Stopping all medication

[2plus2]

Has anyone just stopped all medication and lived with the pain. Mtx is making my hair fall out so from this week have stopped it on the consultants advice. A month into sulphasalizine I'm still feeling dizzy when I move. Now I've come out in a rash probably due to being out in the sun with sun protection on because of these drugs. Just feel like the side effects are worse than the pain. Would I be silly to come off all the meds. Pain wise I'm a lot better than I was this time last year. Any advice gratefully received.

[Hidden]

It sounds like you've been having a bad time and I totally sympathise. My hair has also gone very thin on mtx. Every time I wash it I get great handfulls which I have to throw in the bin for fear of blocking the plughole. Having said that it has helped my arthritis symptoms enormously. I'm no longer waking with stiff clenched fingers or sobbing in pain. I think we all worry about the side effects of the drugs but the damage of untreated RA is terrible too. To leave RA unchecked will very likely leave you open to being deformed and disabled. This is not something I would personally risk. Also the inflammation is damaging to the blood vessels and organs in the body so please speak to your consultant and consider very hard before giving up the drugs. I'm not sure how long you've been diagnosed but it does take a while to find the right drug combination for you. It might be worth your while calling the NRAS helpline for some advice.

Paula x

[2plus2]

Thank you for your reply. Diagnosed in December started on mtx in march after a couple of steroid injections. This time last year I couldn't walk very far and my feet were very swollen so when I think back to how I was I am so much better. But now I have other problems from the drugs that in a way make me just as fed up as this time last year. Rationally I know I have to keep going with the meds to prevent further damage but there's a part of me that wants to just stop poisoning myself with these meds.

[helixhelix]

It's a personal choice of course, but do compare having tried 2 drugs over 4 months against the use you'll want to get out of your joints for the rest of your life...... There are about 15-20 different drug combinations, so there are options that might suit you better. So it's not just about whether you can live with pain.

I do know what you're saying re poisoning yourself and there are times when I look at my heap of pills and struggle. But the way I've worked it out in my head as that it's not necessarily forever as my goal is to get to remission, and then reduce the drugs! And really it does get better. It took me well over a year to find a combination that worked, and the RA still sneaks out from time to time, but generally it's ok. Take care, Polly

[Hidden]

Oh 2plus2 you voice all my own anxieties perfectly. I see the rheumy on Thursday so will blog and tell you all what he has to say but i"m in almost the same position as you only with me it's MTX and sickness not hairloss.

I tried Sulpha last year but had to come off after a horrible purple incredibly itchy rash arrived with the sunshine and also I got swellings on my ear and neck so only lasted 3 weeks on it. I've managed 8 and half months on MTX (was diagnosed in December too and went straight onto it) and my RA has all but vanished now, but the price feels very high at the moment. I agree with Paula and Polly basically as the thought of long term damage to deal with in my dotage horrifies me - but equally life is not worth living if we feel sick for days each week or have to cope with substantial hairloss - so there's got to be a middle way?

When I was worrying about hairloss at the start of MTX someone from this site PMd me and told me they were switched to Leflunomide/ Arava because of MTX hairloss and this drug made a huge difference to their RA and the side effects were negligable for them. Worth a thought for you perhaps - you have only tried two DMARDs and there are many more on the list so advise you to keep looking and not to just stop taking medicines without the support of your medical team. Tilda xx

[2plus2]

Thank you again for all your kind words. Spent the night scratching at this sun rash on my arms and legs. Guess I will be ringing the clinic again this morning. As every drug seems to take three months to kick in and several months to leave your system it's a pain having to keep changing them. I may not sound it but I'm normally a happy cheerful person! Thank you again for putting up with me. Xx

[Hidden]

You aren't moaning unduly you know? - that's what this place is for! I feel the same way as you do re MTX because as soon as the antiemetic wears of I feel lousy and sick again. But because I've seen how well it works in the RA I'm going to try and persuade my rheumy to let me take it by injection because that way it bypasses the gut. This may well be harder to achieve than it sounds because of my remote location.

If its just a sun sensitivity rash then it might be worth perservering with Sulpha for now and asking them to add in Leflunomide or Hydroxychloraquine? I have read of people coming right with the Sulpha after a while when their body acclimatised to it? With me it was my GP who prescribed it not a rheumy and it was the swellings on my neck that forced me off it for safety. Report what is happening to you today and see if you can bear to stay on it with some antihistamine etc and perhaps you will just righten on it as others have?

Yes we are being poisoned in a way and it's horrible I agree - but then look at the crap lots of people shove down themselves without a second thought. I don't know about you but I try to balance out the harmful effects by eating really well, no booze or fags and I exercise daily and am slowly losing more weight so I look and feel healthier than ever -it's just the foul taste and current nausea that undermine it and I'm going to find a way around this. Please be persistent and don't give up yet! Tilda x

[2plus2]

Just a quick up date. Consultant has decided to take me off all meds for couple of weeks and see if the rash clears up and then decide what's next. Oh well will just have to see what will happen after that. More uncertainty.

[Hidden]

A couple of weeks won't do any harm and at least he's listening to you. I hope things settle down and please remember to let us know how you get on.

Paula x

[oldtimer]

It's so tempting to come off the medication when it makes you feel awful.

But every time I think about going cold turkey and not having anything, I remember this guy I met at a folk dance two years ago. He was playing the drum - one of those little ones you hold in your hands - and his hands were typical of what RA hands used to look like. He had great nobbly joints and the hands and fingers shooting off way to the side of the wrist. He kept putting the drum down obviously in pain because he couldn't hold it. He was thin and the rest of him was a bit twisted up as well and he looked about seventy. Turns out he had RA for around twenty years, now in his early forties, believed in "natural" remedies only. Used to play the violin....

[Hidden]

Thanks a lot for that Oldtimer - I need this image of the Bodrum player in my head very urgently just now. I found myself writing my list for tomorrow's rheumy apt and saying I was much better now thanks and thought I would be okay to stop taking the meds. It was subconscious because my rational mind knows this would be a nutty and self destructive move but I'm feeling so low and lousy once again after last night's MTX dose - and sure the combination of Hydroxy with MTX is making this nausea worse than ever - so a large part of me wants to be told to bin 'em because I just am finding it so hard to hack. Will keep this pic of the poor thin twisted, drifted man in my mind though because i don't want to be like him ever. Tilda xx

[CaroleHe]

Yes, thank you Oldtimer, that does put things into perspective. I have tried and failed with two DMARDS, MTX and sulfasalazine. My liver can't tolerate either of them. So I have been on hydroxy only for two weeks and I feel well. It has been a relief not to feel constantly groggy and slightly unwell and I feel generally so much healthier. I am waiting to hear from my GP, who is waiting to hear from my rheumy. I have been content not to try to speed things up and I think in the back of my mind I have thought I'll just leave it, perhaps I won't need another DMARD.

But, like Tilda, I now have that image in my mind and, no, I don't want to be like that either.

I am seeing my phlebotomist tomorrow, at my GP surgery, for my normal two weekly bloods and I think I had better have a chat to her about what comes next. She is very proactive and a great source of support, she may even have seen my GP before I get there knowing her!

Carole

[2plus2]

Good point old timer. Call me a contrary Mary but I feel bit sad that I have now had to stop both meds. I really struggled and persevered with the side effects in the hope that they will work and now I feel back to square one. Have kept out of the sun but rash/blotches still on arms.

[Victoria-NRAS Partner Moderator NRAS]

Hi

I'm really sorry to hear about the problems that you've had with the medications, and every drug you take that gives you a side-effect will of course make you that much more anxious about the next drug, and less hopefull that it will work. However, the drugs do all work differently, so the fact that you've had such poor reactions to these 2 drugs does not necessarily mean they can't find something that will work.

The problem with putting up with the pain if you stay off all medication is that you are also allowing the disease to progess in the body, potentially causing joint damage and other complications, so even if you feel you could cope with the pain as it is now, the problem would be coping with it if it progresses.

As Paula suggested, we would be happy to talk to you on the helpline if you want to talk this through in a bit more detail. We are available 9.30-4.30 Mon-Fri on 0800 298 7650.

Kind regards

Victoria

(NRAS Helpline)

[2plus2]

Thank you Victoria it's a great help knowing people are around to talk to.

[magglen]

Please don't stop your medication which is not only for the pain but to prevent damage to your joints and possibly other organs.

Do you have an RA nurse you can talk to? If not, get on to your GP and see if he can get you an appt with the consultant. xx

[anneileen]

Just saw your question and wanted to offer you a bit of my own experience. I was diagnosed with RA over 20 years ago. I have been on many medications in the early years, including methotrexate. The drugs scared me so I stopped them all. I was not afraid of the pain anymore and wanted to see how i got on. Long story short: I treated the flare ups with pain meds only, over the last 10 years. I have coped quite well up to now but i have been lucky not to have any deformities. It depends on your quality of life without the drugs. I am glad i came off them even though now i have had to go back on them due to other problems i.e. I have developed a lupus type disease and neutropenia. I will never know if i had continued with the meds would i still have developed these new conditions. This is something the consultants cant answer so you have to do what you have to do and make the best decision for yourself and then just go with it. Good luck and best wishes.

[Maggie1]

i wish i could come off of everything too!! but the pain just overtakes me and makes me feel really sick and fed up, i think the sad thing is that yes there are other meds out there but my rheumy only wants to use Methotrexate and doesn't seem to be able to want to prescribe anything else....if you weigh it all up it has to be your decision and as anneileen said before me there is no way of knowing what's right or wrong.

i suppose the pain can make you feel alive!! where as the drugs just make it all foggy...

good luck and best wishes to you.