of prednislone for the first week, then come back to see my consultant to hopefully start on a taper.  I was going home..........

My recovery and beyond

I was discharged on Thursday  23rd September and my recovery was to be long and hard. I was weak, a slight frame to start with, at 5'6" I weigh about 120 lbs, I lost 10lbs and from my time in bed my muscles had started to waste. I was still suffering from the effects of my 'burnt' skin which was red and uncomfortable but surprisingly still not itchy,  I moisturised it 4 or 5 times daily with the prescribed cream and it drank it like a sponge and  the night sweats were still with me. I struggled at this stage to be able to walk upstairs or to be able to perform the simplest of tasks.  I was told rest and gentle exercise were the only solutions. My family nursed me, I was like an invalid, but little by little I started to improve.  It was however to be a year before I was fully recovered.  I reduced the steroids gradually, yes I had problems with withdrawal which was hell and had to go up and down many times until I settled on a steady dose of 5mg just to control my RA, which had disappeared throughout my illness,  but gradually returned as I got better.  My Rheumy would not think about further treatment until he was sure I was strong enough, he was still talking anti TNF. Alarmingly my hair continued to fall out, it fell out  in the shower when I washed it, fell out in clumps on my brush , and fell out  on to my shoulders clinging to my clothes. My hair was thick to start with but  gradually it got thinner and thinner until I got to the point where I looked on the mirror and my parting seemed very wide and my scalp shone through like a beacon!   I know I was lucky to have survived, but I cried, life seemed so cruel I had been through so much and now this.  By the New Year, 2011, my daughter was so upset for me by my hair loss that she ordered me some supplements, ridiculously expensive, but after a few months my hair started to spout! (This is a shortened version of the agony, trauma, stress and despair that I felt). It was so thin it was transparent and I continually pulled at the sides to make sure the wind had not blown a hole in it...I had it cut shorter to try and disguise it...but thin hair is thin hair and that's exactly how it looked.  Now, it is still not back to where it was but I'm getting there!
My GP told me it would be  a year for me to fully recover and that I had Post Traumatic Street Syndrome and would benefit from therapy....I took her advice...It helped...made me revisit events and try and put things into perspective.
My eldest daughter gave birth on 27th February to my beautiful granddaughter Ellie, and I was lucky enough to be at the birth...what an experience...what a privilege...what a joy!...

The birth of my Granddaughter looking frail and tired..thin hair..and wheres my fringe gone

I continued to get better bit by bit.....but my RAD got worse...
I visited my Rheumy in April 2011, I had 18 swollen joints 6 tender joints CRP of 16 and ESR 5...this gave me a DAS score of 5.53....and I thought I was doing OK!  We agreed that the nurse would repeat my DAS score in 4 weeks time with a view to starting Anti TNF therapy.  Cimzia was the drug that was being talked about at this stage, I'm sure that this was primarily based on cost as the manufacturer was providing it to the NHS free of charge for 6 months.  My DAS score was repeated and had not improved, by this stage I had researched again the various Anti TNF therapies and had decided that I wanted to try Enbrel, I felt it was the most appropriate, had good results and had been used for a significant period of time, my case was put forward to the Primary Care Trust and it was approved.  I was on holiday in Spain for 3 weeks in June/July and managing to get by OK on my 5/7.5mg prednislone, so I  arranged my first delivery of Enbrel by Health Care at Home for the end of July.   The Enbrel sat in my fridge for the next few  months...I  have always been scared of the meds prescribed but my experience the previous year had left me feeling vulnerable and doubting my own bodies ability to cope...

July 2011 Feeling better and hair starting to grow

October 2011 came and my Rheumy made me see there was very little choice, I could not carry on taking prednislone and the likely hood was that I would need ever increasing doses to control my RAD.  The decision was made!  It was agreed that the Rheumy Nurse would supervise my 1st few shots as I was so nervous. The day arrived, Tuesday 11th October, the whole process was a blur I was literally hyperventilating...I know many of you reading this will be saying...oh for goodness sake pull yourself together...and that's exactly what I would of said to someone else..I know this fear is not rational..but my experience has made me realise how fragile we all are ...and how easily your body can react to a substance it does not like. My fear is out of my control.  Anyway..the deed was done...it stung but I felt surprisingly OK . The following morning I felt great...enbrel..I don't know!  By the Saturday I had  some slight spotting, which is a no no for a post menopausal woman.  A trip to my GP on the Monday, a referral to a Gynaecologist for the Thursday.....bloods, ultrasound and MRI...My fibroid had grown and after Menopause 'this is a real cause for concern'...I needed a hysterectomy....'could be something nasty'..they couldn't tell. My Gynaecologist said 'lets do it as soon as possible how about next Friday 28th October'.  Of course  the Enbrel had to stop for surgery, I'd only had one shot.. The week passed in a blur, scared as hell but didn't really have a choice..I'm not going to expand on my Hysterectomy as it isn't really relevant to my blog, but all went well Total Abdominal Hysterectomy with Bilateral salpingo-oophorectomy  (hows that for a mouthful)...all gone! Just in case your interested  my Uterus with the fibroid in weighed nearly a kilo, normally should weigh 60-80 grams I believe and measured 18cm , wow how had I managed to fit that in! Six weeks recovery, no complications and  again my family nursed me back to health and in December I decided I was ready to try Enbrel again. I had a slightly sore ear but nothing too bad.  The second time round I felt quite relaxed about it and on 20th December the Rheumatoid Nurse showed me how to inject with a view to me doing it myself the following week... Christmas 2011 was good...pain levels and stiffness were low...but ear was bugging me..on 26th December I went to my GP who decided I probably had an ear infection so prescribed Amoxycillin 250mg, we discussed my previous DRESS Syndrome but she felt that as I would have to take antibiotics at some stage in my life and as I had taken this before, she was sure I would be OK.  I took the pill at 6pm, at 1am I woke and my ear was hurting so came downstairs to take another antibiotic as I felt OK...looked in the mirror and was covered in a rash!  I made a phone call to the out of hours doctor and he told me take antihistamine and go straight to A and E.  I was fast tracked when I arrived..(the usual wait in A and E is probably 4/5 hours!) and  by this stage the rash had covered my body and my face was bright red and shiny! My first thoughts and fears were that I was going to have a repeat of my DRESS syndrome  and all my worst nightmares came back to haunt me. I was given IV antihistamine and IV Methylprednislone and was kept in all day to monitor my bloods, in particular my liver, which thankfully was OK.  I was discharged on a reducing dose of predinslone (again) over 2 weeks starting at 40mg.  The rash was itchy and absolute hell and I felt out of sorts for about 5 days but  gradually it subsided and after about 10 days I was clear.   Once again I had only managed to have one shot of Enbrel.   A sore throat and a cold followed which I have only just managed to shake off...I still have a sore ear but it doesn't seem infected and I'm putting it down to RAD...So here we are...an appointment with Rheumatologist next Wednesday 8th February 2012 and an appointment with the Rheumatoid Nurse on Thursday 9th for me to self inject....3rd time lucky my Enbrel journey is about to start!