Joint Damage

This blog so far has been about me and my RA, I apologise if so far it has seemed self indulgent but I write it for me as a reminder of the stages of this chronic illness, of the battles I’ve fought and won and the demons that I continue to fight. I also write it for my fellow sufferers that they may gain insight and support from my own problems and experiences.  We are all different and my disease will not be the same as yours but for many of you we will have similarities.  For some reason those of us that are chronically ill are drawn with morbid fascination to the ills of others, medical shows and the health pages of newspapers and magazines.   Why is this? – maybe because we want to compare, to think we are not as bad as others, to think we are worse than others or maybe just to realize that what we feel and are experiencing is normal. To realise that there are people suffering from many illnesss worse than ours.  Maybe to try and learn what to expect from those that have gone before or maybe just because we live in a world of medication, doctors, illness and disease and it is what we know the best, what we are comfortable with, a common ground that brings us all together regardless of race, religion whether we are rich or poor, regardless of material trappings.  We look into each others lives often with dread and horror of what may be in store for us but we all pull together to offer support and real empathy.

This post is about  a topic I  have promised to share with others - the dreaded joint damage.  You may already have damage that is not as bad or worse than mine you may look in, in horror, at what may happen to you.  But this is my joint damage - it may not happen to you and if it does it may be similar to mine or it may not, it may be better or it may be worse our illness manifests in different ways in all of us. To be honest I don’t know anyone else personally who has RA so I have no idea how bad my joint damage really is in comparison to others -  but this is my story!

I was diagnosed 24 years ago and my wrists were one of the first joints to be affected, those of you who have read my blog will know that I took no medication at all for many years, I was not aware in those days of the potential damage to my body.

No one ever told me back in the day that as RA is an autoimmune disease that my body's immune system would react against itself and that the fluid that lubricates my joints would become inflamed. That cartilage and tissues in and around my joints could be damaged or destroyed or that if the cartilage between my joints was eliminated my bones would begin to touch and wear directly into each other, that my body would attempt to repair worn bone by growing more bone onto the bone on either side of my joints, leading to the joint becoming more and more difficult to move as a lip of bone formed around the areas of friction. Or that in time the joint could get so painful that I would probably stop moving it and in the mean time that as the areas where my bone was being replaced would be in direct contact they would possibly start to join together as if it was one bone being rebuilt. No they didn’t tell me all of this – but this is what happened….

Luckily as far as I know the only significant joint damage I have is to my wrists and my feet, my right side of both being worse that the left and I guess after 24 years thats not bad going...but I wish it was less..

My right wrist was very painful and sore  from the outset, typical with RA it had times where it felt ok and then I would use it and it would flare and swell again.  A wrist splint was my daily accessory.  At this time I had a young baby so lifting was just a part of my daily life and I gritted my teeth and pushed through the pain.  Gradually over a period of 3- 4 years the range of motion in my wrist got less and less but then as my body went into a natural remission the pain mainly subsided, but by then the damage was already done!  My wrist would ache if I over used it but I had learned to adapt, my range of movement by this stage was down to a 45 degree bend.  X-rays revealed no synovial spaces in my wrist it was a mangled mess.  I visited the orthopedic surgeon to assess the situation and was given the option of a wrist fusion but as the pain was minimal at this stage and I still had some movement I was advised against it.

When my RA decided to return some years later my wrists were the first joints to be affected. I started to suffer with soft tissue swelling on both wrists, up until this stage my left had been functioning fairly normally.  Many days they looked huge, I have always had very prominent ends of my Ulna bones (both my daughters have too) but these disappeared under a mountain of swollen tissue. During flares they were consistently painful, many days I couldn’t use them at all. When flaring I couldn’t lift or carry anything even the slightest movement was excruciatingly painful and if I touched or worse still knocked them I would cry in pain.  I had endless steroid injections into the wrists which would help for a time but always wore off. In addition to the soft tissue swelling there was of course joint swelling too, spongey knuckles, trigger finger and a variety of other swollen tendons.  Only when I went onto prednisone did I get any relief.   At about this time my feet started to hurt too and X-rays revealed damage to my metatarsal heads.  For those of you that have no foot damage it is like walking with pebbles in your shoes and I know those of you that have damage will relate to that!  My rheum said from my x-ray that my bones looked like Swiss cheese that the mice had nibbled....full of holes!  I was lucky enough to have orthotic insoles made which were a godsend to my poor painful feet.

Pre Enbrel swollen puffy wrist

Post Enbrel 

I stumbled through the next few years, adapting my skills according to the severity of the pain, dipping my toe into the medication pot but with not much luck until I decided to start Biologic therapy.  I have tweeted and blogged about my success at the moment on this drug so will not go into that here but I need to add in relevance to this post that since starting Enbrel the swelling in my wrists has gone and my left functions almost normally but my right still has only about 45 degree movement – no drug in the world is going to repair damaged bone! I guess I am lucky that despite the pain and swelling over the last few years my range of motion has not decreased any more. They will still ache if I abuse them purely because the mechanics of my joints are now faulty but I manage to open jars and bottles and I even manage gardening now they may not be quite as strong as they used to be, but in reality there isnt much that I cant do with them in moderation. Do they look normal? I dont know - to me yes maybe to you no, its surprising what we get used to.  My feet are ok too, discomfort occasionally as opposed to pain but even that is not very often.  My feet look fairly normal – well to me – again you may look in horror !  My feet are wide and I have a bunion on my right foot and my third toe has a slight  ‘claw’.  These days I am even able to wear 'normal' shoes as long as they are comfortable and no high heels, wedges are good! I haven't used my insoles for months.

For feet that have been walking
the planet for 50 odd years
they're not too bad

Whether I will suffer any more joint damage now I am on Enbrel remains to be seen but I am educated about my disease these days and will do everything in my power to preserve my bones.  Had I of know at the beginning what I know now maybe things would have been different…….

If I could say one thing to those of you that are newly diagnosed it would be 'find the right med now, if you can, trust me this disease is relentless in its destruction of our joints' - Good luck.

In the interests of comparison or in case you are just curious about range of movement with a partialy fused wrist I have recorded this video because as much as I describe my joints to you I believe seeing what has happened to my wrists will help you more……I hope it shows what I intended and thats the movement left in my wrists but apologise that I kept forgetting what I wanted to say..and please ignore my dog opening the door half way through.

Holidays Rock

Having just returned from a 4 week holiday I am feeling happy, content, pain free and grateful for my life.  I have so many twitter buddies searching for relief from RA with new meds, med additions and alternative therapies  that I am once again reminding myself that I am so lucky, at this moment in time, to be where I am on Enbrel and I am determined to make to most of it, appreciate what life has to offer and to try and not worry about what may or may not be.

This is very much a pictorial blog post - a reminder of how wonderful my holiday was!

My holiday was a real turning point for me I departed on Wednesday 13th June on the ferry from Portsmouth to Santander in Northern Spain.  Accompanied by my eldest daughter, my 18 month old granddaughter and our two dogs, we squeezed into the tiny cabin for the 24 hour journey.  Sleep did not come easily in a tiny bed with a hard matress and a dog that barked every time someone moved in the corridor, but I did eventually drop off and slept quite well. I woke the next morning feeling optimistic for the first time in months, the ferry docked at 12 noon and the sun was shining my spirits lifted even further and we set off for a 350 mile journey to our overnight stop in Toledo just south of Madrid.

We made it in good time, several stops along the way for drink, food and stretching and luckily joints didnt complain too much and we checked in at around 7pm.  It was glorious - the views over Toledo were sublime, the hotel was set in the mountains and it was just lovely. Hot bath, room service and bed were all I could manage.

Friday the 15th was hot and sunny and the last leg of the journey, the 300 miles to Marbella passed easily, we arrived about 4pm, unpacked the mountain of things I had bought with me from the UK and settled infor the start of our holiday!  Coming back to Marbella is almost like coming home for me, because it is ours,  it is full of things that make me feel comfortable, there is no uncertainty like I sometimes feel when  I go somewhere different. Here I know where to shop, where to eat, where the pharmacy is ...I know what to expect....and I like that!

My partner Ray, my youngest daughter and my eldest daughters husband Peter arrived the next day. Now you may be wondering where my Enbrel was in all of this , well I had decided I could do without the stress on the journey so my family were bringing it with them on the plane.  Fully instructed they had wrapped it in bubble wrap, popped into a cool bag with 2 ice packs and attached the thermometer with instructions that it must stay within 2 - 8 degrees.  No probs, had been in the fridge on the plane but walking over the border in Gibralter to the car hire it had tipped over at 8.5 in the sun, they rushed to the hire car turned on the AC and tried to keep it chilled for the 40 minute drive to Marbella. My daughter ran to find me at the pool (bit like one of those scenes on TV when the transplant organ arrives in a hurry) we ran upstairs and straight in the fridge to settle down... phew that was it .....except when I woke in the morning the fridge was too cold and the thermometer was showing - 1.  Panic, panic, panic - a day of trying to regulate the fridge, too much food in it was throwing the thermostat out of sync, another night when the temperature dropped too low, I thought that was it, hundreds of pounds of meds ruined (3 click pens) and envisaged a holiday with worsening pain and even worse, maybe enbrel would not work as well when I restarted it when I got home. So -  a phone call to Healthcare at Home in the UK and spoke to the pharmacist who after much thought and consulting with various colleagues said it would be ok, as long as it was not frozen and no large particles, he said perhaps safer to keep it between 8 and 25 degrees under which circumstances it will keep for 45 days. So I relegated it to the electric cool box where is stayed quite nicely at around 12 degrees for the rest of the holiday.

Well after that it was plain sailing, I forgot about my Enbrel, except on Tuesdays which is E day. This holiday was to be about recharging my batteries not about pushing myself to my limits and  I spent three glorious weeks at our apartment resting, reading, swimming, meditating under the palm trees, having long leisurely lunches followed by a nap in the shade in the gardens, strolling around the sights and eating at fabulous restaurants. I spent valuable hours with my daughters chatting, laughing, drinking coffee in the Port, watching the world go by.... creating precious memories.  Walking my dog on the beach and watching my granddaughter enjoy her holiday -  simple pleasures but a reminder of all that is important in my life...

My apartment is only a short walk from Puerta Banus but it is very quiet and peaceful it is built like an Andalucian village with small clusters of low rise buildings set around swimming pools surrounded by palm trees and beautiful gardens  ....bliss ...and every day that passed I felt better and better, my anxieties slipped away and I began to feel like myself again.

Puerta Banus itself is often described as the playground of the rich and famous, unfortunately I fall into neither category. The port itself is lined with bars, designer shops and restaurants - a great place to people watch and enjoy a drink, a coffee or eat dinner.

Marbella old town dates back to the 16th century and is a maze of tiny streets lined with small shops and restaurants and shady walkways covered in flora. We had some lovely evenings wandering the streets enjoying the sights and eating at superb tiny bistros tucked away.

The weeks passed too quickly and reluctantly we repacked the car, retraced our journey, boarded the ferry for a rocky trip across the Bay of Biscay and docked at a very grey and damp Portsmouth on Sunday 8th July at 7.30pm.

I arrived back at home at about 9.00pm and it had apparently rained non stop for the 4 weeks I had been away, my garden had grown beyond recognition, my miniature buddleia has grown so much I can hardly see my front door.

Now my holiday is over but my new found sense of freedom from myself and my negative thoughts is something I am determined to maintain.  I am going to keep myself busy, I already have several projects planned and maybe another trip on the horizon.

 That sentiment is dedicated to all of those suffering 

from chronic illness  - never give up!

So So So Lucky

A quiet spot to relax and have a coffee

It has been a long time since my last post and although I have thought about my blog frequently I haven’t had the mental strength to write my thoughts.  Why? I don’t know.  I had a cold a few months back that threw me into a fit of anxiety, my first illness since starting Enbrel, I was convinced I would get an infection.  In reality -  I didn’t  - I’ve had many vague annoying complaints like tingling pains in my right leg that I was convinced was MS, my Doctor said No and its gone!  A sour metallic taste in my mouth that has gone on for months , Acid Reflux? -  Started my PPI’s again,  Post Nasal Drip?  - have been given a steroid nasal spray and been using a sinus rinse but convinced this was ‘something more’ went to see an ENT specialist.  Camera up nose, no problems, sinus’s are pristine he said, must be all that nasal washing!  In all fairness the taste is subsiding  and some days it’s hardly there it’s my anxiety about it all that is the real problem. Only this morning I visited the GP again because I had a slightly swollen patch under my tongue she assured me it is not infected just a bit red and slightly swollen but as I am going away she has given me some dissolvable hydrocortisone which we hope will calm everything down. A few years ago if I had any of these issues I would of shrugged them off and they would no doubt of passed on their own but my returning RA and my med reactions had made me worry about everything. To add something else  to the mix I also kept altering the dose of my Estrogen patch which threw my hormones into free fall and made me think  I was truly going mad.

Well hormone patch is back to regular dose and feel more emotionally stable because of it (never underestimate the power of your hormones ladies). Most niggley issues have or are resolving  and I feel really ungrateful.  Why – well because I went to my Rheumy appointment last Friday and everything is good, no better than good it’s great.  My RA is completely controlled on Enbrel  I do not have to take any other DMARDs to support it, I do not have any pain or stiffness and never have the need to take pain relief unless I have a headache.  My blood results are normal with my ESR at 1 and my CRP at under 4.  I should be celebrating not angsting about what might happen!

I am going on holiday tomorrow and  I have spent weeks worrying about the fact that I ‘might’ catch an infection whilst away and what will I do as I’m allergic to many antibiotics, in fact no one really knows what I can take although I have a list of what to take in varying senarios!

But the reality is ‘I am lucky’ in fact I have a charmed life. I have a  partner who loves, adores and supports me.  I have two wonderful  daughters who have grown into beautiful, caring, compassionate women,  who enrich my life and I am blessed that they still want to spend so much time with me.  I have an adorable Granddaughter who I love more every day and brings me so much joy. I have the cutest Chihuahua called Joey and I really never knew you could love a dog this much. I have a lovely home with a beautiful garden.  I have an apartment in Marbella, Spain where I can holiday when I feel up to it and Im lucky enough to drive a BMW which is light on the steering and automatic transmission so its kind to my partly fused wrists.  I don’t say this to brag or boast but because acknowledging these things in print is a reality check and a form of therapy for me  and I hope I will look back and remind myself,  that yes I have RA,  but oh I am so so so lucky I have all this and my meds are working.  My life is truly blessed.

So I am off on holiday tomorrow 13^th June I’m heading off for nearly 4 weeks in the sun with the intention of appreciating my life and enjoying time with those I love (My whole family is coming with me).  I am driving with my eldest daughter, my Granddaughter and both of our dogs and the rest of the family will fly out on Saturday. I am going to try and tweet some pictures of my road trip and holiday if I find the time - because most of all I want to relax and enjoy myself!

My Beautiful Joe

Success, Hope and Positivity

When the sun is shining the world seems
like a better place - My garden this week

I’m now at the 6-week mark in my Enbrel journey and last week saw the Rheumatoid Nurse for a check up.  My ESR has remained low at 2 along with my CRP, which is at 4.  Medication wise I am now just on Enbrel 50mg, NO painkillers and NO PRED.   I am an Enbrel success story or so I am led to believe, of course what no one knows is how long my success will last.  For some the relief has lasted for 14 years or so, others still going strong at 5/6 years and yet for others it has lasted only a few months.  But I feel full of hope, overflowing with positivity and so so grateful for my success. What I must do now is remain positive.  When talking to the nurse about dos and don’ts her advice was ‘enjoy your life while your pain free’.  And she’s right there is absolutely no point in me worrying about what will or won’t happen – it’s an unknown - I have to enjoy every single minute of this pain free life.  I haven’t tried many meds for very long periods of time and it was always my Rheumatologists goal that I should be on a Biologic, I think his view and that of many other Rheumatologists is that it’s only the Biologics that work really well.  I think that a picture had always been built in my mind of a miracle drug, one with potential serious side effects, but still a miracle.  It never really figured in my thoughts that it wouldn’t work, oh I muttered the words ‘It might not work for me’ but deep down inside I always hoped, believed and remained positive that it would.  Should Enbrel fail me I will switch to another Biologic with the same hope and positivity that it will work and maybe for longer.

This is maybe easy for me to say or write because I haven’t yet had the disappointment of a drug that I pinned my hopes on not working for me.  I know many of my fellow RA’ers have tried many of the Biologics with no success and it must be hard to maintain hope and positivity whilst crippled with pain and fatigue going through the highs and lows of starting new medications which then has no effect. The stress of waging a constant health battle can get to you, day after day, week after week - It's easy to get down and depressed. The fear factor then enters the game, fear of the future, fear of nothing working this creates more stress and a negative mental state -- pessimism, feeling overwhelmed, being burnt out – and then this has a negative effect on your immunity. When you have a chronic long term illness you must have hope.  Without hope you have no future or at least it looks bleak and a positive attitude is a must when looking at treatment choices. There is also evidence that people who have a positive attitude, what is called realistic optimism, the fighting spirit… they live longer, do better…so never give up!

Now that I have enjoyed a respite from this dreaded illness even for these few short weeks I am not prepared to let in back into my life.  I have whole periods of time now where my illness no longer dominates my thoughts, I can exercise again, I can walk fairly long distances, I can open jars and bottles, carry heavy pans, change the duvet and dry my hair all without wincing in pain. I can get out of the bath without crying in agony and I can lift my Granddaughter and that fills me with joy when I have struggled for so long.  I can make plans for the weekend, for next week, next month and maybe even further ahead.   I am me again, I thought I was lost… but I wasn’t… I was just hiding under a cloak of pain and despair.

My walking route I take with my dog Joe
- about a mile - takes me 20 minutes

As usual comments appreciated, welcomed, even begged for!

Anxiety

Thought my hands were kind of OK
but every time I see them on film
 they look kind of wonky

Four weeks in on Enbrel I have now had 5 shots and continue to be doing very well.  However last week I did not 'feel' well at all.  It started at the beginning of last week on Monday I had strange feelings inside, a bit non descript, just ‘not right’and I struggled to decide what was wrong.  Of course I initially blamed the Enbrel, It’s always the meds, right? However as the week went on I had stomach discomfort, acid, a strange feeling in my chest, my head felt strange, I just didn’t FEEL right. I had my lab results back and great news my ESR was down to 2 and my CRP down to 4 couldn’t be better...but my serum calcium was high...oh no more worry.  My Dr quickly assured me that they were only just under normal and not to worry we'd just repeat in a month.  But the anxiety had all ready been added to my already growing pile. I had been worrying about having a chronic illness, worrying about administering the meds, worrying about if they will work, worrying about side effects, worrying if they would kill me, worrying about the future if no meds work and that’s without any day to day worrying about family and work. Most of my worry was subconscious I wasn’t sitting around biting my nails but it was simmering away under the surface.   Thursday came and by then I had convinced myself I was ill, didn't know what, but I was ill, so I was worried about that too.  I shouldn’t do my Enbrel - surely? So I phoned the rheumatoid secretary at 8.30am and burst into tears, she booked me in that morning with the Rheum Nurse who was wonderful, she calmed me down assured me I wasn’t being silly, just worried, and I did my own shot. Meds this week 50mg Enbrel and 2mg prednislone.  No pain killers.

But back at home the feeling of being ill was still there.  The turning point that made me look at it was on Friday after tweeting furiously about how I felt,  Lene from the Seated View tweeted me in her calm sensible way and said 'start to narrow down what’s not right then try to think about what makes you feel that way'.  So I did, and I realised that In the midst of this excessive worrying, I was  suffering with high anxiety, I had feelings of doom  and unrealistic fears too,  every time I felt a thump in my chest or a pain in my stomach it  increased my  worries.   When I looked at it calmly and logically I realised that it was GI based and I  came to the conclusion that all of the anxiety I had felt over the past few months starting when I went back into hospital over Christmas with my Penicillin allergy, and probably further back than that,  was causing the GI problems that I was experiencing.  Now I know that worrying is bad for you when it becomes excessive  it can lead to feelings of high anxiety and can cause you to be physically ill so I took action.  Here I was worrying about being ill, the side effects of medication, and a multitude of other every day things that may never happen and in doing so was undoubtedly harming myself in the process.  So this had to stop….What was I going to do about it. .  I tried to calm down, I told myself that my anxiety was making me ill so every time I felt tense I would take deep breaths and let my shoulders drop and I started taking my Lansoprazole in the mornings and I added Domperidone before each meal to try and ease the feeling of discomfort in my stomach and chest because it’s a vicious circle, if I felt symptoms I worried more and  felt worse. I kept myself busy, too much time to think can be very destructive, I exercised, did yoga and started to meditate and once I had accepted that it was self inflicted I started to feel better, the meds were helping and by Enbrel day this week ...I felt ok again, thats just OK, not fantastic, but OK.   Now I’m not saying it’s that easy for everyone and I still feel on the brink of it returning, its simmering under the surface  and if I’m not careful it could break through  but I am going to work really hard at reducing my stress and worrying and thus reducing the resulting anxiety for the good of my future health. I am going to carry on with my GI meds in the short term.

This turns my thoughts to others and It has disturbed me no end that many people on Twitter this past few weeks have been in meltdown, far worse than I have been experiencing. RA Warrior mentioned in Rheum Chat this week that 2 people had attempted suicide.  This is just tragic.  Who has failed these people, so that their despair has spiralled out of control.

So who is supporting the patient with a chronic long term illness emotionally, everyone is concerned about ESR, CRP, joint damage and med side effects but what good is remission of the disease if we are not well enough mentally to enjoy it.  It seems to me that the emotional side is left to those closest to the family and yet these are the very people that very often understand the least.

How are we expected to deal with these feelings? We are living with a chronic illness that leaves many living in daily pain with disability that makes lives near on impossible and fear of the future very real and we are told to make the most of it, it could be worse, be full of hope, it will be OK. We are bombarded with articles telling us we are going to die young, we are more likely to get  cancer, heart disease and whole host of furthers ills and worse still that the very meds we are taking to help us find remission could kill us too  - is it any wonder we are anxious, worried and often depressed.   The physical effort of coping with it is near on impossible when it’s at its peak but what about the emotional side that lingers with us long after our flare has subsided, who helps us then? 

I’m genuinely scared for the many people out there for whom the meds are not working, for the extra worry and anxiety they are feeling, for their despair that nothing can help them,
for the pain that is unremitting and for their fear of what the future holds for them.   I may yet become one of them because I am not complacent enough to believe that because my meds are working now they will continue to do so and I believe that even if my medication carries on working for me this emotional journey will continue to be as tough as the physical one has been so far.  

I don’t have an answer to any of this I just hoped that by writing this  it would help me evaluate all of those lingering questions and fears that have been swirling around in my brain all week and put them into context.

Fear of self injecting, either with a click pen or syringe, is very real for many people, including me,  and at request and in the hope that it will help some to overcome their fear or phobia I have filmed my last Enbrel shot. I have agonised over whether to post this or not my narrative is not great nor is the camera angle but unfortunately by the time I’d reviewed it the shot was done, you don’t get to have another go. Please excuse the very undignified pose and the amateur camera work it was filmed in the interests of education not fashion.

Comments...please, please...I need some encouragement...blogging is hard work!

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!