Sulfasalazine

firestar

I started on sulfasalazine in August and have been struggling one and off with them the whole time. Been on 2mg since October but spend a lot of time feeling sick with occasional migraine style headache (sinuses feeling puffy). I have has some improvement of joints around hand and feet but really don't think I can keep taking it.
I am seeing my rheumatologist at the end of the month and the physio (who spoke to the consultant to arrange an earlier appointment) has said they want to review my medication as they think it is not working but I am scared to switch to something else. it might work better but might have worse side effects.
Just not feeling very brave about switching so wondered other peoples experiences of the trial and error phase of treatments and did you eventually get something that helps? Any tips?
:

dreamdaisy

Hello, I've been on sulph for over ten years. When I began taking it I was smothered in bruises, all from the waist down, but after six weeks or so they faded. I still bruise very easily though. I take six tablets per day (which totals 3000mg per day), three in the morning and three in the evening and always with or after food. Headaches are a common side effect, as is nausea, but I am lucky in that regard.

All meds come with a list of side-effects but that does not mean that they will turn up. It is a matter of trial and error until one finds the right med or combination of meds that helps matters. DD

mike26

hi firestar
pleased to meet you, sulfasalazine was my first (damard)
only on it for 4 weeks ,doctor told me to stop taking it(lowerd white blood cell count) .now on methtrexate and lefuionmide .
dont forget regular blood tests.
good luck mike26.

Kittkat

Hello there.Sorry to hear of your troubles on sulf. Never been on it. But just want to say don't be afraid to switch meds. I am on methotrexate and apart from some mouth ulcers I have been fine on it so far.

firestar

Nice to meet you all too. I am just starting out with the forum - actually really just starting out a bit with everything arthritis related.

Thanks for the reassurance. I am still surprised how overwhelming the whole things is and always hated taken medication but I guess I am going have to get used to that and maybe not read the side effects list first!! Seeing the Consultant later this month so fingers crossed. :-)

barbara12

Hello firestar..and welcome to the forum...sorry I cant offer much help, but I do wish you well with whatever you decide..x

Toots

Hi there Firestar x

I know it can be rough to start off with, it took me nearly 3 months of taking Sulf for the sore throat, nausea and headaches to completely die back, my doc recommended I persevere and try to get past these side affects and I have (now 4 months in). Talk to your rheumy, but if you can keep ploughing on things may well get better for you. Fingers crossed x

dippydoodah

unfortunately everyone reacts to medication differently. sorry to hear you're having problems with the sulfasalzine. i was on it for four weeks and as i increased to the four tablets a day, i came out in a horrible, ugly, raised rash. so red and hot and itchy, it was awful. my nurse told me to come off it immediately and i cant go back on it. ive also been on methotrexate but after a year, i had bad reactions to that too and after xrays, they told me it wasnt working anyway and that there were noticeable changes over the year so they stopped that too.

at the moment im just on hydroxychloroquine and paracetamols, plus naproxen and amitriptyline. im waiting for my doc to contact me regarding what they can do for me. unfortunately the rash has scarred and im covered in horrible reminders

if you have any doubts regarding your medication, please talk to your doctors. they are there to find whats best for you. im still trying to find mine, hope you find yours...

caroline x

firestar

Starting to look a bit like a member of The Simpsons!! Just had emergency liver test which was ok- thankfully! Anyone else turned yellow on sulfasalazine?
So fed up. I have been on it for 4 months and just feeling worse than I did in the summer so I think something is going to have to change.
Seeing the consultant tomorrow so will see what they say.
Such hard work.

stickywicket

I hope the consultant can come up with something better. I shall be thinking of you.

iamrayc

I have been taking sulfasalazine 1.5g bd for five months with no success so I can understand some of the frustrations. I think that the key thing is to communicate with your consultant. You are the patient and you know your own body!

stickywicket

Hello iamrayc and welcome to the forum. I hope you'll enjoy being with us. I don't do sulph. I take meth and hydroxy for my RA. I hope we'll see you around