After some advice, flare or sulfa reaction??

suzygirl

Hi, I was after some advice from the people who have taken sulfasalazine. I have been on it for a month now, and am up to 4 tablets a day. Since taking it, I have had the worst joint pain, ever. My wrists, ankles and now hips are absolute agony. The pain killers just are not cutting it. I am so stiff and tired, fever, sweats and my hair is coming out in lumps. Mouth full of ulcers and blood blisters.

I called gp last week as I think that the sulfa has aggravated my symptoms and made me worse. The gp said it was a flare and that if it was the sulfa, I would have rashes.

Moving about is not an option at the moment as the pain is too intense, even sitting the pain is bad. I just can't get comfy. I have an appt with the rheumy nurse tomorrow, to check I am ok on sulfa. Not sure what she will say.

Just wondered whether anyone else had experienced this on sulfa or whether it is coincidence and really is a flare.

Thanks

dreamdaisy

I am not a doc and I don't know, but I have never had a flare that has led to ulcers and blood blisters - it's a good thing that you are seeing someone tomorrow as this does sound like a meds reaction to me (although I associate ulcers and blisters with meth, not sulph). I had severe bruising when I began sulph but that faded. I now have tinnitus (but I have been taking it for nine years now). Gut reaction? The drug does not suit you. I hope they can help you tomorrow. DD

suzygirl

Thanks Daisy, that is my gut reaction as well. I have had the ulcers and blood blisters before it is part of my disease, but it just seems as though the sulfa has irritated the disease making it more active.

I just wanted to see what others thought from another perspective.

barbara12

Hi suzygirl
Im sorry I cant help with your question, but you must be in awful pain, I do hope that it eases very soon.
Heres some hugs to keep you going ((((((()))))
Please let us know how you are going on.
Love
Barbara x

suzygirl

Thanks Barbara x

keith1971

Hi Suzygirl,

I'm definitely no expert but that sounds like a bad reaction to me.

I hope you get some answers tomorrow.

Be well.....

xx

tillytop

Hi Suzygirl - I'm with the others. Sounds as if you may be reacting to the drug. Daft as it sounds I have actually seen joint pain listed as a side effect of some of the meds used for arthritis so it may be that your awful joint pain is also part of a reaction. Not sure if this applies to sulph though.

Really glad you are seeing the rheumy nurse tomorrow. Will be thinking of you.

Love Tilly xxx

suzygirl

Thanks Lynn, Tilly and Keith. I feel less silly now saying to the rheumy nurse tomorrow, I am sure it is the med. The gp did say she wanted them to examine my mouth and throat as it is all inflamed.

I will let you know how I get on. Just hope they don't put up the steroids, it has taken me ages to reduce to 7.5mg.

need me bed

hiya,

I been on the sulf for about 4yrs now (6 a day)n and never experienced anything like this from the sulf other than the usual flare ups which no meds have stopped for me completely. but after about 6-7 months the sulf certainly started to work... as the other say it sounds like some kind of allergy reaction but again im no doctor and we are all different. Certainly worth checking it out tho hun

gentle hugs

NMB xxxx

martyn

Like the others on here - I'm not a doctors but

I was on sulfasalazine for 9 months - did absolutely nothing for me except clear up the dry skin on my elbows!

For me these are flare symptoms :-
My wrists, ankles and now hips are absolute agony.
The pain killers just are not cutting it.
I am so stiff and tired, fever,
sweats

Never had these but it seems like a reaction (I am guessing)
my hair is coming out in lumps.
Mouth full of ulcers and blood blisters.

If you don't get an answer you are happy with tomorrow - Don't go he/she is a nurse and must be right - Ask to speak to a rheumy or another doctor, they are there for you not the other way round.
We all like to suffer in silence cos we are noble about it and the only thing that gives you is suffering.

Good luck, I hope you get an answer

Martyn

suzygirl

Thanks everyone for your comments and support. It really means a lot. I will be interested to see what the nurse says!!

suzygirl

Well, I had my appt. Apparently I am having a bad flare according to my bloods. If I was having a reaction to sulfa, I would have a rash which I don't!! So, just have to carry on. Funny though my bloods don't usually match up to how I am feeling. Going back in 6 weeks.

dreamdaisy

I still don't understand the blood blisters etc. That does not tie in with any sort of flare that I know of or have experienced. Anyhoo, I hope you start feeling better soon, suzygirl and if not seek further advice. Bloods do not tell the whole story, methinks. DD

tillytop

Hello Suzgirl

Like DD, I've not come across mouth problems as part of a flare either, but glad they think you are not reacting to the supha. Hope they have suggested something for you to use for the sore mouth in the meantime?

I have often found that blood tests don't match how I am feeling so I know what you mean.

Thinking of you and really hoping things improve for you soon.

Love Tilly xxx

suzygirl

No, they didnt suggest anything for the mouth problems. The nurse did say it must be very uncomfortable.

I was in a rush though, didnt have the pennies today for the hospital car park so had to park in the road in an hour slot. Just amde it!!! Rdiculous, but I am at hosp every weeek with bloods and different asppts, costs me a fortune.

I have a consultant appt next week, dont know what to do. Since I saw the rheumy nurse today I am tempted to leave it?? Can't see the point in going again. Those of you who see anurse specialist do you also see the consultant??