I have RA and stopped taking Enbrel back in April due to surgery. Since then I have had an infection in the wound area and further surgery, so I have only had two doses of Enbrel in all that time. I also stopped taking Methotrexate about a month ago has I had a chest infection. I am really surprised how well and relatively, but not completely, pain free I am for the first time in almost 30 years. My last operation was 3 weeks ago and I don't know if I should stay off the meds for as long as I am able or to start them again. I am only taking 2.5mg of Prednisilone at the moment for Vasculitis. In the past, if I have had to stop meds for a couple of weeks for some reason or another I have been in pain and can't wait to go back on them again. I am very aware of the complications of RA, but don't want to take extremely potent and very expensive drugs if there is another way...
Medications stopped for surgery : I have RA and stopped... - NRAS
Medications stopped for surgery
stopping medication is silly before a operation not unless surgeon tells you to but its up to you lizzy side affects of other drug stronger ones some people have more than other i had most of them but i have IBS allergy to milk and lactos are on most tablet had load of surgery due to RA and only stopped one tablet ant sick one
Thanks for reply Chris, I was instructed by my rheumatologist and my surgeon to stop Enbrel (anti tnf) 2 weeks before surgery and not to go back on it until 2 weeks after. Unfortunately I then got infections, and on their advice again stayed off of Enbrel because I had to take antibiotics, I also was advised to stop Methotrexate at this time too... the reason being both meds lower immune system and fighting infection is harder. My post was really to see if anyone may have experienced quite amazing changes in RA, or just for some feedback really. I will be seeing my rheumatologist later this year. After 30 years of RA with no remission it's tempting to stay off of meds for as long as I can, but I am aware the disease can appear to lie dormant whilst still causing damage to joints and organs.
hi lizzy sorry i thought youd come off your tablets yourself yes some operations you have to come off tablets yes people are luckly if your in remission but dont always say he gone away well glad your getting some relief might be cos you come of tablets your immune system dropped and why you got infection me im always getting them but not since i was put on Vitimain D tablets tablets as your rheaumatolgist or gp if you are defficent in that hope you feel better soon
Thanks Chris, I have been taking Adcal for a number of years now. It's a calcium and vit D supplement. I believe you need to take vit D otherwise your body doesn't absorb the calcium. Now both are prescribed as a joint supplement. The good news is I had a bone density scan recently as part of my yearly RA medical required by my GP and there is no sign of Osteoporosis 
thats great news yopu havent got that my mom had osteo porosis i get regularly check i take fultium D 800 iu capsules my consultant thinks i have a very rare muscel problem due to one of my tablets but not heard from the last test i have he says i have all the symptoms but there alot like fibro we will see
I don't think it's silly to want to come off meds at all - I think it's understandable and pretty brave - especially because you've had to cope with an operation with additional surgery and infections.
I've only had RA for three and half years and have been off all meds with my consultant's blessing for over two months now with no return of joint pain or stiffness worth speaking of yet. However I'm not that well either and struggling with small fiber neuropathy/ Raynaud's type stuff plus extremely dry eyes.
Previously when I've taken a drug break because of intolerances the RA has come back after 2-6 weeks so I'm getting a little more confident each day that I may be one of the very few who it stays away for but simultaneously worrying a little more that each twinge or ache or increase in stiffness heralds the return like a tidal wave (the way it arrived to begin with). The suspence is doing my head in to be honest - but as I say I'm still relatively new to the disease and as you've had it much longer perhaps it might have burnt itself out for now? What does your consultant have to say?
So far my RA has been non-erosive and I have a fairly broad autoimmune spread. I have noticed that the horrible nerve pain and a rash on my legs which comes and goes, came back when I stopped MTX 9 weeks ago. My GP feels this is a connective tissue thing and I'm waiting to see a neurologist before I start a new immunosuppressant therapy.
I found this link about remission and self management which you may find helpful too. I know that if my RA comes back with a vengeance then I will be offered an anti-tnf because I've tried and failed to tolerate three DMARDs to date - so I'm trying to keep myself as healthy as possible through daily exercise, diet and supplements in the hope that I can perhaps keep it away permanently. I'm not counting on this working out though.
arthritisselfmanagement.com...
Twitchy
Thanks Twitchytoes for all you advice. I am still waiting patiently after 30 years for RA to burn itself out, and I can't help wondering is this it! Although like I said in my post, I am not completely pain free and aware of some mild inflammation going on. Even so, the difference in my joints is quite remarkable considering I am on very little medication. Unfortunately when I was diagnosed the treatment was very different to what it is now. We were started off on the mildest anti-inflammatory, which was increased or changed to something stronger as the disease progressed. During which time the joints became deformed and the only answer was surgery to correct or replace joints. I have had about 12 operations now, and this is the first time I have been able to function on very little medication for so long. Thanks for the self management link, I haven't looked yet, but I do remember taking part in a course back in the 90's which was very helpful. I too try to exercise, although I find I am able to do very little now except swim; and I am aware of changes in my diet making a difference. Thanks again for taking the time to reply in such great detail
I came off my meds as instructed, I wasn't being particularly brave. It's the necessary procedure before any surgery due to low immune system.
You 're most welcome. We are in similar boats in this one respect of whether RA will come back or not. For what it's worth I do remember being in a state of denial (recurring!) a few years ago and phoning the NRAS helpline and asking whether they had come accross anyone who had a diagnosis of RA, for whom it went away. She said that in her experience to date she couldn't recall anyone like that apart from a few people with longstanding RA for whom the disease burnt itself out having munched through pretty much every joint. It sounds as though you might be this candidate but on the other hand probably best not to expect it and have expectations rudely dashed. Maybe its just giving you a holiday at least.
The link isn't about self management really - it is about remission and whether or not this is a realistic goal for you. There's a bit at the end about being off the drugs as we both are - and what to watch out for. I think its probably very much stuff you know but for me it reminds me to stay alert to RA coming back with a vengeance. I don't think my rheumy expects me to last very long! Twitchy x
Haha! I'm pretty sure my rheumatologist will advise me to go back on the meds asap. To be honest, I am hoping like many people, that I will be one of the lucky ones where the RA burns itself out. Although if it attacks all the joints before doing so, I've a few more to go yet! After approx 4mths of no meds, I cannot help but think maybe I am one of those people. In fact, I now recall I stopped the meds in January in preparation for an operation which was postponed, so I have been on very few meds all year. I strongly believe and can testify, that healing takes place on the inside, and surely that must have a knock-on effect on autoimmune diseases such as RA.
Yes I've read a lot of stuff that strongly suggests that autoimmune diseases start in the gut. I'm trying the Paleo diet every other day and generally try and avoid gluten and dairy products and have done for three years now - making up calcium with almond milk and proteins and lots of leafy veg, salads and fruit galore. I still get stiffness on waking and still have fatigue - but tell myself this might be early OA and the Amitriptyline which I've taken now for three years in varying doses. I do muscle work, weekly zumba (that does me in!) and walk the dogs daily.
For me the very worst thing is the parasthesia/ neuropathy/ circulation stuff and it really does make me very low - especially the numbness in my feet. This I haven't got on top of yet but I'm ever hopeful that it might just go away one day soon. My GP thinks it's my RA coming through indirectly as my inflammatory markers tend to be high - but as my rheumy is waiting for me to become symptomatic in the form of swollen joints and I've been told nothing but topical treatments can be done for the dry eyes, then so be it.
If it comes back like a tornado one day then it won't be a huge shock and at least I'll know what it is - and I'm hopeful that NSAIDs or Prednsilone will get it back under control and then I'll go back onto RA drugs. I don't really fear joint pain returning as much as current loss of sensation and sinister nerve pain - but I do hate the suspense with a vengeance!
Oh, it looks like you are really going through the mill, and at the end of the day we can only rely on the expertise of the consultants. Sometimes it can feel we are left without a choice... or indeed a choice that is very hard to make.
I have also been reading about diet etc. I haven't tried the Paleo diet, but I do notice a difference if I eat a diet free from wheat and dairy; or at least eat less of it..
The inner healing I am referring to is a kind of spiritual healing I guess. Leaving me with a peace and acceptance, increased self esteem and self worth.
Those are pretty important things too I agree. X
twitchy i ment if the RA meds are doing you good slowing the disease down good but if they course problem then probably need changing or stopping but some people are silly if they come off if there not bothered and they rather get worst that all i ment ive had RA since i was 5years old but mine got worst since i got to 40 and im 59 and i use work in orhtopeadic at my local hosptial had a fracture spine RA FIBRO 90 percent of both im a borderline lupus and have ibs due allergy of milk and tablets had terrible trouble cos they have lactos in them make me ill any tablet does chris
I agree with what you are saying and I wouldn't stop any meds without being advised to do so by my consultants, that would indeed be silly. Coming off of Anti-tnf is normal before surgery, and stopping Mtx if you have a chest infection is also the usual practice. The reason I posted was because, for me, it is quite remarkable to be able to function on a day to day basis for such a long period of time without taking either of these medications, although I am still taking 2.5mg of prednisilone. It is something I haven't experienced since being diagnosed with RA some 30yrs ago.
Thanks for clarifying what you meant Chris. It is a balancing act. If my rheumy had advised me against staying off drugs as he has in the past, then I would have tried Leflunomide. But because I too have really horrible allergies to drugs, having tried three over three years, we both felt that it was better to see where the RA was going to as my symptoms also overlap with other connective tissue diseases so being off drugs was his suggestion. Otherwise drugs can get everyone more confused rather than helping. You sound like you've had many years at this compared to me. But I've had other health problems since I was young too, including hypothyroidism, so I do know where you are coming from.
hi twitchytoes ive had rheumy since i was 5 i was crippled with it spent a year in hosptial at 18 thought id grow out of it but came back worst mine is lupus and with fibro thyriod but side affects are the worst cos of lactos intolerance yes i know what you mean i they stop mine to give my body a break but arhtrits got worst mine so active know on injection recently for arthristis and immune system is low blood count goes up or down sorry but fibro somertime have fibro fog i know what to right but when i right on pc comes out wrong sorry didnt mean to offend
I'm not at all offended Chris - sounds really tough for you please don't even think about it! Take care. X
I had spinal op and had to be off the meds. I was SO glad to get back on them as I flared after a while. Op was a great success tho so well worth it. Xx
Glad to hear your operation was a success... I am expecting I won't be able to stay off meds for ever, but for now there's hope
I had spinal surgery in March and was told to come off TNF which I did. However, I continued to take leflunomide. I felt quite well RA wise for about 3 weeks and then I went down hill very quickly and I flared up like never before. I've never felt so ill in the 38 years of having this disease and my CRP was 110. I'm fine again now but it took a while for the TNF to kick in again but fingers crossed I'm now feeling great. I'm glad you're not feeling too bad at the moment but I worry that this won't last and you may flare badly. Of course it's your decision about taking meds but be careful, it sounds like you have had a lot on your plate recently and having to deal with more on top of all that would be hard on you. I wish you well - Pat
Thanks for your reply Pat, and yes I am aware I could have a flare at any time, and with avengence. Previously if I needed to stop meds for any reason I would really know about it within a few weeks and be desperate to get back on them. To have a break from any meds for approx 4mths is very unusual, especially anti-tnf and mtx at the same time. Of course I have concerns as I am not completely free of pain, but it is very mild. I am functioning just as well as I did when I was on them, in fact I would say I have more energy. Any difficulties I have stem from joints previously damaged, or from unsuccessful surgery. I believe and can testify, healing begins on the inside, and surely that must have a knock-on effect on an autoimmune disease such as RA.
L1zzy,
You're post is 3 years old, so I don't know if you'll see this, but I've read this whole thread as I'm in the same boat today--stopped meds in May for 2 surgeries. It's almost August and without Remicade infusions and methotrexate, I'm not having flares or pain. Like you said, it's a question worth asking: should I go back on just because? I'm 54 and have been on my cocktail of RA biologics, etc, for 10 years. I've never gone off before. I was prepared to flare and hurt.
I hope you see this post and can tell me how it went for you and what you decided to do.
Linny
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