Hello

I was diagnosed with RA in March last year. I was put on etanercept and Methotrexate as part of a clinical trial in May 2010 and I stayed on the trial until May 2011. I had some Xrays done before starting the trial and it showed that I had no joint damage in my hands or feet. Initially the drugs worked really well and I believe my RA went into remission. In March this year I started to get some pain in my left wrist. I saw my trial nurse who told me to rest it and wear a splint which I did (unfortunately she could not give me a steroid jab as that would have gone against the rules of the trial). So I came off the trial in May this year and was put back under the care of my local NHS consultant. He took a look at my arms and told me there was little damage though my left wrist looked slightly swollen. I was put on 15mg MTX and naproxen. The next appointment was to meet with him in November.

During the summer I noticed my left elbow was bent out of shape and both of my wrists were now stiff. My GP noticed that my inflamation markers were raised during a routine blood test in September but when I mentioned this to my rheummy nurse she said oh it is high (30 I think it was my ESR but not sure) but not that bad so did nothing. I subsequently started to see an NHS physio who gave me a number of exercises to improve shoulder, elbow and wrist mobility. I did my exercises faithfully but there was little improvement and I started to get sore feet as well. Anyway I last met with my physio at the beginning of Nov who then told me it looks like the damage has been done in my left elbow and wrists and we should now work towards ensuring no further damage is done to my other joints . I then went to my Rheummy appointment last week and he also told me "oh the damage is now done" in your arms, your disease is not in remission and then decided to put in on sulfasalazine as well as MTX. My next appointment will be in April 2012.

I am wondering if this is a normal set of events and do people continue to get joint damage after diagnosis and when on medication. I guess yes otherwise people would never progress to biologics. Should I be more proactive and call the rheummy nurse in between appointments if something is clearly going wrong and my disease is still active? I am single and still work so I really want to stay as active as possible. I understand that I have to leave some time for medication to take effect but I am really worried that this disease will soon spread to both arms and make them difficult to work with. Should I be referred to an OT for my wrists. I am concerned about wearing splints since I believe wearing a splint for several weeks on my left wrist is what caused it to get "stuck" in a bad position. I am wondering if I have a case to push for etanercept now. I got it as part of a trial and initially it worked wonders for me so I know I could tolerate it. My wrists and left elbow are now constantly sore and stiff that I am not sure if this is just normality for me now or if this is sign that they are just constantly flaring and need to be managed better.

I look forward to hearing your comments.

Thanks

Agnes

Thanks for the reply Ailsa. You seem to have been on a lot of drugs already given that you were diagnosed the same time as me. Good luck with your first infusion.

By the way I think we have met already. I used to post on here as agneso but changed my posting name to Manee (my cat's name). I am not sure if my old posts are still on the boards or not.

Sorry I can't offer advice here. Thanks for raising this issue as I too am in continuous pain and often wonder if it is a sign that irreversible damage is occurring. I will follow this thread and hope for answers too.
Best wishes from Naomi X

Hi Agnes

I remember you posting previously and the discussions about the trial you decided to go on. I believe that, unfortunately, many trials do not take sufficient account of a patients actual needs and often can be entirely dismissive of a patients requirements. They are aimed specifically at finding patients who meet the 'criteria' for their particular trial. Some will do well, others won't! One of the recent trials has been a study the efficacy of anti-tnf treatment in newly diagnosed patients. Is this type of treatment more effective than DMard treatment? Early and successful treatment is key where RA is concerned otherwise the risk of disease progression and joint damage becomes very real.

One of the problems, and I now know this to be true from my own experience, is that once you have tried an anti-tnf, such as Enbrel, and then come off it, there is evidence that restarting the same drug is less effective. I had to stop Enbrel in July 2010 for surgery. When I restarted, 6 weeks later, it was out of my system and had lost its efficacy. I have now started Rituximab after 15 months of relatively uncontrolled RA and yet more damage!

There is no cure for RA and it is progressive, however, appropriate drugs will slow that progression but damage MAY still occur. It sounds as though your consultant has decided that DMard therapy in combination is the way forward. You do need patience though because all these drugs can take up to 3 months, sometimes longer to work, hence your appoinntment in April, I would think! You should be on regular blood tests, two weekly to start with, and you should have been given a monitoring book to record the results. If not do check with the rheumatology nurse because this is standard practise and the only way to monitor the success of the drugs and possible side effects. At your next appointment your consultant may choose to add in a further DMard or consider an alternative treatment.

An OT appointment would be useful as they can offer advice and information on protecting the joints. Joint damage doesn't happen overnight, it is a long, slow process often over many years. It could be that your current problems are due to active uncontrolled disease rather than joint damage. Do keep the pain relief topped up as this will help; pain can become very wearing and soon drag you down. Try to maintain function by regularly mobilising the affected joints ie try not to let them stiffen too much, easier said than done sometimes I know!

I hope the drugs soon start to take effect and you begin to see some positive results. Do let us know how you get on

Lyn x

Hi Agnes, Sorry to hear about the problems you are having. I think it would be a good idea to see an ot as they can help with splints gloves and help with appliances in the home and at work to help to protect your hands and arms from further damage. They can also help with coping with fatigue.

Bevxx

Agnes,

I think I am where you are. I was diagnosed in October 2008 and have been on MTX, Sulfa and HydroxyC for ages now. I saw a hand surgeon last week and he told me that my MRI shows the diesease is still active in my wrist. I am having surgery towards the end of February as a result so in my experience joint damage can still occur when you have been diagnosed and are on medication. As a result I am going to challenge my rheumy team as to the adequacy of my response to DMARD treatment.

Hope your diesease is brought under control soon.
Ju x