ankylosing spondylitis cured with sulphasalazine?

majortom

Hi Can anybody help ?

I have recently been diagnosed with ankylosing spondylitis. Xrays show its early stages in my hip area.Naproxen helps this an i don't really feel it. Iv also had big flare ups and swelling in my left foot 2nd and 3rd toes. The joints have been swollen for about 4 months now. I have also had 2 big flare ups in my left knee. the first time i had the knee drained and it stayed down for about 2 weeks only then to swell up twice the size 2 weeks later. naproxen does not seem to do anything to help this swelling.

My reumatologist has suggested i start taking sulphasalazine. He also has said it will most likely have to be taken for life which im finding very hard to accept. I am starting to accept that i need to take something to help with my condition and after reading up about the drug and its side affects and other people taking sulphasalazine it seems like the side affects are more common than not and does not seem to garuntee helping with the swelling of joints.

is it just a case of experimenting with various drugs to see what suits ?

They all seem like powerful drugs and the thought of stopping and starting each one till i find the right one worries me.

Any feedback good and bad on sulphasalazine would be much apreciated

Thanks in advance

mike26

hi majortom
like you said it may work for you or not
but as you prob know we all trying for the
best drugs to suit us.
Sulfasalazine didnt work for me (taking it for 4weeks
and then had to stop, lowered white blood cell count)
take regular blood tests.
im now on methotrexate and lefiunomide but still very swollen up
(feet & ancles,knees,hands,wrists,fingers.
shoulders,lower back,neck&jaw.
maybe when i try the bios itll work, but the damards dont seem to be working for me. maybe need to give it more time we shall see.
hope it works out for you ..
mike :roll:

stickywicket

Hello majortom. It's a lot to get one's head round at first and I guess the 'meds for life' thing does sound daunting. (It's so long ago for me that I've forgotten.)

However, these auto-immune forms of arthritis are very powerful too - hence the meds. The latter look scary on paper but we are well monitored with regular blood tests while on them. I've been on two other DMARDS (methotrexate and hydroxychloroquine) for about 13 years and they do a good job for me. I've never been offered sulphasalazine but a friend has been on it for years and it works very well for her.

The thing you need to bear in mind is that those for whom the meds work well are not usually on the forum. They're out living their lives and enjoying them. We are not a particularly representative bunch of arthritics on here.

I hope you'll feel able to take the sulph. I just wish DMARDS had been on offer when I first got RA.

dreamdaisy

Hello, it's nice to meet you. I have been taking sulph since January 2002 - I was first classed as an 'inflammatory arthritic' and then that label was altered in late 2006 to psoriatic arthritis when my skin helpfully opbliged with a bout of the skin trouble. The sulph has not done a thing to ease the arthritis but it does help to keep my skin clear of the psoriasis. When I first began it I bruised mightily for some time but that settled and I don't have any side effects at all, apart from developing tinnitus which doesn't hurt and can be ignored.

I am still very carefully monitored - I am on triple therapy for the PsA and have finally dropped to bi-monthly bloods which is a treat. Yes, these are strong meds but what counts is the quality of life you can achieve now. My view (for what it's worth) is that delaying or not taking the drugs gives the disease the chance to truly get a hold: my arthritis did just that and I am now paying the price as I have OA in five major joints as well as PsA in those and thrity four others. My symptoms began in 1997 and it was five years before the first drug was given, the sulph. I've been taking nasty meds since childhood so don't think twice about taking more but if you are coming at this from a healthy background it must be far harder.

Just because side-effects are listed does not guarantee that they will materialise and you will be carefully monitored. Talk things over with your rheumatologist - he / she is the one who knows best and what really counts is life now, not life in ten years' time. I wish you well. DD

Boomer13

I agree DD. I would give sulphasalazine a try.

In my situation I thought I was lucky to have a kind GP watching my symptoms from the start. He kept telling me I would get better, just reduce stress, eat well, etc. We tried prednisone and waited. It didn't really help but he still wouldn't send me to a rheumatologist. He had me so afraid of DMARDS that I was sure I didn't want to try them. I waited so long to see a specialist that my illness now is unmanageable. You can't predict how this will affect you after a few years of suffering. For myself, I wish I had started DMARDS several years ago and felt better then, rather than now being on them and having them only prevent me from getting worse. I hope that makes sense. My biggest fear now is the disease and the damage it can do, not the drugs.

I know it's frightening and a lot to take in all at once. I know rheumatologists do not prescribe these things lightly because of side effects, so if it is being prescribed the doctor thinks it will benefit you.

Anna