Living with Rheumatoid Arthritis

I was diagnosed with RA in 1987 I was 36. I was treated with Penicilliamin then I was on gold injections until 2007 until I had a massive flare. During this time I still had quite a lot of problems with my hands and feet but could work full time and have a good quality of life.

In Jan 2008 I started on Enbrel. This to me was a wonder drug for the first few years then in 2010 I started getting chest infections continually. I have now been diagnosed with Bronchiexstasis and Vitreomacular Traction and still get chest infections six weekly (funny as I take a long term antibiotic to stop them.

At the beginning of this year I had to come off Embrel and I am just being treated with Hydroxychloraquin. I came off the Embrel because in January I didn't realise I had a chest infection and it turned to Sepsis, I collapsed at the top of my stairs and fell down them, breaking quite a lot of bones down my left side. I was quite poorly for some time and am now hoping to have an elbow replacement soon.

The reason I have harped on is that my Consultant keeps saying that all these extra illnesses are caused by the RA but I am convinced it is the biological drug that has caused all of this. Has anyone else had things happen like I have?

32 Replies

  • You sound as though you are having an awful time. I suspect that you have seen changes and advances in RA over the years from your gold injections to Enbrel. RA itself can cause illnesses but as you say so can Enbrel.

    I was getting a lot of infections on Abatacept so my rheumatologist swapped me to Rituximab and I have only had one chest infection due to cold .

    Maybe worth a further chat and discussion with the Rheumy team ? X

  • I am so sorry your suffering so much,i wish i could say something that would help you,but i am sending one of my big gentle hugs instead. Sorry its the best i can do.xxxxxx

  • Thank you Sylvie

  • Gosh you poor thing, how totally awful for you. I've no medical knowledge, except we all know how DMARD drugs lower our immune system and leave the door open for infections. It's so hard to get the balance right, a drug that helps RA but doesn't cause more harm everywhere else. In your place I might consider coming off everything for a bit just to see how I was then, but that's just me, and NOT advice to you! I just have a thing about what such strong toxic drugs do to us. But only your Rheumy team and GP can really say for sure. I do feel for you, hope you have lots of support at home. Lots of hugs xxx

  • Thanks Scotslass333, I am only on hydroxyl, Naprosen and paracetamol at the moment and although it hurts I am functioning ok but I just wish I could be painfree again.

  • Hi I started with RA in 83 on gold then different drugs but I have only had chest infections quite rarely even after starting on biological infusions in the late 90 I on Humira now I really hope you can get on an even track with Meds and sometimes I do wounder if the Dr's do know what there saying ? X X Dawn

  • Thank you DC56

  • Like you, I got regular chest infections onEnbrel,so I'm now on Rituximab infusions. So far,so good.

    I think that both the RA itself and the treatment can cause ongoing problems. It's just a question of which is the lesser of two evils. In my case, it's definitely the treatment; without it, I can barely move an inch. But I can't speak for anyone else.

    If your consultant insists that the symptoms are all the RA, then he has an opportunity to ameliorate them. If he blames the drugs, he may have nothing else to try. So, in a way, this could be seen as positive! J

  • Thank you Jora, it's me that blames the drugs but he says that as I have so many issues with my joints already being damaged then the drugs wont improve them. I still think I need to talk to him.

  • I totally agree. You need to talk to him, with your answers well prepared.

    Poor you. it is obviously a very tough time.


  • What a terrible time you have had.I haven't had anything as severe but I now have a different disease that I didn't have before the biologics I was on.still on prednisolone +sulfasalazine but have tried methotrexate (became breathless and effected liver functions) then have tried Humira,Enbrel and Rituximab. Now I was OK before last one then started tripping,memory probs(put it down to age) then tripping turned into jerking my tight side to left almost going over and jerks like unspoken torrets. This has got tons less but I always thought it was from last biologics. After many tests have now got Antiphospholipid Syndrome.(sticky blood).no indications before and don't have blood clots etc but am told I am unique as only had one case like me at my Hosp 30 years ago as I have RA+ Fibromyalgia with it.

    Thing is all these drugs have their risks and you are more so of getting cancers etc but if some thing does happen the doctors will deny drugs caused it and they all stick together no matter how wonderful they are.Thing is you will try anything to help you continue life.

    All biologics have been stopped for me not by me !

  • thank you xx

  • Hi I have been on RA for long time tried all medications then enbral did not do anything then tried humira, which was wonderful for about ten years. then I started to get colds and chest infection. even though when had cold I would not inject. I could not get rid of it even used antibiotics, after about two years up and down. They have put me on abatcept. What I wanted to say these drugs weaken your immune system if they weakens it too much then you start to get all sort. Fortunately there are several of the biologicals to try. As side effects, I suppose you have to strike a balance. If we do then we can have a bit of comfortable life. Take care

  • So sorry that things have been so difficult for you. Hopefully the future will be less painful, either the hydroxy will hold off the worst of the disease or they'll find another treatment that suits you better.

    As other have said, both RA and drugs can cause lung problems so who's to know what is at the root of the problems. It also doesn't help that we get older too.....and nothing to be done for that one either. My approach has been to try to live as cleanly as possible, and make sure I help my body along with good diet, exercise & sleep. Normal stuff like fish & veg, not expensive super foods. But the only extra I do buy is bacterial handgel for when I'm out and about, as I've got quite careful about having clean hands before eating.

    Hope all not too uncomfortable for you.

  • Thank you

  • Hi fossil321

    That all sounds horrible, hope things start to get better for you. Good luck with the elbow replacement.

    Yes I too also had problems with Enbrel. I'm 27 and was on it for 18 months and it worked wonders for my joints, I barely had any swelling at all and could run and work full time. But I gradually got more and more sick, I had almost constant nausea, stomach pains whenever I ate or drank, lost 3 stone, had zero energy and ended up having to spend a week in hospital on a drip.

    Eventually after many tests they diagnosed Ulcerative Colitis that they say was just exacerbated by the Enbrel but I am convinced it was caused by it. As I was getting more sick I would have breaks in the Enbrel when infections were suspected etc and every time I re-started it I got so much worse. I started to think maybe is was psychological and because I was worrying so much it would make me sick, that was causing it to. The consultants (both Rheumy and Gastro) still aren't willing to link the Enbrel and the UC and even say it could just be a coincidence but since I stopped Enbrel in August I've barely had any stomach or nausea issues. It does make me worry about all the unknown side effects!

  • Hi fossil,

    I was diagnosed the same year and at the same age. Different drugs though. First had NSAIDs, then Sulpha was added. After 13 years of pretty good control, due to suspected internal bleeding all drugs were stopped and I was put on Prednisolone for 6 months, with morphine. Eventually started on Methotrexate tablets then injections, along with Leflunomide. I too developed Bronchiectasis along with one of its pets, pseudomonas. Currently having a break from MTX due to liver enzyme problems and chest seems more settled. I too think that some drugs (not just biologics) can cause added problems, although nobody will admit to this.

  • Hi poemsgalore1, I also have pseudomonas with my Bronchiecstasis. When I first got pseudomonas I was told by my GP that I would need to be admitted to have an drip to treat it, I have never had this treatment so I think the pseudomonas is still hanging around. Unfortunately as I also have Sjogrens syndrome (caused by RA) I don't produce many sputum samples to test ! I think, as I said earlier I need to talk to someone.

  • We could be twins!! I've had the IV antibiotics 3 times up to now. I've actually been trained how to do it myself so I can go home after a few days. The drugs are delivered to my house along with a table top 'fridge to keep them in, and I finish the course at home. The last time I had this treatment was in April/May this year, but I was far too ill (and also on Oxygen) to go home, so stayed in the hospital for the full 14 days. The Sjogren's does add more complications to the issue. I also have Vasculitis.

  • Wow, I haven't had Vasculitis yet !! perhaps I shouldn't have put that ha ha. I think I will talk to my GP about drugs and pseudomonas. Thank you so much for your reply.

  • Wow! I'm so sorry for all that you have been through!! I've been dx'd for about a year and a half now, and sometimes when I'm feeling very sorry for myself I have to stop and remember that there are SOOO many others on this site that are SOOO much worse off than myself. I don't have any experience with what you are going through, but I can offer gentle hugs to you and hope that you soon find a solution to all your health problems.

  • Thank you so very much x

  • Sorry to hear you have been so ill. I can't imagine what you have been through. Oh my gosh the decisions we have to make. I have just started Embrel only 3 weeks ago so was interested in your post. I just can't function at moment so don't feel I have much choice. Best of luck to you xxx

  • Hi lainee 😃 enbrel was my first biologic..worked brilliantly for years..xx

  • I was on embrel for a no of years and it was great for me too but after a time it wasn't doing anything for me anymore,I suppose my body got too used to it,I never had any problems while I was on it though,I even got a sun tan in the summer which as a rule I could never seem to get I'm on humira and I'm alright with that too I've been on this now for over a year......I hope you get some pain relief soon...

  • I'm the same I'm 48 AND I'm always feeling down chest infection colds flu illness , catch a lot of my kids I feel like stopping methatexate to see if I pick up ? Hope you get better I was on gold and penicillin that made me sick .

  • I can relate to what you are saying. I've not had RA for anywhere near as long as you have and mine isn't aggressive - just slippery - but I've only had it for five years.

    However I've failed to tolerate four DMARDs and am on nothing now having recently tapered off Prednisolone. Only when I described my reactions to Sulfa and Hydroxy to a hospital doctor was I told this was anaphylaxis. Now it's on my notes but only by default.

    I also took MTX for two years until sickness and the runs got too bad. Most recently I tried Azathioprine which hospitalised me twice but no one would acknowledge this as pancreatitis so I was put back on it twice and treated with powerful IV antibiotics for what the surgeon described as UTI sepsis.

    I never blame my doctors for putting me on these drugs but I would like my notes to reflect my reactions accurately. I get so furious with my body for refusing to tolerate drugs but in fact I think I should respect it more for objecting to the toxicity.

    I'm not really sure if I even have RA anymore but if I do it's not going for my joints - however my peripheral nervous system and kidneys aren't too happy just now and nor is my cardiovascular system. Earlier this year I had pneumonia and then this UTI sepsis/ pancreatitis and then a severe post opetative wound infection followed by several stroke like happenings. Lots of antibiotics down the hatch - two courses by IV.

    How much of this relates to connective tissue/ autoimmune problems or medications or else s just down to sheer bad luck/ unfortunate coincidence? I just don't know but instinctively I feel a lot of it is down to the effects of medications because I'm so hyper sensitive. I think my doctors must feel this way too about me because so far they won't let me try any more. This in itself feels like an admission that my instincts are correct. However on my notes my reaction to Aza is described as a mild allergy!

    So for me the question is whether my present symptoms require more immunsuppressant drugs? Not sure. Will I take them if my new rheumy advises me too? Yes probably. Is this prospect as terrifying as the idea of joint erosion? Yes far more so for me because anaphylaxis and pancreatitis can both kill.

    Is it also more terrifying than the possibility of organ failure due to a deviant immune system? Probably not. Sorry - not very helpful as I'm asking more questions than I can answer. I guess all I can reliably offer is my sympathy.

  • Wow Twitchytoes, you are going through the mill, it is a really difficult thing isn't it, trying to decide whether things are doing you good or whether they will cause other problems. I hope you settle with something that suits you soon. Take care

  • Thanks - yes have absolutely been through the mill this year but things are now much better and I'm only on a BP med and thyroxine presently. I do still have some really unpleasant symptoms that no one seems to be able to identify so not clear whether it's part of my confirmed connective tissue autoimmunity or the lasting legacy of drugs tried and failed. Of course I think it's part of the former over the anxiety they keep blaming - but proving that it's part of my RA/ AI disease or drug related is very hard and anyway for conditions such as Sjogrens there's no treatment apart from the four I've tried and had awful reactions to.

    I don't know what I'd do if I had aggressive RA because of my drug intollerences so am thankful that I seem to have a mild version of RA at least.

    I think you should trust your instincts and if you feel your problems have been caused by drugs such as enbrel then you are probably right. X

  • I would say that you will know your own body. Trust your instincts.

  • I hope you all are coping with the multiple problems you are suffering with. Please don't follow my example because as well as those listed above, I've also have cancer and have recently been diagnosed with Osteoporosis. I spent Christmas Eve in hospital in agony (until they gave me morphine). Home now, but still in a lot of pain I feel so miserable. :-(

  • Sending you gentle hugs xxxx

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