Hi everyone. Hoping you can give me some advice. I've been doing really well with the sulphasalazine; normal BMs - how nice - I have been so hopeful - BUT, now I have developed a sore throat, and some feeling of tightness in my chest. I don't know if it's the drug or not. I stopped the drug and went to see my Dr- who said to stop the drug, and he took a throat swab- said to come back in 10 days. ??? I had recent blood tests ( about one week before the sore throat), and all was ok there except for a high level of B12 ( Dr said to stop supplementing B's , which I was doing).
I'm worried now. I've been reading that I should have regular blood tests while on sulphasalazine ( though my Dr had not told me this). Now I'm really afraid of the drugs! Is the possible side effects worth it? What is more harmful to me- the drug or the regular D?
What should my doctor be doing for me ?
Tex- anyone? What do you think?
Doctors are notorious for not always following up with the blood tests recommended by drug labels, but usually that doesn't cause any problems.
In the body, sulphasalazine is broken down in the liver, to yield 5-aminosalicylic acid, (5-ASA), and a by-product known as sulfapyridine. The 5-ASA drugs are very popular for treating IBDs, (because they avoid the risk associated with suylfapyradine), and brand names include, Asacol, Colazal, Pentasa, Lialda, etc. The sulfapyridine provides no medical benefits, and it can cause a side effect known as agranulocytosis, which is a condition involving a lowered white cell count. In particular, it often leads to a very low neutrophil count, and this, of course, compromises the immune system of the patient, leading to possible infections.
This could have been the cause of your sore throat. However, a complete blood test should have shown that your white cells were out of balance, (unless your doctor failed to order tests of your white cell levels).
The high level of B-12 concerns me more than anything, because high vitamin B-12 levels in the blood are uncommon. Excess vitamin B-12 is usually removed in the urine. It's very unlikely that the vitamin supplements that you were taking, caused that result. High B-12 levels are usually caused by either a liver problem, or a blood disease, (in which case your white cell count would be very high, or your red cell count would be high, or both).
If your blood test results were normal, then the indications are that the sulfapyridine derived from the sulphasalazine may have caused a problem with your liver. Hopefully, the problem will resolve, now that you have stopped taking the drug. Your doctor should stay on top of this, to make sure that it does.
I'm kind of surprised that your doctor would prescribe sulphasalazine, since it is seldom used these days, (mostly because of the side effect risk). Most doctors simply prescribe one of the 5-ASA drugs, instead, (of course, they are much more expensive).
Didn't your doctor check any of your liver enzymes? It might be a good idea to make sure that your liver is going to return to normal, (and your lymphocytes return to normal), before taking another drug, (such as one of the 5-ASA drugs). You definitely cannot afford to take a drug that is causing liver damage or blood issues. As bad as the D is, at least it is not as risky as liver or blood problems. Your doctor should be checking your liver enzymes, and your lymphocyte count, (and red cell count, hemoglobin, etc.), to make sure that none of them are out of line. After your lymphocytes and liver enzymes return to normal, then you can try one of the 5-ASA drugs, or Entocort, to treat your MC symptoms.
Tex
It is suspected that some of the hardest material known to science can be found in the skulls of GI specialists who insist that diet has nothing to do with the treatment of microscopic colitis.
Tex- Thankyou so much for the information! I have been so worried. The Vit B 12 levels surprised me. And I've been worried about that too. I've written down all of the info you gave me, and I'm making another appt to see the doctor; Sunday today,- hopefully I'll get in to see him this week. I believe my blood tests were normal ( red/white cell counts etc).
What are the 5ASA drugs that are normally used?
Tex- thankyou!
Mia
Since your blood test results were normal, there's probably nothing to worry about, it was likely just a minor reaction, and now that you've stopped using it, everything should be fine. If I recall correctly, you're located in Canada. In Canada, you should have these available:
Asacol 800
Mesasal
Mezavant
Novo-5 ASA
Salofalk
You may also be able to get these, but I'm not sure if they're available in Canada:
Apriso
Asacol
Lialda
Pentasa
Apriso and Lialda are newer products than the rest, I believe. They are both extended-release products, but Lialda
supplies a stronger dose of the active ingredient than the others. Your doctor should be able to advise you on which one of all of those is likely to be your best choice. Also, be aware that he is not likely to pay any attention to anything that I say, because I'm not a doctor.
You're very welcome,
Tex
It is suspected that some of the hardest material known to science can be found in the skulls of GI specialists who insist that diet has nothing to do with the treatment of microscopic colitis.
