Anyone with really bad reaction to medication?

dianel

Hi there,

I've been diagnosed with psoriatic arthritis. It's a long story but both my shoulders joints have been destroyed (before diagnosis) and now my right knee is going the same way. I take co-codomol and diclofenac which I can tolerate but not at the full dosage.

Unfortunately, I can have bad reactions to medication. I've reacted to prednisone, and also a terrible reaction to sulphasalazine which has really traumatised me and made me terrified of taking anything else. Although most of my life I've been lucky enough to have good health, when I have had to take medication I've reacted before.

My position is now that unless I control the arthritis with medication, they don't want to operate on my affected joints because they say I risk making the arthritis worse because of the trauma involved with the operations. I'm also in two minds about the operations not wanting to risk losing the mobility I have in my shoulders in spite of the pain. When I asked the surgeon could my shoulders get any worse he couldn't answer. Obviously I don't want any more damage, but is it inevitable without Dmards?

I know many of you take these medications with good effect, and I want to emphasise that I know I am in the minority in that I react - so I don't want to put anyone off. However, if there is anyone who can relate to what I'm saying and can tell me how they coped I should be grateful. Diane.

roczko

Hi Diane

The only really bad experience I had was with methotrexate. A terrible cough like whooping cough and broken ribs because of it.

In spite of that, I know that I have to try these drugs at least if I want to get this disease under control.

At the moment, leflunomide, sulfasalazine and prednisolone are doing that to a reasonable degree.

I hope you find something that works for you.

All the best.

Patrick

eugeneg

dianel wrote:

Hi there,

I've been diagnosed with psoriatic arthritis. It's a long story but both my shoulders joints have been destroyed (before diagnosis) and now my right knee is going the same way. I take co-codomol and diclofenac which I can tolerate but not at the full dosage.

Unfortunately, I can have bad reactions to medication. I've reacted to prednisone, and also a terrible reaction to sulphasalazine which has really traumatised me and made me terrified of taking anything else. Although most of my life I've been lucky enough to have good health, when I have had to take medication I've reacted before.

My position is now that unless I control the arthritis with medication, they don't want to operate on my affected joints because they say I risk making the arthritis worse because of the trauma involved with the operations. I'm also in two minds about the operations not wanting to risk losing the mobility I have in my shoulders in spite of the pain. When I asked the surgeon could my shoulders get any worse he couldn't answer. Obviously I don't want any more damage, but is it inevitable without Dmards?

I know many of you take these medications with good effect, and I want to emphasise that I know I am in the minority in that I react - so I don't want to put anyone off. However, if there is anyone who can relate to what I'm saying and can tell me how they coped I should be grateful. Diane.

Hi Diane,

I had a relatively healthy life up until 32 and the past 6-7 years have been anything but. I am still grateful for what I've got but probably didn't come across that way in my moan in my new post this morning! (rant over).

I first had a disagreement with MXT. It left me with terrible sickness and ended up affecting my blood count and Liver function. Then I went on to Sulpha. Put it this way, I went bright red during a meeting (not through embarrassment) head to toe, and my eyes went completely bloodshot. I looked like a dodgy extra from a Hammer Horror Movie!! I had to have a huge does of steroids to straighten that out then had major cold turkey when they took me off them too early. I have been on Embrel for 3 years now and unfortunately my Immune system has been battered. I've had 5 major infections this year, currently battling the final one, been on Anti-Bios for over 3 months. Also got to the stage where constant anti-inflams were damaging my stomach. I think's it! The Co-Dydramol have been the only constant and I eat them like smarties.
All through this time I have just kept going, I don't know what else to do.

I can more then relate to what you sre saying. I hope things improve for you I really do. Let me know how you get on.

Take care,

Eugene.

scattered

In answer to will you get worse without DMARDs, most probably yes. PA/RA, any inflammatory arthritis is eventually going to cause damage if left unmedicated. It sounds like yours is aggressive and will need treating aggressively.

I had a bad reaction to leflunomide which was very rare and had a bad reaction to MTX the first time I tried it. On it's own MTX also did nothing for my RA but I'm now back on it in a combination with adalimumab and hydroxychloroquine, being heavily monitored and I'm doing ok.

I have aggressive RA and it has taken me 2 years and many drugs to find the right combo. I have damage in my wrist and my knees. I know that without the combo of drugs I'm currently on I wouldn't be able to function. Discuss your concerns with your rheumatology team. There are lots of drugs out there and, for me at least, the side-effects of them are worth it for having my life back.

dianel

Many thanks for your replies.

I really feel for you Eugene, your experience sounds terrible.
I was expecting some sort of reaction Scattered because I've read so much on this forum - sickness, headaches etc. and I was prepared for that, but not to the extent I had it. I'm a migraine sufferer but I've never had a headache like it. I really don't want to put myself through that trama again. It took me two weeks to get over and affected my vision. It seems there are side effects, and side effects if you know what I mean. I'm sure you're right in what you say and that there must be a combination of drugs for everyone and I'm glad that you seem to have found yours.

I read on an American RA forum recently that they are doing some research in America into people's really bad reaction to medication actually giving it a syndrome name. It seems some people simply cannot tolerate medication. Whether this applies to me or not I don't know but I shall follow it with interest. I have another Rheumatology appointment at the end of this month so I'll have another discussion about it then. Again many thanks. Diane.