Having carefully considered my own adverse,occasionally extreme and once life threatening reactions to medications for RA that ive been on and further reading the experiences of others and the huge number of posts on here regarding coping with side effects of meds rather than effects of RA I am fast coming to conclusion that apart form analgesics namely high doses of morphine and tramacet and hydroxychloroquine to which I have had no side effects I am very close to deciding to stop taking any other meds, at least for a while and see what happens. I am already severely disabled and use an electric wheelchair, I am medically retired and fortunate enough to have an adapted flat in a care home, whilst the pain and debilitation caused by the disease have been terrible and life changing the side effects as they seem to be called but main effects as I would refer to them have been the main cause of my other very unfortunate symptoms. I wonder dear friends if anyone else has thought this or taken this action, would love to know before I tell my rheumy where to stick his next experimental script.
Stopping meds except pain relief.: Having carefully... - NRAS
Stopping meds except pain relief.
Hi, I do think about it from time to time as I sometimes feel as if we are guinea pigs till they drug regime working for us. My only point that I want to make and what I remind myself with is this. This site, supportive and informative as it is, is only a cross section of a small percentage of those people who have RA. What I mean is that across the UK there are estimated to be over 250,000 people with the disease and of that number we are only about 3000 here. What I am trying to say is that there are thousands of people who have no side effects from any of the drugs or have been able to deal with them and the disease is under control
Ultimately you need to make the right decision for you and all I would say is make sure it is an informed choice. Try getting in touch with the NRAS direct and get some information and direction you may currently not have.
Also I know when I am in pain and so unwell my rationale goes out the window and perhaps not the best time to make a decision about my health.
I wish you well what ever you decided
Sal
Thank you Sal, partly your response re affirms my decision, I have been in a complete fog, but its caused by the level of meds not the RA, will take your advice though.
Hi. I agree with Sal on this matter. For what it is worth I came off my meds in August because I felt instinctively that certain symptoms might be side effects of the drugs I was taking. I did this with the support of my medical team and really felt I had no choice. But unlike you I am not incapacitated by my RA and have only suffered from RA for a few years - and I wasn't convinced that my condition was aggressive enough to warrant drugs that in themselves were making me feel ill.
I would like to be able to say something definitive about whether my life improved or not as a result of coming off DMARDs but this is still unclear to me. I do know that now, on Hydroxichloraquine 400mg alone, I am not experiencing much joint pain and my ESR has come down to 17 having previously always sat between 26 and 66. But a friend and former GP (also with RA) pointed out than in her long experience of this disease it can fluctuate of its own accord - so it may be nothing to do with the Hydroxy. But like yourself I have found that this drug seems to suit me and so I'm happy to continue with it.
I should add that I have suffered from extreme allergic reactions to everything and anything all my life - currently suffering from severe hives all over my face simply from getting my hair washed and cut yesterday - so I am perhaps not very representative of RA sufferers as a group - many of whom appear to tolerate these drugs quite well I believe. Good luck with your decision. RArebird
Oh honey, you must be in so much pain with your ESR between 26 and 66. I do hope you feel better soon.
Kelsea thanks for your sympathy but my ESR is now down to a princely 17 and I am not in much pain at present. But we all have different pain thresholds too and I'm lucky that mine seems to be pretty high.
However, like Leonvra whose post this is, my ability to tolerate unpleasant side effects is pretty low I suspect!
Thank you rarebird for your response, ive only had this under three years but even with all the meds, dmards, steroids, nsaids and 2 bio therapies the damage has continued, esr never been under mid 30s and ccp2 has reached over 600 frequently, from onset to diagnosis took 8 weeks and within 4 weeks I was unable to walk or turn a key in a door and now live in a care home with 20 + hours care a week so "flare ups" dont really worry me as long as I have pain control.
Well you obviously have a very aggressive RA that has been resistant to treatment so far - and you have all my sympathy. I can see where you are coming from regarding drugs. What is the point of taking all these powerful medicines and putting up with their side effects if they don't seem to be making any difference to the disease activity?
I have had enough of a taste of the pain of RA in the past to know how appalling it can be but also know how awful side effects of drugs can be too. And if you now have all your care needs being met anyway and can get enough pain control from NSAIDs and pain killers then you perhaps feel that it simply isn't worth the impact to your quality of life to add these extras to the mix?
But I would just say that if you've only tried two so far there are more Biologicals you could experiment with and I wonder if it wouldn't just be worth keeping up the search in case one of them happens to be the wonder drug for you?
At the end of the day it's your choice and only yours and I wish you the best of luck whatever you decide. RArebird
Hello
RA sufferers are basically on a hiding for nothing regarding our medications. RA is a problem caused by our immune systems playing fast and loose with our joints, so they need to revert to to DMARD medications that suppress our immune system. we all know what the contraindications are and how severe they can be. They then bring out Biologic medications and they in their own right can also cause problems. I have travelled the DMARD path many times now and on each occasion I have suffered from so much sickness that culminated in my blood count to take a dive.
We take NSID and many of these can also cause problems so we are hit again and we have to experiment until we find a suitable medication.
Now I realise that we all need to take informed choices and the risks we are willing to take to get relief, so personally now I consider what way is advisable and if that pathway is worth the associated risks. Only that patient can make those decisions and generally GP and Specialist will agree with your decision, what is good for one is bad to another patient.
All I personally feel with this we are all on the same journey, we need to accept our lot and decide on the damage we are causing not to take these medications, it is a very personal decision. No one can make these decisions for you so we carry on with care and maintain our conditions as best we can
BOB
Thank you Bob for your realistic and down to earth comments, I agree with you entirely..
i have done this previously for 6 weeks felt great for that time then had major flare then very ill. but will probably try doing without again cant get much worse as at moment flares keep coming. so good luck its worth a try if it succeeds please let me know. x
Thank you Digger, ive never stopped having pain or flare ups through all of this and havnt slept more than 3 hours in 2 years and then only when heavily medicated so aslong as I still have pain control im not that concerned.
I am in the process of doing just that! I am lucky so I have moved to Thasos to stay with my sister for a couple of months and I am currently reducing my med day by day.
I have got to the point where I am convinced that the meds are stealing my life and making me more ill than the RA. I am also detoxing and monitoring my diet closely.
I have been here for 5 days now and am feeling positive, I was going to write a blog later to let people know how I was doing but for this week I a I'll leave it at this.
I have consulted with my GP and after seeing how ill I have been with the meds even he is supporting me on this journey. I an sure I am feeling a tad better S for the first time in several years I feel in control of this horrible disease and I am making my own choices.
And I would be very interested in knowing how this goes for you please keep us all up to date.
1. That is so good to hear.
2. Would your sister like to marry me? (It cant go much worse than the last 2!). Leon.
Be cautious in removing meds. Coming off mtx has caused me a major uncontrolled flare not just of RA but also oa. And I'm finding that pain relief is as much trial and error as anything else. I've returned to symptoms I'd forgotten about, good luck
Cathie thank you for your reply im listening to your warning and especially the OA side which I have historically in one knee but hadnt really considered, im still waiting for Sparklers sister to reply to my proposal! On a more serious note I value highly the answers from all of you, only we know what we go through with this terrible disease and I am so glad to have the support and kindness I have found on this forum.
I am totally allergic to any medications and just use tai chi and massage to keep it at bay. Does not always work but found a super memory foam mattress is the best one I have had. Osteoporosis is also not something I can take a tablet for. Do take vitamin D, calcium etc. Keep a note of any side effects however minor and show the GP.
Thank you SkeggyTai Chi i agree can be a valuable tool. I have the memory foam in a powered multi adjustable bed and have to say it gives me more relief than anything else ever has.
Lol she sais that this island is amazing and there is room for more! I can't however recommend her daily exercise program as after 5 days I am exhausted!
Bless you imreally hope it works well for you judging by the placebo effect I saw on a bbc2 programme recently I guess we have a lot to learn about the positive effects of our powerful subconcious too.
RA first presented itself to me in 2011, so I'm certainly not an expert. I was able to get things "under control" only through meds. I personally feel like MTX are poison-candy, as I got no improvements from MTX, even going to the max dose, only more pain and more affected joints (but at least no adverse reactions to the MTX itself). My relief only came in Sept 2012 with Humira. Humira allowed me to get my life back to a stage where I could start to exercise and explore other means of self-improvement, like through diet. In January 2013 I went gluten-free (well, grain-free), reintroduced all meats into my diet (was previously only eating poultry/fish), and moved closer and closer to a paleo diet. Now I eat nothing packaged, only fresh produce & high-quality meat and fish. I feel that this has helped tremendously. I also take a lot of fish oil & Vitamin D (4x/RDA) and magnesium. For most of 2013, I felt amazing, healthier and stronger than even before my RA. I was able to drop the MTX to 10 mg/week from a high of 25 and remove all pain/anti-inflammatory meds. But then I started a more stressful job last August and stopped working out as much, and I started to experience swollen/sore joints again. Nothing as bad as the initial flare, but I am still trying to get better. I don't know if this is normal or not. I am currently on the Paleo Diet Autoimmune Protocol to see if I can identify some food sensitivities which may be exacerbating my RA, and I'm re-applying myself to exercise - though mostly exercise that doesn't affect my joints (i.e. no weight lifting!). I'm also making sure to do range of motion exercises and to meditate as a means of managing my stress. I don't know if any of these things will work for you, and I don't know if I'm wasting my efforts, but I think it's worth a shot. It would be nice to not have to take any drugs, but for me, I think it's finding a balance and working on what I can control (i.e. diet and exercise). Also, my decision to go grain-free was from finding out my father has coeliac (even though he still eats wheat!) and that it could be genetic (my test was negative but apparently Humira would ensure a negative result no matter what). Finally, after reading Wheat Belly and Grain Brain I am convinced that no one should be eating wheat - but I promise not to judge! Again, I'm not an expert and really don't know what to expect with this disease. Good luck with whatever decision you make.
Wow!. Thanks Karen, theres a lot to take in there so im going to be googling a lot, have tried to be sensible about food as im type 2 diabetic but until RA was super fit and never been over weight and in 34 years of working I never had a day off sick. Now the points you raise are really interesting, im sure diet guidance couldmmake a difference and your stress reference is something ive been concerned about for some time and of course I can see that if stress is an issue and has a negative effect it only makes sense that meditation would have a positive effect. So thank you for your thoughts and observations I will be investigating further.
I'm nervous of talking about exercise on here now in case it makes me sound like a) a fraud and b) judgemental but for me a wheat free, low sugar, caffeine free, low dairy diet, a daily exercise routine including some yoga, aerobics (built up very slowly to this) and tai chi, dog walking plus AdCal D3 are the reasons my RA behaves so well. The only time when the stiffness and pain really show themselves these days is if I get a bit lax on the lifestyle front. Of course I do realise that some people have a much more aggressive onset RA - so exercise is very hard indeed but as long as you try to keep moving within your capabilities and build up slowly I think this might be an effective alternative to drugs - or certainly an approach that helps to compensate for the drugs at least.
PS and of course a good marriage might be the best way of ensuring the diet and the exercise regime are maintained?!
Thank you RArebird, I dont know why you should think negatively about something so positive, when I had the last serious side effects with mtx I made major changes due to the severe gastric problems it left me with, I dropped all dairy and all processed or manufactured food , now either stopping mtx or the change of diet have cured the gastric problems I dont know which and I dont think it matters at the moment. I have also for the last 10 months after 40 years finally given up smoking and as my liver will no longer tolerate alcohol due again to the drugs I no longer even have my weekly bottle of wine. I am now looking into the research done on placebos and hypnosis (not hypnotherapy that is a different thing) and why and how they work and I dont mean if they work because they certainly do, if you didnt catch it the recent bbc 2 documentary on placebos is quite incredible. All the replies have been so good and isnt it interesting that while lots have been cautious no one has suggested yet that im crazy to contradict a gp and a consultant.
Oh I do so agree with you about stopping any more meds. I do not see the point of having side effects from stuff that is supposed to be helping, and ending up feeling worse than just coping with the RA. So I just take Naproxen and pain meds, which take the edge off and enable me to manage - with gritted teeth and determination but no suffering from ghastly "main effects". My consultant wasn't best pleased that I didn't want to try anything else (I may do in the future) but after a whole year of my life wasted with suffering as the result of just 2 injections of Cimzia, I would rather have a limited quality of life with RA than no quality of life with something so horrible that isn't working anyway. Good luck to you and stay strong when you tell your consultant what you want to do with your body!
Well thank you for your reply and your support, given your interest I will tell you more. I had the same with Cymcia, then etanercept and due to infections now have hearing aids and 20% hearing left, then had a good spell which ended in an allergic shock reaction to methotrexate which came on very fast but as soon as realised I was going into shock I summoned help and medic got to me just as I crashed to almost 0 blood pressure and hit me with adrenaline and antihistamine jabs, I crashed again in ambulance and they did same again but had I not of known symptoms I may have just gone and laid down, I wouldnt have woken up, toxic reaction to methotrexate would have killed me, fortunately I knew what swelling and bright red stripes travelling up my body and limbs like a rotating barbers pole meant, I live in a care home due to my disabilities from RA and was able to pull my cord and tell carers who were there in 2 minutes what the problem was before I passed out and I had already done the 3x9 so they just let the medic in and told him what I said and showed him my bio therapies card. What really concerns me is that anyone else under almost any other circumstances would almost certainly have died. I asked a pathologist through a good friend what would have likely shown as a post mortem cause of death, his opinion was that as I only had a normal dose of anything in my system and these were prescribed and without previous problems that it was unlikely there would have been any signs of the shock reaction which had gone on my arrival at hospital and I would have probably officially have died of a heart attack. Now that makes you think doesnt it?
Yes I am also thinking of stopping my medication with the exception of pain relief, etc. I am not so disabled as you are and wish you well. However, I am 77 years of age and taking metoject etc., has been making me feel so poorly I just need quality of life. Fed up with feeling ill. I am seeing my Rhem Nurse next week to see what she has to say. All the very best to you.
yes i have
hi. I really sympathise with your dilemma. I have had so many reactions to ra medications some that hospitalised me with lung problems. After taking seven different biologics and methotrexate sulfazaline leflunomide mycrohenolit and others I thought I would try with just hydroxychloroquine and prednisolone. Two months in I can’t walk and the ra has returned ten fold. I think I forgot what it was like before the medications. Now starting orencia three weeks in and hoping it can bring this under control. This is only my experience. I wish you well what ever you decide
How many people?
Stopping meds with COVID 19
Pain relief
