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Beth75
Veteran Member


Date Joined Jul 2007
Total Posts : 2148
   Posted 9/27/2007 1:02 PM (GMT -7)   
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
Beth, 31
UC Diagnosed March 2000
Lialda 2.4mg 1xday since 8/24/07 (prev. Asacol 4800mg day),Calcium and Vit D 500mg 2xday.
Minimal Change Disease (Kidney Disorder) Diagnosed Sept 2007
Prednisone 60mg 1xday, Simvastatin 20 mg 1xday
Diovan 80mg 1xday. Fosomax 1xweek 70mg. MCD may be from hypersensitivty to 5ASA drugs.


Beth75
Veteran Member


Date Joined Jul 2007
Total Posts : 2148
   Posted 9/27/2007 1:03 PM (GMT -7)   
also what kind of drugs do you take now, what type of colitis do you have?
Beth, 31
UC Diagnosed March 2000
Lialda 2.4mg 1xday since 8/24/07 (prev. Asacol 4800mg day),Calcium and Vit D 500mg 2xday.
Minimal Change Disease (Kidney Disorder) Diagnosed Sept 2007
Prednisone 60mg 1xday, Simvastatin 20 mg 1xday
Diovan 80mg 1xday. Fosomax 1xweek 70mg. MCD may be from hypersensitivty to 5ASA drugs.


redplum
Regular Member


Date Joined Sep 2007
Total Posts : 49
   Posted 9/27/2007 2:21 PM (GMT -7)   
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

Beth75
Veteran Member


Date Joined Jul 2007
Total Posts : 2148
   Posted 9/28/2007 6:38 AM (GMT -7)   
Thanks Red Plum!!

I had gone to the Dr's. several times and the range of answers was it's your shoes (I wanted to throw them at the Dr. who said that) to possibly my uterus and they did check me for other things as well. However, I would bring it up every Dr. visit, primary, GI, OBGYN and no one made the connection that I had to make myself. My ankles and feet would and currently still swell up from the size of small oranges to grapefruits but would go down if I put my legs up and especially if I did cardio excercising that day then put my legs up. Maybe if I were more swollen the Dr's. would have been more interested in looking into why.

I am off all 5ASA drugs as of 9/6/07 and started a huge flare around 9/14 and was put on hydrocortisone enemas on 9/26 (don't know if those are helping yet) also, I started prednisone on 9/7 but it doesn't seem to be helping w/my colitis yet and my GI was surprised by that. I hope that I am not steriod resisitant either.

How long did it take for the swelling to go down when you started treatment? I know it will probably take me longer as I believe I have had this disease undiagnosed for 7 years.

Sorry that you had to go through all of that and that you got pancreatis too, is your pancreas ok now? Did the drugs damage it permanently?

For the sulfa drugs is that different than the Asacol? I wonder if it was originally the sulfasalazine that I was on that did that and maybe the Asacol would be ok for me? I would need to do futher research and I am going to find a new GI who has a lot more experience than the one I have now. You did not get MCD from being on the Asacol?

GI also suggested 6MP and even remicade for me, which seems to me drastic going from Asacol to remicade....(wont make that jump w/this GI) and yes with what has already happened to you, I completely understand the fear of taking a new drug. I haven't even taken a tylenol or an aspirin for headaches or cramps since two weeks before the MCD diagnosis.

I am so glad that I found someone else who has gone through this (not that you had to go through this!!!). Thank you very much for answering my questions!!
Beth, 31
UC Diagnosed March 2000
Hydrocortisone enemas 1xday
Lialda 2.4mg 1xday since 8/24/07 ;prev. Asacol 4800mg day,Calcium and Vit D 500mg 3xday.
Minimal Change Disease (Kidney Disorder) Diagnosed Sept 2007
Prednisone 60mg 1xday, Simvastatin 20mg 1xday, Diovan 80mg 1xday. Fosomax 70mg 1xweek. MCD may be from hypersensitivty to 5ASA drugs.


redplum
Regular Member


Date Joined Sep 2007
Total Posts : 49
   Posted 9/30/2007 9:12 PM (GMT -7)   
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.

Beth75
Veteran Member


Date Joined Jul 2007
Total Posts : 2148
   Posted 10/1/2007 6:08 AM (GMT -7)   
Thanks Red Plum! I was on sulfasalazine from March 2000 for about 5 years, then went to Asacol for two years then went to Lialda this past Aug (was only only on the lialda for about two weeks).

If I can go back to Asacol then I will watch out for the pancreatis and ask them if they can do tests or something annually for it. With how bad I am doing right now, I would even chance trying the Asacol just to see if I get MCD from it after I finish this course of pred and hopefully go into remission.

Thanks for your empathy and support!
Beth, 31
UC Diagnosed March 2000
Hydrocortisone enemas 1xday
Lialda 2.4mg 1xday since 8/24/07 ;prev. Asacol 4800mg day,Calcium and Vit D 500mg 3xday.
Minimal Change Disease (Kidney Disorder) Diagnosed Sept 2007
Prednisone 60mg 1xday, Simvastatin 20mg 1xday, Diovan 80mg 1xday. Fosomax 70mg 1xweek. MCD may be from hypersensitivty to 5ASA drugs.

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