Too scared to take medication!

After a horrible experience with sulfasalazine, I find I am too scared to take my new meds.

I got my new prescription from chemist today (leflunomide). Anything ending in 'omide" freaks me out for a start! Then I read the list of "possible" side effects. Oh dear. Now intellectually I of course know that it is only a list of possible side effects, and I might not get any. But, the awful time I had with sulfasalazine (pretty much same side effect profile) is very much still in my mind. I can't go through that again!!

Apart from the dog, I live on my own. Family and friends are a good car drive away. Does anyone else find these drugs a bit scary?

Of course, I don't want to be crippled with pain again, and I know the disease will only get worse if I don't take a dmard, but still, I'm scared.

46 Replies

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  • Please ring the NRAS help line so that you can be put in touch with someone actually taking that drug.

    You might also like to compare the side effects with something you have taken previously like aspirin or penicillin - it's pretty scarey whenever you read all the "ever reported" effects! Knowing that you have taken something that is potentially toxic before without ill effect can be reassuring.

  • I take it and have done since Oct 2014, all medications and particularly the ones we all take for granted have side effects last year 8 people died from Aspirin and my GP said 25 fro paracetamol. So stop reading and frightening yourself if the odds are that 1 in 10 get effects then 9 don't !! Its never easy to take anything new but this stuff has put my RA into remission and I have a normal life. No swelling or pain at all a bit of fatigue sometimes thats about it. Take it with food and a large glass of water no problems at all. At first there was side effects and it hurt a lot but then one day everything just sort of went normal and I got up with energy and went for a walk, over the next few months it settled down and now I'm just careful if I get a cold etc. and if in doubt see my GP. No problems at all now and remember it can be washed out so try not to obsess with the PIL with the medication and read the one for Riveroxaban which I also take that is much worse. Its really about risk, the risk of side effects is worth it if you actually if the long term you benefit. So my advice is from personal experience and so whilst I'd never offer medical advice as they say because this drug does cost more, its because I'm worth it. xxxx

  • Thanks very much for reply.

    As I said, I know very well that the list of side effects is a "possible" list, and I might not get any. However, I have had serious reactions to quite a few meds. I have become a bit tired of side effects being dismissed by doctors.

    We are all so very different, and clearly what works well for one person, does not for another. A friend of mine is fone on sulfasalazine. I had a horrible time on it. It was in fact worse than the original illness!

    I am not anti medication, simply justifiably nervous.

    Of course all drugs have side effects (paracetamol is lethal in overdose) and some folks may have an allergy to it. Equally Some side effects may not be reported.

    But...I don't want to be so stiff I can't get out of bed.

  • I have allergies its not fun at all. I do understand and I hesitate over antibiotics because of a penicillin allergy. But LEF has changed my life so try to be optimistic if your able to take it it changes lives for the better. After the pulmonary embolisms I had last year (down to RA) I know that my life is a bonus every day. I can't have any so many antibiotics it's a joke - almost. Be warned LEF made the pain of my RA worse after about 2 weeks and that lasted for a week or more then it just went.

  • Thanks so much for telling me about extra pain! I had unbearable pain with sulfasalazine. Good to hear that it wears off. Brave of you to ride the pain!

    I have taken first pill this evening😄.

  • Try not to worry and make sure you drink it well down as well. Tastes vile if stuck !!lol The consultant said would you have taken it if we said it hurt more, actually yes because it worked for me. Let us know how you get on but be patient it does take a while to get into the system. Its given me so much more energy and if I was not taking it I would not know I have RA. (Not on commission by the way ) xx

  • Hi Medway-lady that's so encouraging. Can you remember when you felt 'normal'? I'm 6 weeks in to taking methotrexate and can't see the light at the end of the tunnel yet? Xxx

  • I could not take MTX hence changed to LEF which for me is great. I had no sickness etc with MTX but my hair fell out in handfuls so it was stopped by the RA consultant as he thought I was hypersensitive to it. I'm so glad the LEF works so well.

  • Goodness how soon after taking mtx did your hair fall out? I just wondered generally with treatment how soon you felt normal. How long before you felt well on LEF?

  • After about 2 weeks on the MTX then about 6 weeks on the LEF.

  • What is Riveroxaban I havnt heard of that one. So do you take the Sulfasalazine with it.

  • My RA affects my blood and I've had clots in my lungs, legs and arms hence I get worried as RA does not just affect the hands or feet etc it can have a hidden impact. So I have to take Riveroxaban for life which is a new blood medication that prevents thrombosis. That drug has to take priority over all else thus its vital to keep my RA under control and my blood normalised or more clots and potentially death. The Riveroxaban limits some RA meds and its a designer one. It is my worry that in treating RA with lifestyle choices such as diet the effects we I can't see are not treated at all. I'm celiac and have pernicious anaemia too so see 2 consultants on a regular basis who fortunately talk to each other. I'm just so glad to be a)alive, b)pain free, and c)active and cheerful.lol xxx

  • Good luck with Leflunomide. You did well to get started despite your fears.

    I've not had any serious side effects from drugs so haven't walked a mile in your shoes, as the saying goes. But the way I look at it is that the disease itself has serious side effects, except they are not side effects, 'core effects' more like. All you can do is give a drug a try and if there are problems then you can stop that drug and try another. There are enough options for that to be a realistic course of action.

    I reckon one drug that is problem free would be enough to settle your mind and calm your fears. And I so hope this one does that as well as help with your RA.

  • I have been taking leflunomide for over 4 years now. I have had no side effects at all, and it has done wonders for my pain and swelling. I also take a biologic (currently Xeljanz).

  • You don't say what the new drug is called.I am on sulpha,mtx,hydroxychroloquinne as well as the usual pain meds. I haven't had any side effects from these.xxxx

  • Sorry i didn't read it properly and i can't answer this question as i am not on it,sorry drling.xxxxx

  • Hope you woke up feeling just fine today!

  • I can sympathise with you on the side effects of sulfasalazine. I had a similar experience, the most serious of which was a lowering of white blood cell count. I've moved to another medication (not the one you speak of), and haven't looked back. Unfortunately, it is trial and error finding the right course of treatment and I can only wish you good luck.

  • Any side effects scares me but you have to be rational.It doesn't mean you will be the same this is a different drug.At any sign of problem contact your rheumy nurse don't suffer.

    I would rather be out of pain than scared.

  • Hi NettieC

    I too had a terrible experience with Sulphasalizine.....& although I had vowed I would NEVER take another 'dangerous' drug my Rheumy said "just try Mtx" so I did & I took it - very successfully - for 7 years.......with RA I decided I would either be in pain, have joint damage & generally live a miserable life, or I would listen to my Rheumy & hope he got it right!

    I toyed with the idea of drastic dietary changes, but on researching what was on offer it sounded so ghastly & there was no clinical evidence that it stopped joint damage I took the medication route

    I've had RA for 17 years now & I have very little joint damage ...I have just started on Biologics & like most I go up & down, but with the help of sometimes scary drugs I am really able to enjoy my retirement ....I travel all over & I do have the odd blip,but I honestly think without the trial & error of taking scary drugs I'd be in a very different place!

    Only you can decide if you will try Lfl.......I do hope you feel able to try it.......but if you can't bring yourself to accept it - talk to your Rheumy nurse & see what she recommends.

    I wish you good luck.

    AC

  • Hi Nettie C

    I can sympathise as I have been allergic to all the drugs tried so far for me which is sulfrazalizine, hydroxychloroquinine and oral methotrexate. The last on put me in hospital. Everyone is different however and my rheumy nurse said you just have to keep trying until you find one that's right for you. Most of my side effects are stomach related so I am now waiting to go on methotrexate injections. My nurse says there will always be alternatives and if the side effects are too much then the drug is stopped and another one tried.

    Good luck xxxx

  • I took leflunomide 30mg (which is a high dose) a day ftomorrow 2000 until a year ago. I didn't have any side effects. It's understandable to be scared after a bad experience but this disease is so awful if uncontrolled and the damage it can do that you can't see or feel until it's too late is much worse than the side effects of the drugs.

  • Oh I really can empathise. I had a hideous and scary reaction to sulfasalazine too and a bad reaction to a previous drug. ( the hydro one sorry can't spell it off the top of my head ) and cannot bring myself to try any of the others. The trouble is is that these are toxic drugs and it is the person who takes them who has to bear the side effects.

  • Really sorry that you have had a bad time too. I hope that you're OK?

  • Hi Nettie, thank you for your message. Yes am ok but very restricted. Have started acupuncture and it seems to help. Hope you are getting on ok. Would be interested to hear how you get on with leflunomide as that is the other choice they are giving me. Sending best wishes.

  • So sorry to hear things are still a bit rubbish. Hopefully you will soon feel better.

    I am as high as a flipping kite after my depot steroid. I got up at 5am, and turned up at church an hour early! No pain!! And no stiffness!! But as mad as a box of frogs!! 😄

  • Hi, I can understand your apprehension fully. I have taken leflunamide in the past with no side effects. I was on an anti TNF and the side effects were awful and took a considerable time to get out of my system. I think you have to try to be objective, very difficult I know. How many have you to take? Perhaps start with one and build it up as your confidence grows. These drugs all affect us in different ways and you just have to try. Very easy to say. I hope all turns out well. Look after yourself.

  • Give it a try and see if it helps. If it doesn't help, stop taking it. If it does help, and you get side effects, measure these against the benefits. I feel it is always best to have a break from drugs and let the body recover and also to change drugs so that you are not doing damage to one part of the body all the time.

    I use other things like electro acupuncture and Chinese herbal medicine - some people are even frightened of that.

  • What Chinese herbal medicine do you use?

  • I get tablets from a Chinese shop/clinic based in Kingston on Thames/Sutton/Croydon/Putney and they also have a shop in N.E. England.

    The composition is Danshen/Dong Quai/Frankincense/Myrrh/Liqorice and they are wonderful. However, I cannot get them any more in the UK because EU regulations have put a restriction on their import into the UK - ie a £30,000 pa licencence fee per tablet type. Once we are out of the EU, they can be imported. Otherwise, I have to go to China/Hong Kong. I found them wonderful. I suspect the main active ingredient is Dong Quai and I am trying to get this over the internet.

    Apart from the wonderful effects on arthritis, they have wonderful effects mentally - really good cognitive effect and also improved thyroid function.

  • I live in the U.S. We have some vitamin shops that might carry it. If not, there is always Amazon. I have tried several supplements but have found turmeric to help the most. Fish oil helps as well. Currently I am not on any RA drugs that was why I was so I interested in what you were taking. Thank you for taking the time to reply.

  • Yes, I thought fish oil helped. I was diagnosed initially with gout so I went on a purine-free vegetarian diet: the condition dramatically worsened and I suspect this was because of the lack of fish (I very rarely eat meat but I do eat fish almost every day).

    Turmeric is a known catch all supplement.

    I would suggest you try getting Dong Quai - I don't think the other ingredients are that effective on arthritis. However, liquorice for instance, is also oestrongenic: I found the effects of the supplement I took amazing, eg I went for an interview in a high tech media company at 9 am (!!) and I got the job and I am age 68 - I was really on the ball. Also, I worked the most horrendously complicated legal document that normally would have taken me all day in two hours without a break and without a mistake. (I work at two jobs part-time).

    Therefore, I think there is a very powerful cognitive effect from these tablets - I just wish I could get them. I was in Hong Kong in January and enquired but as they were the same price as in the UK, I did not bother. However, the shop asked me where I had bought them and I said London - and they gave me the UK price. I suspect that if I had said a cheaper place, I would have got them cheaper. You live and learn. At £18/bottle of 60 (and I take 6/day), they are not cheap. You always get discounts for buying in multiples though - even so, at five for the price of four = at least £45/month. In addition, I used the patches on my shoulder - around £12 for five patches. I don't need them at the moment though.

    Good luck and if want any more info, I will happily supply it.

  • Thanks so much for the information. I am also 68 and have had RA since 32 when I was in the best condition in my life. I hate the big Pharms and am always looking for nutural alternatives. If you get a moment, check out LDN on Google. Lots of research on this option in London. Has been successful with many autoimmune diseases. Pretty amazing, relatively inexpensive with minimal side effects with most people.

  • What's LDN?

  • Low dose naltrexone. Key word is low dose.

  • Hi anything that would Im prove my energy and concentration would be a godsend as atm so can't function at work at all! Are you talking about licorice tablets/ patches etc to improve cognitive function? 😊

  • The tablets I took contained (only) Danshen, Dong Quai, Frankincense, Myrrh and Liquorice. My guess is that it was the Dong Quai that helped both relieve the pain and mentally. It is an anti inflammatory - some articles on the internet describe it as the prednisolone of the East. I found it made me much more alert and far more able to concentrate, eg I went for an interview very early one morning (and am not usually alert in the mornings) and I was really on the ball. Another time, I am a really complicated legal document to amend and it would normally have taken me all day. I did it in two hours without a break and no mistakes and was congratulated on making such a good job of it. I know I would not have done either of these things without the tablets. I have taken HRT but the Chinese tablets were far superior for their effect mentally.

    I can't get them in the UK any more because EU regulations mean that an importer has to apply for a licence costing £30,000 (per annum, I think). The shop now only stocks one brand of tablets which contain a long list of herbs that help numerous conditions. I have tried these - they are OK but do not have all the benefits of the ones I was using.

  • Thank you everyone for your kind, thoughtful, and supportive responses. I really do appreciate that you all took the time to answer. It does help to talk with folks who know from experience.

    I did in the end take my first tablet last night. It's an awful decision isn't it? Agonising pain and stiffness, or the possible misery of drug side effects?

    In the end I have to think of my mental health. Walking my dog is vital to my well being. (I am bipolar). I know longer take psych meds due to the horrendous side effects. I have changed my life style drastically to cope with the mood disorder. Walking, and being close to nature is what keeps me sane! When I was house bound due to the arthritis, my mental health deteriorated rapidly.

    So as many of you wisely point out, the disease itself is terrible. And, it may be trial and error, but hopefully I will get there in the end!

    I am grateful for the steroid shot I had the other day. Today my feet don't hurt, and I czn get up from a chair!!

    I do feel a bit nauseous this morning, and have a headache, but hopefully it will wear off.

    Wishing you all well.

    ❤️😀

  • That may be down to stress as LEF takes a while to going, it might well be nothing to do with it.

  • I am on sulfasalazine now I have been on methotrexate and Leflunomide. What was so bad with sulfasalazine, I have had body cramps and an itchy crawling feeling, but I have found this is better than the others which I had bruises coming on legs and arms all the time. I live on my own and it is frightening.

  • I got agonising pain (like being stabbed with hot knitting needles). Rapid pulse, thudding fast heart rate, tremor, and psychotic depression. Was hell. But some folks are fine with it. We are all biochemically unique.

  • Oh that sounds awful NettieC - are you taking any RA drugs now? And were those side effects apparent immediately you took the drug?

  • Hello. The depression hit me within a couple of weeks. The rest after six weeks. Awful!

  • Hi I felt the same taking MTX . I have been on 4- 6 and 8. I felt ill on 8, I will not take that amount again. I have been on 4 for last 6 wks. I take them near to tea time. I take 2 with half of my meal loads of water I wait 1 hr take other with rest of meal and lots of water I have felt better doing it this way, I think you know your own body. Hope it works , if I could find something natural U would take it now . Good luck.

    Sandie

  • Hi Nettie, reading all the varied comments you can see we all have this 'trial and error' thing to navigate. Salfasalazadine completely bought me out in the worst rash and I was told to stop immediately. That was after being on MTX to which I also had the worse reaction to! I too thought in my lowest moments it's too much and every drug is going to cause me grief. I tried the Plaquenil and it's been ok so far. Not to say that I'm not nervous, but we have to take something to try to alleviate at least some of the symptoms. Please stay in touch with your rheum my nurse and of course all of us here! All the best.

  • Thanks Cyprusmum.

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