Haven't posted for a while, so here goes! I made a decision to stop taking any Rheumy meds AGAIN - this is my second attempt at going drug free. I can honestly say that my quality of life is better - i.e. I can go out and work 40 hours each week, run my house almost normally and have a bit of my party animal lifestyle back (although high heels are now definitely out of the question!!) The drug side affects were making me so ill that I could hardly motivate myself to do anything. HOWEVER - I've noticed that my fingers have got more lumps and bumps on them than ever and I now have no ankles at all due to permanent swelling. I'm only 3 years into the disease and can't help but wonder if I'm doing the right thing. My GP can't get on my 'if I ignore it, it will go away' line of thinking. Still don't know what I'm going to do. Tough decisions ahead methinks. Be healthy and happy people
Mandy
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Mandos67
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Hi Mandy I respect your decision. The reason I will take my drugs despite side effects is that most of my family have RA. They got it before the advent of new drugs and they have so many joint deformities and surgeries I can't tell you.
Can u not have a chat with your Rheumy and tell him of your side effects and ssk for different rather than no treatment? My Rheumy swapped my mtx as I was so sick and he said that I would be on them a long time do he would rather I was comfortable on the meds . The ankle swelling doesn't sound good, it may be causing harm to your joint?
But hope you feel better soon Axx
Hello
Generally I would say what suits one
When I read your post above I thought,withdrawal of medications here seem not to be a good idea. Because you have stopped taking you NSID your joints are beginning too swell, this will cause further RA damage
In the fifties,sixties people had very few drugs that reduced the swelling in RA joints,so there was much more deformed joints. Now it has not stopped crippling damage, it has slowed it down,and we suffer less pain.
Personally I would never say do not take your medications I am not a GP. we make calculated decisions regards our medications With your condition now I would start at least the NSID again, with Pain medications as required.
Ask the GP if you can join a pain clinic, they will .modify you medications, train you in relaxation techniques and show you how to use a TENS.
Today they can do some remarkable repairs and replacement of joints,the problem with it is they only last for a certain length of time, the number of times they can replace a joint is no more than 2 or three times. So again your choices are limited.
Granted the medications cause problems in the blood, also can cause problems in stroke and heart your organs can also suffer, It is a choice we need too take as if we do nothing can be just as severe. In the early 70s I knew someone whose mother had problems with her hip, she died of infection. in the replacement hip.
Personally I would and do take my medications as we are now living longer,so we need to be able to get around for longer
You are an adult you make decisions, and live with them, I have given you reasons why you need to take your medications. That is all I can do.
RA is an incureable disease, and will progress with it, s nasty work for the rest of your life. The only certainty is that parts of your body WILL be ruined.
Not taking any meds will not make it go away, and because you are not taking anything will increase the likelyhood of flare ups... and they can be utterly agonizing (just had a 2 week hand flare up).
I think most on here would agree that we hate taking meds, we hate the side effects etc, andwe would love to be free of drugs. But we have to accept that the drugs will slow down the progression of the disease, and that they will improve the quality of our lives.
You say you already Re seeing body changes... these will probably worsen as time goes by without meds. You may be feeling great right now, but in theory, you could be very disabled in the future, and not have any kind of life.
I think that until the right drugs for you are sorted out, you will have to put up with maybe not feeling as you wish, but hopefully, when the clinics have 'got it right', you will find that life can go on as normal..... because without treatment, you will not be working 40 hrs a week, you maybe lucky to get 40 minutes worth if the RA really takes hold.
Sorry I sound doom and gloom, I hate taking the drugs, but at the moment, because I had to stop everything except mxt, I am really suffering big time.. extreme pain, and fatigue thatnis so bad I cannot do much at all. I am just waiting for an appointment to start another bio logical drug, and I am verygrateful that there are so many things out there to help me.... and if this new one works, then I can get my life back
I think you need to have a good honest talk with your rheumatologist and discuss your feelings .. theremwill be a solution that you will like, its just a matter of trial and error until you find it .
I think the most important thing is to talk to your rheumy about what you're doing and get him/her to accept that it's a decision that you need to make. That way you haven't closed any doors off if you change your mind in the future, as sometimes if you just stop taking things that have been prescribed for you the rheumy gets fed up and closes your file, which makes it very hard to get another appointment in the future. It would also be worth asking whether the rheumy thinks you have an erosive or non-erosive RA. As if yours is fairly non-erosive then that gives a greater chance that you can manage without meds without getting lots of damage (can still hurt like #%^*+, but less deformities). But if the rheumy says that they think you have an aggressive and erosive RA then really do think again, and ask what other options there could be for drugs that might suit you better. Who knows, if you talk to the rheumy you might find that they agree that a spell with no meds might help clarify things. Good luck. Polly.
I can remember my gran's hands and feet. When I was young, her hands drifted off to the side and she couldn't straighten them. And her feet went over so it looked as though she was walking on the sides of them. That's because she didn't take any meds - but in those days they didn't have the DMARDS and biologics that we have now. Their main aim - I think - is to try and prevent deformities.
My mother had at least one toe amputated because it was crossing over another. Horrible. But, I can understand reluctance to take meds - I have to recalibrate mine because of some possible damage to my liver. This can be made good, I understand. We do face this very tricky balance between well being with the RA and taking very powerful meds. Not an easy call. I thought this through at the outset and remembering my mum's joints, decided I'd go for meds + well being now and face the problems down the road. Side effects make this more difficult.
Definitely tell your rheumatologist that the reason you are stopping RA meds is the horrible side effects. It may be just the trigger they need to start considering anti-tnf treatment for you - which has few if any side effects in most people. The DMARDs are great if you can find one that you can tolerate and that does the job (which some folk do), but I do think that in the UK rheumatologists persist with encouraging people to keep taking DMARDs for far too long when they have awful side effects before moving to anti-tnfs.
I can really sympathise with not wanting to take the medication when it makes you feel terrible. I have often decided to give it all up, only to give myself a good talking to, and then getting my treatment changed.
But being over seventy now, I have seen so many people really crippled through RA.
When I was first diagnosed aged 37, I was a patient in a teaching session (having classic joint swelling to show them). One of the students asked what my life expectancy was - the answer from the Registrar "Oh, mid fifties if she's lucky".
But I have been much luckier than that - treated aggressively with every flare, exercise between flares and a mediterranean diet all the time and determination to keep going.
Hi Mandy I've tried a few dmards and couldn't tolerate them because of horrendous side effects. Like you I felt better in myself not taking meds...but as My consultant explained to me if I didn't take some ra medication to help slow this disease down my ra would become aggressive over time. He wasn't sure as to what med to give me...and the only one left for me to try on dmards was the old gold injections. I was very concerned and worried at the same time because of nasty side effects but we have to out weigh how nasty this illness can damage not only the joints...ive decided to give these injections a go as im hoping they are going to help me. Ive taking the consultants advice and how he clearly explained to me i had to take something. My advice to you would be chat to your rheumy consultant so you have some plan to help you good luck Nicola x
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Will there be a light at the end of the tunnel?
Not well at all friends......
Fed up with it all
New meds and trigger thumbs.
