Hi everyone,
I went to see my rheumatologist on Thursday, I aired my concerns about the side effect of the drugs that we have to take and she said that the side effects of the disease is far worse. She said the disease can cause heart attack, cancer. I just wondered what your opinion or experience on this subject is? As I always thought the drugs had this side effect?
Hi Kat ,
I must agree with the doc in this case , even though I have side effects from the drugs I take .These include, methetrexate , which in my case happens to be the worst one of all , and Humira a biological . I look back at the pain and discomfort I was in before taking these drugs and wince it was awful and the amount of inflammation in my body was extremely high and would have damaged my body beyond repair. I sincerely hope you find the right option for you and dont get too hung up on side effects that most drugs have . I suppose its a quesion of balance .
kindest regards
Danny
When you say side effects do you actually mean consequences? side effects of drugs is stuff like nausea - side effects of disease jsnt really side sffects it just what the disease can potentially do to us.
I am always concerned that I'm putting drugs into my system that may have long term consequences for my health. But I agree with your rheumatologist that this has to be weighed up against the long term health consequences of not taking them. Friends sometimes express concern that I'm on such powerful and potentiallly toxic drugs now in order to stay well. But the point is I am now very well and can only assume that its because my body needs these drugs in much the same way as it needs insulin or other naturally released chemicals in order to function properly. I take MTX by injection now and this has almost got rid of all the side effects. The way I see it is that none of us will live forever so better to live well as possible in the present and not worry unduly about what may or may not lie ahead. I exercise regularly, eat little and very well and take the drugs as advised by my medical team. That's all I can do really. Tilda
I too think that you are really meaning the consequences. If this disease is left uncontrolled it can cause the most awful things as it can attack all your organs such as heart and lungs as well as your eyes, as well as causing horrible deformity to your joints that is very disabling. And the constant inflammation does put enormous stress on your body, so you are much more likely to have heart attacks and strokes. If you look at some of the well known people who had the misfortune to get RA before the modern drugs then you can see how awful it can be. And many ended up addicted to other drugs just to control the pain, such as Edith Piaf who died in her 40's.
We are lucky enough not just to have drugs that do help, but also in being well monitored so that the side effects of the drugs are minimised. I hardly ever took so much as an aspirin before I was diagnosed, but am hugely thankful that these drugs exist. It's a hard choice, as they are toxic and not to be taken lightly, but I no longer fret over this as with the drugs I can live normally and nearly pain free. Polly
I do feel that the drug regime for inflammatory arthritis is heavy going. In itself, RA, PsA etc. are not life-threatening but the drugs that those of us with moderate to severe disease have to take are pretty strong stuff. This came as a bit of a shock to me at first (and for 'at first' read 'months & months'). I mean, many of us are on anti-tnfs which according to the definition I found are 'engineered human proteins made from genes'!!! Before I got this disease I sort of assumed that I wouldn't be contemplating having anything to do with 'engineered human proteins' unless I was at death's door.
But it's all changed now! I've been upping my dose of Methotrexate quickly over the last month and today I just took 25 mg. This drug which terrified me at first has not given me any problems whatsoever. (The rule of famous last words probably applies so watch out for the really miserable blog tomorrow).
I just hope that highly effective drugs that have less impact on the body overall are developed soon. Meanwhile, as the others have said already, the existing drugs seem a better option than the effects of this disease. And, as is often noted, online forums like this one can make problems such as side-effects seem much more common than they actually are because those who are doing really well on the drugs don't need to vent or seek advice so often.
Good luck,
Christina xx
I really don't want to frighten anyone on here, but uncontrolled RA (don't know about PsA) can be life threatening. I was talking to a lady that's got RA yesterday and her father died of problems caused by uncontrolled RA. This was in the days before anti tnf's. It is a systemic disease and can affect our internal organs, this in turn can cause serious problems. It is serious illness and we have to be treated with serious drugs, it is as simple as that.
I was once told by the NRAS helpline that no side effects from the drugs we take is as serious as uncontrolled RA. I have just qualified for anti tnf's have, been doing the rollercoaster of worrying about potential side effects of these drugs. Have had to come to the conclusion that I must stop worrying about what may happen from rare side effects of these drugs, but think what will happen if RA s left to run riot in my body.
Paula
I agree with you Paula that it's wrong to say RA isn't potentially life-threatening (I don't know about PsA but imagine the same applies?). One of the reasons I've been willing to take these aggressive drugs for my relatively early (but not mild I'm told) RA is because one of our neighbors died from the indirect and direct effects of RA several years ago. She was quite an elderly woman so I'm assuming that the RA did a lot of it's damage prior to the current drugs being available to her in the early stages of the disease. It went into her lungs and later on to her heart and she died from a mix of the two. She was very deformed by her RA and in severe pain for all of the time we lived next to her (about 12 years) so when I learned I had this disease I knew to take it very seriously indeed.
I like Tilda knew a lady who had RA in the late 70's, she was badly deformed from untreated RA, trying to bring up two children. I assume the drugs we are on were not available then.
When I found out I had RA she was the first person I thought about and although I too hardly ever took even a paracetamol for a headache, knew that if I did not want to be deformed by this horrible disease I would have to bite the bullet and take the drugs prescribed. Luckily I have had no nasty side effects from MTX or Hydroxychloroquine.
What is further down the line, none of us know but we have to live for today and deal with whatever comes our way later. I am just happy not to be in the pain I was before. My RA is fairly mild so I hate to think the pain a lot of people on this site are in.
Mary
In answer to PsA, yes you can die from it, but it's classed as secondary PsA, the same as when someone dies dies from secondary breast cancer. It's not the actual disease but the knock on effect. My school friend died before she reached her 50 birthday from secondary PsA. When I was diagnosed with PsA, I was very frightened as I knew this had happened to her. In consequence I am religious in all things that I am given to take and am looking after my body with due care. I have overcome my fears and take each day as it comes and try to live as before with the added meds.
Sorry if it sounded as if I was suggesting that RA etc. aren't potentially extremely serious. I have read a little about more serious consequences but possibly shied away from further investigation plus the sources of information I did find on the 'net were very brief, so I'm not very well informed about such things.
I suppose the point I should have made is that quite heavy duty drugs are often necessary for a better quality of daily life with this chronic disease, let alone to stave off the more serious consequences. So I'll be prepared to take anti-tnfs in a couple of months if I'm no better than I am now but that's not because I'm worried about dying but because I want to improve & preserve my mobility.
I haven't had inflammatory arthritis long so that colours my view of things, I suspect. But I do think it is important to discuss potentially serious side effects of drugs as well as the serious nature of RA etc. I know of one person who died after suffering from RA for about 20 years but, as I understand it, it wasn't known whether it was RA or prolonged steroid use or both that were responsible. Once upon a time steroids were wonder drugs and they did, and do, make thousands of peoples' lives more bearable to various degrees. I'm going to continue to take DMARDs and anything else I need but as time goes on I want to know more & more about the risks I'm taking, too.
Christina xx
Yes I agree - I think we take the drugs because we fear the consequences of what will happen if we don't in part - and if they work then the bliss of moving out of a world of pain and stiffness is tremendous of course too but it's the fear of deformity in old age that frightens me the most I think - not death. And to be honest I've never felt as well as I have done lately so I just can't get too steamed up about the long term effects yet.
However steroids are quite a different story - I've taken them orally and by IM and also used them on my skin for most of my life until recently and am SO glad to be off them entirely now. For me the difference is that I genuinely feel very well now on the mix injectable MTX and Hydroxy, whereas I never felt well on steroids - apart from once in hospital when I got blood poisoning from a kitten we had adopted but it's all relative of course. Otherwise steroids have always made me a bit bipolar and turned me into even more of an insomniac than I am normally so consequently I've never trusted them. I can't worry too much about drugs that allows me so much better a quality of life and keeps me feeling generally so well though. Maybe it would be different if there were more scare stories about these DMARDs in the press but as we are very closely monitored on them I think worrying too much is unnecessary.
It IS frightening, specially when you are new to RA to read about the potential side effects of the meds and it is always a balancing act I think between the disease and the meds. I have had RA for 17 years and I do now have non-joint complications - some of them (like Sjogrens Syndrome affecting my eyes) due directly to the disease itself and some (like osteoporosis) due in part to the disease, in part to the meds and in part to another unrelated health condition. My understanding is that RA puts us at a higher risk of things like heart disease and osteoporosis and some of the meds we take add to that risk. But unfortunately uncontrolled RA is, in itself a risk factor for poor health so it's hobson's choice really. Me - I'd take the meds every time because I take the view that I would do anything to be as well as I possibly can be now, rather than sacrifice that for a possible drug related side effect which may or may not happen many years into the future.
My "top tip" for coping with worries about new meds - and I do still worry, even after all these years - is to tell myself that I will give the new drug a try and, if it isn't right for me, I can always stop. That way I give myself a bit of a mental "let out" and it makes me feel more confident and gives me the illusion that I actually have some control over what I am taking.
I really do hope you find some meds which help you.
Tillyx
This is an interesting discussion.
I have had RA now for 15 yrs, and most of that time I was able to take Enbril with low dose steroids 2.5mg. This controlled me so well, I almost had a normal life. A few yrs ago, I got a life threatening kidney disease, (IGaN) that may have been triggered by the Enbril, (not proven at all, just a possibility). I have been on Chemo IV for 6 months and high Steroids to stop the kidney failure. It worked.
But I tell you, I still would not trade the almost 10 pain free years. It was worth it. I also know many people who were not able to be on these biologic drugs, and they had very bad deformity, with a very low quality of life. I am now in between meds, on steroids, getting tested for Ritoximab. I asked the Dr. last week, doesn't this drug have the side effect that it can kill you? And he said the same thing... "uncontrolled RA will kill you". It was a good reminder for me. I had almost forgotten this point.
So we all have to swallow the bullet and move on, taking these new strong drugs ... with the hope that one day they will find a better one that won't have as many side effects.
Thanks for the discussion point.
Umamel
I have only just joined this brilliant site and I was only diagnosed with RA twenty months ago, and so I am quite green compared to some of you. I agree that this is an interesting conversation and one which would have helped me a few months back when I was having arguements in my head about drugs verses disease. It's only natural that we should have concerns about the toxicity of the drugs we are swallowing or injecting into our bodies. I am on MTX 20mls and though they upset my tummy a bit, I know that if didn't take them my feet would be unbearably painful, as they were in the beginning. I have tried hydroxychloroquine, sulphazalazine and laflumanide but I had dreadful sickness and sore mouth etc with all three. It's seems to be a matter of finding what drugs do a good job for the individual with hopefully limited side effects, but at least there are the drugs available for us these days. So, we do at least have "choice":)x
Hi kittykat
If you look back at all my questions from when I was diagnosed nearly a year ago they are all to do with medication and side effects! Looking back on this last year I think it was my way of rebelling against the diagnosis probably more than the drugs. Having had to have an enforced three months without medication it renenforced to me that despite my concerns about the side effects my RA and I can't manage without them, so there is just no choice for me.
The drugs that people seem to fear most are the anti-tnfs, and actually all the research they are doing now seems to conclude that the risk of the severe effects of these is actually a whole lot lower than they first thought, with cancer in particular not actually being significantly more likely if you are on anti-tnfs or not. The reason for this change in view is that by now they have a lot more information about them because far more people have been on them for longer.
Also if you want to hear about another nasty complication of uncontrolled inflammation from things such as untreated RA, then its amyloidosis. The secondary form of (AA Amyloidosis) is only found in people who have inflammatory diseases over a long period of time and inadequate treatment. It used to reasonably commonly be found in people with RA (though still considered a rare disease), but with far more folk on DMARDs there are very very few folk with RA ending up with amyloidosis these days (though the rate hasn't dropped in other inflammatory disorders). Having gone through an amyloidosis scare myself, I'd now take anything going to knock inflammation properly.
Hi Kittykat
This is a term that healthcare professionals (HCPs) often use. As others have said, the disease dowsn't really have 'side effects' as such, but HCPs often use this phrase as a way of comparing the 2. Basically their concern is that people focus on the bad things that the drugs can do and don't always consider, or perhaps aren't aware of what the disease can do if it's not treated.
Unfortunately RA can affect internal organs, like the heart and lungs, and the drugs can help to prevent this from happening, so for most people they will do better on drugs than off of them, because the likelihood of having a serious reaction to the medications is outweighed by the likelihood of the RA causing damage without the drugs.
Hope that makes sense.
Victoria
(NRAS Helpline)
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