RED PLUM

Hi Red,

I have some questions for you if you don't mind.

I was put on Sulfasalazine in March 2000 and within 6 mos to a year (I need to check my medical history) I began to have edema which is a side effect of MCD.  I don't think they ever did any urine protein tests though I did go through many tests.  I believe it is a side effect of the 5ASA drugs I had been on until 9/6/07.  So I believe I have had MCD for 7 years.  I was the one who brought this up to my GI & my Nephrologist (I would have thought they would have figured this out).

1. How long after you were put on the azulfadine did it take to find the MCD? 

2. How did they find it, routine test?

3. Did you ever take any 5ASA drugs again?

My current GI who I planning on switching (he graduated in 2002 from a medical school in a third world country.....people come here for the good schools don't they) says we can't know for sure any possibly in the future I could go back on them to try (the 5ASA worked really well for me).

Please, please share, this is scary for me.

Thanks,

Beth

Hi Beth,

I am sure that this is scary for you. After all it is your kidneys we are talking about. I was quite scared as well. For me it took approximately 11 weeks to figure out that something was going on with me. I had severe elephant legs after 6 weeks of starting the Azulfidine. During my first checkup around 6 weeks after starting the drug I had gained 6 pounds. My GI back then thought that I was doing well, since my stools were actually almost perfect now and I had gained a few pounds. However, I have a smart brother who was doing his training to be a doctor. He noticed my legs and told me to stop the medication at around 11 weeks.

To answer your questions in order.

1. It took around 11 weeks to notice the side effects of edema.
2. From what I remember, they ran blood tests and urine tests. My urine showed protein, which the nephrologist said was from MCD. I am not sure if the blood test showed any abnormalities. This happened 20 years ago.
3. I tried Asacal and Colozal within the last 8 years..and I got pancreatitis from both. I cannot take any 5asas.

My current gastroenterologist thinks it was possibly the sulfa portion of the azulfidine that caused the MCD. But who knows for sure--it may have been the 5asa and sulfa together. Less than 1% of patients on 5asa's get this reaction..I guess we are in that small percentage. Even the Asacol helped my UC. My bowel movement were almost normal. But they are not an option.

My biopsies from the colonoscopies say that I have Inflammatory Bowel Disease with many small ulcerations in the entire colon, except the sigmoid and rectum. I most likely have Ulcerative colitis, according to my GI. Currently, I am on Budesonide enemas. I have been on them for the last 5 years. They help spare the sigmoid and rectum of inflammation, though the rest of the colon is diseased. The next line of medication is 6mp. I am very scared to try this due to my experiences with the 5 asa's.

I cannot believe that your reaction to the azulfidine had not been noticed by your doctor for so many years. I hope you get better. Is your UC flaring now that you off the azulfidine, or is the prednisone for your MCD also helping the UC? Let me know how you are doing and remember you are not alone...

Regards,

red plum

Hi Beth,

You are welcome to vent anytime. From what I remember it took around a month for the swelling to go down, however, it may take a little longer for you to recover. But after I was better, I remember getting a lot of swelling in my legs before my menstrual cycles for a few years. After fours years or so, the pms swelling had also disappeared. The pancreatitis went away after I stopped the Asacol and Colazal. No permanent damage was done. It took a few weeks for the enzymes to come back down to normal. I just remembered that I also got episcleritis with the pancreatitis, which was also from the Asacol. The white part of my eyes had turned red. I had to use a steriod eye drop to reverse that side effect as well.

You may want to ask your GI, or the new GI, if it is worth trying Asacol or Colozal. See if he thinks that the sulfa in the Azulfidine caused your MCD. Were you only on the Azulfidine all these years? Or did you take the Asacol or any other 5asa's along the way? Azulfidine has sulfa in it. I know that Asacol and Colozal do not. As for Pentasa and Dipentum, I am not sure.

Remicade seems to me to be an aggresive drug, and I would feel scared to try it as well. That is just how I feel, I guess because I don't do well on drugs. However a lot of people do well on 6mp..it may be worth a try. I need to think hard about it for myself as well. It is not a 5asa and may be okay.

But the fear is always there to try something new. I am also glad that I have found someone who has shared a somewhat similar experience. I hope for now the prednisone helps your UC symptoms, since you have to take it anyways for the MCD.

Keep in touch and let me know how you are doing.