Re: sulfasalazine

[Guest guest]

Hi Ken --

Good luck with sulfasalazine! I took it for five years, and it helped a

lot. While I was on sulfasalazine I was able to work part-time; I only

became bedridden when I had to stop taking it because it caused gastritis.

Just wanted to give you one word of warning which is probably unnecessary,

but just in case: in very rare cases, sulfasalazine can cause a condition

for which I can't remember the medical term, but essentially what it means

is that it destroys your red blood cells. The incidence of this is, if I

recall correctly, less than one person in a thousand, but it's worth

checking for. A friend of mine was not tested for this problem when she

started taking it and, by the time the problem was finally discovered by a

hematologist, she was told that she had been on the verge of going into a

coma. It can literally kill you if you're one of those rare people who has

this reaction. Luckily for me, my doctor was very cautious and had my blood

count taken every two weeks when I started taking the drug. Sure enough, I

was that one in a thousand patients who had this reaction! So she tested me

at different dosage levels until we found the maximum amount I could take

without losing blood cells, which in my case was 1750 mg per day. The

standard dose is 4000 mg, so I was taking just under half the normal dose.

It took months of trying a new dose, coming up with a low blood count,

stopping the medication for several weeks to get it out of my system and

then starting again at a new dose in order to find the safe dosage level,

but it was definitely worth it. Sulfasalazine is the most effective

medication I've ever taken for my fibromyalgia. It was like a miracle. I

really believe that, if I had been able to take a full dose, I would have

been almost completely well. It took almost exactly four weeks to begin

working: every time I'd start it at a new dosage level, I'd wake up one day

four weeks later with no fever. Wonderful!

I did have some trouble with the sulfa -- made me feel sort of woozy -- and

my doctor switched me to a different form of the drug called Pentasa, which

does not contain sulfa. It was dreadfully expensive, but I contacted the

drug company and they arranged to send regular supplies to my doctor so that

I was able to take it for free.

I wish you the best of luck with sulfasalazine. We're all rooting for you!

Clement

cfsmail@...