Off meds and would like to stay off.

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I have been off my RA medication for 2 months now. Since at my last 2 appointments with the RA specialist when he said I was doing well, had no swelling and therefore could presume I was in remission. No blood tests were done at the time just results from last ones I had done were taken into account. So a couple of months ago while seeing the RA nurse having given it a lot of thought I decided to ask her if it would be ok to stop taking the hydroxychloroquine (Plaquenil).She said it would be ok but if I was to have any problems or get worse to get in touch and I could go back on. She did say people who come off their meds usually end up going back on them within 5 months which I found disappointing to hear. If I remain as I am I'd like to think I could stay off it forever.I have made a few changes health wise such as exercising a bit more, losing weight, no caffeine and cutting out a lot of rubbish I was eating. I've never felt better. Get far fewer headaches now. I do still get very tired and have the odd painful joints but nothing I feel I can't manage. I just have a niggling worry that my positivity at the moment is perhaps blinding me to the possibility of future joint damage. Has anyone come off of their meds and remained off them? Any feedback would be useful.

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  • Posted

    Hi Debra. I am so pleased to read that you are feeling so much better at the moment. It is good to feel positive. It is only natural to wonder if things will change again in the future. I would try to take each day as it comes and try not to worry. The truth Iis that nobody knows if or when you may experience a flare up of your RA, as unfortunately it is a chronic condition with no cure at the moment. So carry on with the steps you have taken and enjoy your time smile

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  • Posted

    That is wonderful news!  I hope that it continues to go well for you.  Would having frequent blood tests help to monitor your progress and enable you to catch any downhill activity?
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  • Posted

    Hi Debra.

    Interesting post. And I was here wondering I was the only one. I thought exactly like you many moons ago. So I took the plunge. My mistake was not telling anyone. Believe it or not I did 8 years. No tabs no medication nothing. I'd had enough of doctor's nurses drugs hospital the lot.everything fine. Then the pain hit me. And I mean hit me. Ended up in hospital. Nurses wiping me down every day spoon fed. All for 4 weeks till I could fend for my self. was it worth it? I still don't know. Only you can answer that. But 80% of me says I won't do it again. Hope that helps. Take care. X

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  • Posted

    Hi Debra, off meds for about 7-8 months, maybe a bit more, after 2 biologicals didn't work and my Dr. told me to seek help elsewhere as my sympthoms and side effects are too abnormal. Went vegan and still don't eat meat/diary products most of the time. It hurts. A lot. One of my fingers keeps bending. Knees are bad. But it is not worse than when I was on biopicals... Don't know what will be my next steps yet, but I no longer believe in meds that much. Glad to hear that you are fine by now. Hope that it will continue with a healthy lifestyle. Joint damage may or may not occur in your case. Only time will tell. Good luck! Keeping fingers crossed!

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  • Posted

    Hi Debra, I have a friend who has been off her meds for a while and just takes about 12 Omega Three fish oil tablets per day. She says that all she needs to keep her inflammation levels down. She has always been ultra fit and slim and except for a knee causing problems (she ran at least 5k every day and She's in her late 60's) she is pain free.

    I'm not sure I'm brave enough to go it alone, I had my MTX dose lowered to 10mg because of liver damage and the pain was bad despite being on Cimzia injections too. I've upped the MTX to 20mg again.

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  • Posted

    You ve had some interesting responses! Was it only hydroxychloroquine you were taking? If so you were fortunate your RA has been controlled by 1 of the milder DMARDS .So you may well be in remission. I am too though mine is medically induced. I don't see a problem with taking meds if needed if the end result is being able to do all the things you want to physically. So, with or without hydroxy- enjoy your pain free time.....oh yes and I ve done same things with you health wise and I do think it makes a difference and keeps a kind of equilibrium

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  • Posted

    It's been really interesting reading all the replies. Thank you everyone. When I was first diagnosed 8 and a half years ago I was put straight on Methotrexate..tablets then injections..But eventually felt so rough had to stop and was offered the choice of 3 other drugs. I chose Hydroxychloroquine.Apart from stripping the colour from my hair and a bit of sensitivity when in the sun I really didn't seem to have any other problems.Im on other meds too, beta blocker for PAT, blood pressure pill and statin.. so I tend to put down feeling cold and getting very tired to the beta blocker. I was diagnosed as RA positive with a something or other of 1:64 which I was told was very high. The rheumy said the type of RA I had could develop at a worse rate than someone who was RA neg. I always remembered that so 8 yrs down the line was surprised when the nurse said to me she thought I probably had a mild case of RA. Hopefully I have. That sounds terrible what you went through Ian despite having 8 good years off meds. It's all making me think and I know if my situation changed I wouldn't be silly and ignore any serious pain/flares/blood test results and would go back on the hydroxychloroquine.

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    • Posted

      I went off the meds after 2 yrs of being on MTX and injections. i went into remission for at least 3 years. But like Ian - it hit me so hard I ended up in hospital. 5 years on now and have decided to come off the meds again. Is it a wise decision? to me yes because I am so sick of medication hospitals etc. I have started a healthy diet! I got a flare the other day but it was nothing and manageable. Good luck with your journey.
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    • Posted

      I apologise if this sounds dumb as I'm so new to ra. Everyone talks about flares-would you describe what a flare is exactly. Do you mean you have been without pain and suddenly you have soreness? 

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    • Posted

      Hi Kristi.

      You need to remember everyone experiences things in different ways.

      For me most days means I get by in pain from multiple areas, but it's bearable. Every day I feel pain somewhere. somedays I cope somedays I don't. But for me a flare is totally out the blue. There's no rhyme or reason for it. You've been taking your meds and yet you wake up and wham!!!!. It feels like you've overlooked something. Try as you might, you can't work it out.youve done nothing different, but this happens.happily for me it goes after few days and settles down. That's after feeling generally unwell. Bit like a heavy cold.its at these times I wish I were a hedgehog. Just sleep all through it. But alas no. You learn to grin and bear it. That for me is a flare. Nasty? Yes! But I get through it. Just like you will. Trust me you will. Hope that helps. Take care. Keep well.

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    • Posted

      Funnily enough I answered similar question few weeks ago. I've been diagnosed RA for nearly 30 year. One day I made decision to go cold turkey. 1st it was great. What's the fuss? Then I started to get very achey. Still I carried on. No meds. Got worse. Still carried on( I'm cutting a long story short here). Next thing I know I'm in hospital. Looked after, washed everyday. embarrassing wasn't the word. Anyway nurses, as usual did cracking job, got me back on my feet. All in all, off meds 8 years. Everyday I ask same question. was it worth it? some folk would jump at it and say YES!! Me? it's me that did it. And my answer? I honestly do not know. I can't describe the pain I experienced. I think a better question is would I do it again? No. I don't think I would or could.

      Hope that helps. Ian.x

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    • Posted

      I'm on 50mg gold injections a month. Least I think it's 50mg. I normally use pounds and ounces, you know how it is. I sometimes have to pinch myself I went that long. Remembering it is like watching a film or it was seeing someone elses life. I suppose it was part stupidity, part desperation (I was so sick of meds, doctor's, hospital clinics etc) determination oh and don't forget sheer damned luck.

      Anyway..Hope you doing ok.you sound like you are. Take care. And remember..Try not let it take over your life. You are not defined by having RA! You are defined by how you decide to put RA in its place! Take care nice to hear and speak to you. All the best. Ian x

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    • Posted

      Hi Emily.  I think for most of us flares means a worsening of symptoms - which means swelling, stiffness and pain.  For me the mornings is when I take my symptom temperature, so to speak - I'm always worst in the morning, so I wiggle around and see what is sore.  I have a sort of baseline normal level that is quite manageable- I'm always a little stiff and sore, but very minor.  A flare for me would be a day that I woke up with more serious pain and stiffness.  Then I know I'm in for a harder day - maybe some limping, maybe not able to use my hands quite properly.  A flare might last a day or a week.  Everyone is different, but that's my experience.  

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