Back again with worse sulphasalazine side effects

[mia]

Well. Here I am again guys. I've had regular tests on liver, kidneys , blood- all ok- incl B12 levels ok now. I went off the sulphasalazine, for 2 weeks or so, but then the doctor convinced me that I should give it another try, and agreed to redo all of the monitoring tests every 2 1/2 weeks to ease my mind. SO, back on- all ok until about 3 weeks in I got a severe abdominal pain. I didn't realize it was the drugs, but only realized a few days later when I looked it up online. There's a lot of scary stuff out there I've found for both sulphasalazine and the Asacol. Anyway- I'm now off the drug again; it's been a week but the abdominal discomfort, gas, nausea, bloating, and dizziness continue (though somewhat lessened). I saw the Dr again, who didn't seem overly concerned ( because my tests from 4 days previous had all come back normal), but suggested I try the the Asacol instead. (NOPE).

My concern is this: how long before these side effects are gone? I worry that this drug has done some permanent damage (hopefully not a legitimate worry). I found a board online for rating drugs with comments, and my experience and symptoms were frequently mentioned for sulphasalazine (and a lot worse side effects too). The Asacol ones were just as bad from people who had bad experiences. The only indication of duration was a comment from someone who was in week two of being off Asacol, but still experiencing side effects.

I'm so NOT going to try drugs again. I just hope I get over this.
What do you think? Should I be doing something, or do you think I just need to wait it out? I guess I'm looking for assurance and advice. Tex? Somebody?

[tex]

Hi Mia,

Sorry to hear about these problems. Do you have arthritis? Otherwise, I don't understand why your doctor prescribed sulfasalazine, instead of mesalamine. Unless you have arthritis, you certainly don't need the sulfapyridine that your body metabolizes from sulfrasalazine, in the process of metabolizing mesalamine, (mesalamine is the active ingredient that you need to control the inflammation of MC.) It is much safer to take the mesalamine directly, so that you don't have to deal with the sulfapyridine. He probably prescribed it because it is significantly cheaper, (if my memory is correct), however, it's usually false economy to take drugs with higher side effect risks, simply because of the price.

Be that as it may, surely the symptoms will fade away after a few more days. The most serious risk with the sulfasalazine/mesalamine class of drugs is pancreatitis, (inflamed pancreas), but that is normally only a risk with long-term treatment, and even then, discontinuing the drug will usually resolve the problem. That problem is so rare that most GI docs are probably not even aware that it is associated with the use of the 5-ASA drugs, (drugs based on mesalamine).

If your liver enzymes looked OK in your recent blood test results, then you shouldn't have any permanent problems from the use of the sulfasalazine. You probably just need to give your body a few more days to get the residues of the treatment out of your system.

Please keep us updated.

Tex

[mia]

Oh Tex- thankyou for replying. I've been worried about this. It's reassuring to hear that you think the symptoms will probably pass in a few more days. I thought of my pancreas because I have a burning sensation in my abdomen- but that's sort of all over mid and upper abdomen. I don't have vomiting or fever.

No I don't have arthritis. This is the drug the doctor prescribed- he didn't suggest any other ( not that I'd even try others after this experience). I ended up feeling far worse on this drug then I ever felt with my CC. I feel like I don't trust the doctors at all anymore.

I have a doctor's appt on Wed. I believe I'm going to tell him no GI specialist now- I'm certain all that one would do is just want to give me more drugs.

When I'm over this- I might consider the pepto bismol thing ( I think that's as far as I'd go 'drug wise' now). Is there any big risks to that? Has anyone here tried that with any success?

I'm so glad I can come here to discuss this- I get worried and then need some of your calm rational thinking to help me sort things out. Thankyou Tex.

[tex]

No fever is definitely a good sign, and of course, so is not having any vomiting. Don't forget that some of your symptoms may be due to CC, also.

Doctors are trained in medical school to treat patients by prescribing drugs, so they really don't know what else to do. The only exception is celiac disease, and they still consider that to be a somewhat rare disease, so they usually don't think of dietary treatments for any other issues.

If you're going to try to control your CC by diet, then you don't need a GI specialist, anyway, since most of them don't believe that diet changes are helpful for treating CC. Yes, some members have had success with the Pepto treatment, and a few members have had adverse reactions, so they had to stop taking it. If you want to try the Pepto-Bismol treatment, you don't need a prescription of course, since it's available over-the-counter. The recommended treatment is 8 tablets per day, for 8 weeks. The Pepto treatment brings remission in 90% of cases, but many people relapse a week or so after the treatment is ended, unless they are following the gluten-free diet, and avoiding any other food intolerances that they might have. A few people are allergic to Pepto-Bismol, of course, and that is the main reason why Dr. Fine, (who originally developed that treatment), no longer recommends it. Still, according to trial results, the Pepto treatment is probably the most effective treatment available for treating MC. Most prescription drugs have only about a 60 to 75 % success rate.

If you are allergic to Pepto-Bismol, you will realize it within a day or so, usually, because it may cause dizziness, balance problems, blurred vision, nausea, etc. Otherwise, unless you take it for longer than 8 weeks, at the recommended dosage rate, there shouldn't be any risks involved. Taking it longer than 8 weeks can lead to problems, since bismuth subsalicylate is a heavy metal, and it can build up in the body, if too much is taken.

Good luck with this, and keep us posted.

You're very welcome, of course,
Tex

[mia]

Thankyou Tex!