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.