Hi Everyone,
A little background on me:
I have microscopic colitis (Lymphocytic) & was diagnosed around 2 or 3 years ago. My last check up showed I was inflamed from my gut to the exit point. I also have perinicious anaemia, vitiligo, hashimotos, A.I gastritis. I came onto this forum when first diagnosed & was very inspired by those of you able to control symptoms using diet alone & often pop in and find lots of useful info. I am a mum of three young children (1,2 & 4) so although I eat healthily found the entire elimination very daunting at the time. My gastroenterologist at the time put me on Sulphasalazine & I experienced terrible side effects. Prior to being medicated I was running to the bathroom around 20 times a day.. on Sulphasalazine it was even worse and I could hardly move. That lasted 2 weeks after only one dose. I then went on Mezavant & about 2 months after found out I was pregnant. Goodness knows how my body was able to conceive given the state it was in, but it happened & I went off Mezavant and had a beautiful healthy girl. Then after I had Isabel, I had a terrible flair up. I managed to breastfeed for 6 months before going on Mezavant again. It worked well initially, however since before Xmas I have again had terrible flair ups. My new Gastroenterologist is testing me for Coeliac again (I have been tested about ten times) and also wants to put me on Imuran (Generic name: Azathioprine). I'm very reluctant to go down this path as he spelled out the potential side effects.
My first step is cut out dairy, gluten & soy + corn & see if that makes any difference before resorting to Imuran if needed.
If anyone else has taken Imuran, would love to hear how you have found it? Was it effective? Did you experience any side effects?
Many Thanks!
Is anyone on Imuran?
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Hi Charmelia,
Congratulations on the healthy birth of your daughter. Caring for a child is a full-time job. Caring for 3 kids is much tougher. Caring for a young family when you have MC can be unbelievably challenging.
Yes, we have several members who have taken or are taking Imuran. One member took it because he also has Crohn's disease, and I can think of at least one other member who takes it specifically because she is not able to completely control her MC symptoms without it. There are a couple of others using it, but they seldom post, so I don't remember who they might be. Hopefully someone using it will see your post and respond, but in case they don't, here are my thoughts on Imuran for MC.
IMO, if you are going to consider an immune system suppressant, Imuran is probably the best choice. Not only does it appear to be much more effective than the alternatives (including the Anti-TNF drugs), but so far no one has complained about any major side effects. If I understand their experiences with Imuran correctly, those taking it apparently still have to be generally careful with their diet, but when they slip up (such as at a restaurant or a party) the drug will usually either prevent symptoms or at least minimize them.
That said, as you are aware after considering the risk of the side effects that your doctor mentioned, immune system suppressants should be used with caution, and only if we feel that they are really needed.
I have a hunch that if you are able to successfully avoid the foods that you mentioned from your diet, you will discover that you don't actually need Imuran to control your symptoms. It may take a few months to reach remission, but you should begin to see some improvement within a month or so. Gluten is the worst, because those antibodies have a half-life of 120 days, so it can take a long time to stop reacting to gluten if we have a high antibody level. The longer we react to a food, the higher our antibody level climbs, for that particular food. Antibodies to the other foods have a half-life of only about 6 days, so those antibody levels decline much, much faster.
Good luck with the diet changes. And remember that even if you are a celiac, if your antibody level is not relatively high, those celiac blood test results will always be negative. It takes years of reacting to gluten before enough damage is done to the small intestine to receive a positive test result. IOW, the symptoms are often severe for several years before the celiac blood tests will turn positive. And if we remove gluten from our diet, then after a few weeks have passed, the test results will usually turn negative again, because they have a very low sensitivity level.
Stool tests are the only practical way to detect food sensitivities, because stool tests are much more sensitive (due to the fact that the antibodies are generated in the intestines, not in the blood). But unfortunately the only lab in the world that offers stool tests that actually work, is here in the States, in Dallas, Texas. It's possible to send a stool sample from AUS (they have a collection and mailing kit), but it's a long way from Aus to Dallas, TX, so the shipping charges are rather steep. The sample has to be frozen and shipped by overnight delivery.
I hope that some of this helps.
Tex
Congratulations on the healthy birth of your daughter. Caring for a child is a full-time job. Caring for 3 kids is much tougher. Caring for a young family when you have MC can be unbelievably challenging.
Yes, we have several members who have taken or are taking Imuran. One member took it because he also has Crohn's disease, and I can think of at least one other member who takes it specifically because she is not able to completely control her MC symptoms without it. There are a couple of others using it, but they seldom post, so I don't remember who they might be. Hopefully someone using it will see your post and respond, but in case they don't, here are my thoughts on Imuran for MC.
IMO, if you are going to consider an immune system suppressant, Imuran is probably the best choice. Not only does it appear to be much more effective than the alternatives (including the Anti-TNF drugs), but so far no one has complained about any major side effects. If I understand their experiences with Imuran correctly, those taking it apparently still have to be generally careful with their diet, but when they slip up (such as at a restaurant or a party) the drug will usually either prevent symptoms or at least minimize them.
That said, as you are aware after considering the risk of the side effects that your doctor mentioned, immune system suppressants should be used with caution, and only if we feel that they are really needed.
I have a hunch that if you are able to successfully avoid the foods that you mentioned from your diet, you will discover that you don't actually need Imuran to control your symptoms. It may take a few months to reach remission, but you should begin to see some improvement within a month or so. Gluten is the worst, because those antibodies have a half-life of 120 days, so it can take a long time to stop reacting to gluten if we have a high antibody level. The longer we react to a food, the higher our antibody level climbs, for that particular food. Antibodies to the other foods have a half-life of only about 6 days, so those antibody levels decline much, much faster.
Good luck with the diet changes. And remember that even if you are a celiac, if your antibody level is not relatively high, those celiac blood test results will always be negative. It takes years of reacting to gluten before enough damage is done to the small intestine to receive a positive test result. IOW, the symptoms are often severe for several years before the celiac blood tests will turn positive. And if we remove gluten from our diet, then after a few weeks have passed, the test results will usually turn negative again, because they have a very low sensitivity level.
Stool tests are the only practical way to detect food sensitivities, because stool tests are much more sensitive (due to the fact that the antibodies are generated in the intestines, not in the blood). But unfortunately the only lab in the world that offers stool tests that actually work, is here in the States, in Dallas, Texas. It's possible to send a stool sample from AUS (they have a collection and mailing kit), but it's a long way from Aus to Dallas, TX, so the shipping charges are rather steep. The sample has to be frozen and shipped by overnight delivery.
I hope that some of this helps.
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.
Hi Tex,
Thank you so much for your comprehensive response. The information you provided is very helpful. As I read it out to my husband, he was amazed & thankful also that you had taken the time to share this knowledge. Is such a personal issue that is not something I like to share with many people so is lovely to be able to come on here & know others are in the same boat & understand what works for them.
Now off for more blood tests! :)
Thanks again!
Thank you so much for your comprehensive response. The information you provided is very helpful. As I read it out to my husband, he was amazed & thankful also that you had taken the time to share this knowledge. Is such a personal issue that is not something I like to share with many people so is lovely to be able to come on here & know others are in the same boat & understand what works for them.
Now off for more blood tests! :)
Thanks again!
Hi Charmelia,
I am one who has been on Imuran for about two years. I do not have any side effects and my doctor orders blood work for me every three to four months. He watches me closely. First, I would suggest that you eliminate gluten, dairy, soy, and eggs to see how you do with that. I am so glad I went on Imuran because it gave me back my life. I put some lost weight back on, I have my energy back and doing all the things I did prior to MC. After a healing period of several months I was slowly able to eat some of my offending foods, in moderation of course. But, I DO NOT eat gluten at all. I am able to maintain on a low dose of 50 mg. Imuran is a drug that has been around for many, many years.
I know there is another woman who is on it. She sort of walked me through it and gave me lots of encouragement. I don't think she is on here any longer. If you do a search on here I think you will find some threads regarding Imuran that have been posted in the past.
Good luck with your decision.
Nancy
I am one who has been on Imuran for about two years. I do not have any side effects and my doctor orders blood work for me every three to four months. He watches me closely. First, I would suggest that you eliminate gluten, dairy, soy, and eggs to see how you do with that. I am so glad I went on Imuran because it gave me back my life. I put some lost weight back on, I have my energy back and doing all the things I did prior to MC. After a healing period of several months I was slowly able to eat some of my offending foods, in moderation of course. But, I DO NOT eat gluten at all. I am able to maintain on a low dose of 50 mg. Imuran is a drug that has been around for many, many years.
I know there is another woman who is on it. She sort of walked me through it and gave me lots of encouragement. I don't think she is on here any longer. If you do a search on here I think you will find some threads regarding Imuran that have been posted in the past.
Good luck with your decision.
Nancy
Imuran
Nancy,
My GI wants to put me on Imuran, and I'm very nervous now about Covid 19 and being immune-suppressed. Has it really worked for you? I have been on Budesonide since January 2020 and have seen no results. Please tell me your experience with Imuran.
Thank you.
My GI wants to put me on Imuran, and I'm very nervous now about Covid 19 and being immune-suppressed. Has it really worked for you? I have been on Budesonide since January 2020 and have seen no results. Please tell me your experience with Imuran.
Thank you.
Daba
Daba,
I'm not sure that Nancy checks the board regularly anymore, since she's in remission, but I'm sure that she would be happy to respond to a PM, if you sent her one.
Tex
I'm not sure that Nancy checks the board regularly anymore, since she's in remission, but I'm sure that she would be happy to respond to a PM, if you sent her one.
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.