Sulfasalazine advice??

[howell]

Hi all - My rheumy just added Sulfasalazine to my Celebrex every day. Said if it works, we'll stop the Celebrex. I've just gone up to one pill 2x a day. Working up to the 4 pills a day. Is a headache normal with this? What about feeling "foggy"? Am trying to drink lots of water. So far my stomach hasn't given me TOO much trouble with it. Anyone on it with advice? Thanks!

[ouchyk]

Hi Howell,

I was on sulfasalazine en for a very short time. I didn't get a headache but it did nauseate me terribly so I got off of it. I do see headache listed as a possible side effect.

http://www.rxlist.com/cgi/generic/sulfasal.htm

Maybe with time the headaches will subside. :confused: I know of another poster who uses sulfasalazine with great success and no side effects that she's mentioned. Maybe she will come along and post her experience.

Good luck with it, feel better.
Karen

[bozzly]

I was also on sulfasalazine for a short while. It made me feel awful. eg. very tired and headaches. I had to stop taking it in the end as it didn't agree with me.

[seedoubleyou]

I'm the poster Karen referred to -- I've been on SSZ for a year now. Initially took 2,000mg/day and did have some minor GI upset for a few weeks ("burning") but that did eventually subside. Other than that, I had no side effects; best of all, I experienced improvement in my PA symptoms fairly quickly.

About 6 months into SSZ therapy, rheumy increased my dosage to 3,000mg/day in hopes that I would experience even further improvement in my symptoms (and thankfully, it DID). At THAT dosage, I did gradually begin to experience one of the known side effects -- anorexia (loss of appetite). I more or less have to FORCE myself to eat!!

I will mention that at one point, I ran out of my enteric-coated tabs and the office phoned in a refill of the non-coated variety. The GI burning returned with a vengeance, much worse than it had been initially. I make it a point now to specifically request the enteric-coated -- it'll have "EN" on the label after the drug name.

For me, the drug has been a literal godsend. I've very minor skin involvement but have had constant joint pain and enthesitis; as well, inflammatory eye problems have been virtually non-stop for 20 years. Since beginning SSZ, I've not had conjunctivitis ONCE ... and my WBC count is normal after being consistently high for 6 years. The fact that it's cheap is just the cherry on top!!

FYI, I've been on Celebrex for 4 years now and still continue to take it.

I consider myself EXTREMELY fortunate to have responded so well to SSZ -- and I'm wishing you the same experience. :)

[howell]

Thank you all for answering!! Seedoubleyou, it sounds like you've had a great experience with it! How quickly did you begin to see improvement? I've just started the 1 in the am and 1 in the pm dose. I don't know that I'm seeing much improvement in swelling, but maybe *some* in the pain. I do feel a little foggy at times and maybe a little tired - but I chase a 3 year old all day so that is nothing new. I am taking the enteric-coated tablets and taking them on a full stomach with a full glass of water. My stomach only burns if it gets really empty. Scares me a little to know that I'm only at half the dose and it already burns some. My dr said that I can stop the Celerex if this works. Does your dr think that it works better long-term in combination? I certainly don't have a problem staying on it as I have been for years. Also, how much water do you try to drink in a day? Something I read said to drink LOTS to prevent kidney stones. Do ALL the side effects subside once the body adjusts?? I'm full of questions, but I get better answers from someone who is THERE than a doctor that has never been. Thank you so much!!

[CdnPA]

Hi Howell ... I have been on sulfasalazine for about three years now. I was nervous at first but the only side effect I had was mouth sores. I cut the dosage down and they went away. My rheumy was okay with the cut dosage but she has now increased me back up to six pills a day ... it's either than or enbrel and that REALLY scares me. So far so good and my bloodwork seems to be fine. I notice a definite improvement in my skin but mostly in the swelling and the pain. They both diminish quickly (when I remember to take all 6 pills/day). Good luck and hang in there for a while. They say that the side effects will disappear after a while.

[howell]

Thanks CdnPA- Enbrel scares me to death, too. My rheumy and dermatologist don't understand me - but that's beside the point. How do you divide your dosage daily?

[jdeldrid]

I'm also taking sulfasalazine. I started it about 5 months ago, and eventually worked up to 3000 mg/day. I also experienced anorexia -- I lost 30 pounds (which actually was a good thing, in my case). I'm now on Enbrel, and slowy ramping the sulfasalazine down. It helped a little with my PA, but not enough. The enbrel has been a godsend -- even my knee, which was always my worst joint, is close to normal, and my fingers are completely symptomless. The enteric coated variety made a huge difference with the nausea, which was awful. I also take Soriatane, but I'm slowly ramping that down as well, and hoping to get completely off it.

Enbrel didn't scare me at all -- MTX is the one drug I just refuse to try. I like my wine with dinner, dammit.

[seedoubleyou]

Hey again, Howell: Wow, there's quite a few of us on SSZ!! Will try to address your questions as well as I'm able.

I'm a nursing student (well, I was -- temporarily sidelined presently by a knee injury on New Year's Eve that required surgery 1+ week ago) and consequently, am exposed to all sorts of nasty pathogens during clinicals. This was a major factor when deciding on my treatment regimen -- Enbrel was the initial choice of both derm & rheumy but significant immunosuppression is an obvious concern in my case; ultimately it was felt that SSZ would be the better choice. If memory serves, I experienced some degree of relief from PA symptoms within about 4-6 weeks -- I vividly recall that first morning when I got out of bed and suddenly realized that I didn't feel like I'd been hit by a big truck while I slept!! (Was really amazing; I'm sure you can relate.) And, I gradually experienced improvement in my hip pain, which was one of my major complaints -- you know, sitting still for a bit and then getting up and having to do that "Frankenstein walk" for awhile before loosening up?? I could get up & go, without pain!! And, as I mentioned previously, it bordered on miraculous NOT to have conjunctivitis, which I'd typically have at least every-other-month (and that's a generous estimate).

I DID, however, still have neck/back pain/stiffness, as well as problems with my fingers; fatigue was still an issue, too. At about 7 months into SSZ therapy, rheumy's logic was -- "well, it's obviously working for you, just not well enough." He proposed increasing the daily dosage another 1,000mg (said that in Europe, patients typically go as high as 4,000mg/day with no problems so felt it was "safe"). I did so and fairly quickly saw improvement in neck/back & fatigue levels, but also at that time began to experience the loss of appetite.

The only real complaints I have at this point with SSZ is that the thumb & index finger on my right hand continue to give me problems, & I do have a tendency to bruise really easily and am covered w/petechiae (pinpoint hemorrhages). As I said, the drug has been a literal godsend for me, personally.

As for the stomach burning, it really didn't last too long -- I'd say a month, tops. I'm a milk drinker and I think that helped alot. Probably didn't hurt that I've pretty much always been one of those people w/a cast-iron stomach, too -- I've never been one that's easily nauseated or had an issue w/GERD.

In all honesty, I DON'T drink as much water as I probably should ... I was unaware of the risk of kidney stones (yikes!!) but have an appt. w/rheumy in a few days and will make it a point to inquire about that. I'm sure you've noticed (or will shortly, as you up your dosage) that SSZ discolors the urine; perhaps that wouldn't be quite so noticeable if I was better hydrated. (I'm guilty of way too much coffee, for sure!!) At any rate, my hepatic & renal panels thus far have been fine.

Re: the Celebrex, rheumy has never proposed my d/c'ing it. In my case, PA is complicated by joint hypermobility & OA, so ...

Again, I wish you like success w/SSZ -- anymore questions, let 'em rip!!

MTX is the one drug I just refuse to try. I like my wine with dinner, dammit.

AMEN!! :D

[CdnPA]

Thanks CdnPA- Enbrel scares me to death, too. My rheumy and dermatologist don't understand me - but that's beside the point. How do you divide your dosage daily?


I try to take three pills at a time but I'm notorious for forgetting to take them and when i remember I'll take whatever to get me through. I'm sure it's not a good thing to take them all at once but it's only now and then and better to take them than not to take them at all.

good luck.....

[howell]

Thank ya'll so much for answering my questions! Yes, Seedoubleyou, I am all to familiar with the Frankenstein walk! I do notice when I think about it that I'm not so stiff all the time, but my wrists and fingers are very painful in the mornings. Maybe it will work! One more question, if you don't mind... How often did you have bloodwork done early on? My rheumy said I don't need any at all done until my 3 month follow up appt. The more I read, the more I see that it should be done every few weeks early on. What do you think?? I've been on it only 3 weeks now, but may call and request it on Monday. Oh Seedouble, what did your rheumy say about drinking lots of water??