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Stopping Imuran due to hair loss

Is it crazy to stop Imuran due to extreme hair loss? I've been on it about 3 months, after having a resection in Feb, and my hair is falling out in huge clumps daily. I'll be bald soon at this rate. I don't have many options left medication wise, except Cimzia (developed antibodies to Remicade and Humira).

I've tried everything to stop the hair loss and nothing is working. I feel guilty for thinking of my hair over health.
 
I understand wanting to avoid hair loss from meds and it's certainly a hard call even when you can step back and be objective about the risks you face from Crohn's vs. the 'superficial' considerations of thinning hair or hair loss.

It sounds like you'd need to replace the Imuran with another med and it sounds like your options right now are Cimzia, Entyvio or methotrexate for the conventional meds. Or you could go a different route and try anti-MAP antibiotic therapy or partial enteral nutrition as maintenance therapy.

How well did you respond to Humira and Remicade? Did the surgery put you into remission?

At least with Imuran if you stop, you can still go back to it.
 
I understand wanting to avoid hair loss from meds and it's certainly a hard call even when you can step back and be objective about the risks you face from Crohn's vs. the 'superficial' considerations of thinning hair or hair loss.

It sounds like you'd need to replace the Imuran with another med and it sounds like your options right now are Cimzia, Entyvio or methotrexate for the conventional meds. Or you could go a different route and try anti-MAP antibiotic therapy or partial enteral nutrition as maintenance therapy.

How well did you respond to Humira and Remicade? Did the surgery put you into remission?

At least with Imuran if you stop, you can still go back to it.
I actually would love to try anti-MAP therapy, I just can't get my GI on board with it, so I'm not sure how to go about it at this point. I believe so much in the research being done about MAP. Anyone who is on anti-MAP, how did you get started?

Regarding Humira and Remicade I believe it was my previous GI's fault as to why I developed antibodies, she never started me on 6mp or Imuran first (studies show this helps "prime" your system and reduces the risk for antibodies). But I responded SO well on both medications, was out of pain, no diarrhea, etc.

I find out in August if I'm in remission, that's when I have a colonoscopy to see if there's any inflammation.

Entyvio scares me because of the risk of PML, but I'm not completely opposed to it if I'm out of options, of course.
 
Yes, that's not easy knowing that you responded well to meds but developed antibodies - and that your GI could have made a better decision to prevent it :( I know we can't expect them to be perfect but there have been studies...I feel your frustration. I've been there with doctors who didn't make great decisions over my treatment and we live with the consequences. Do you feel more confident in your new GI?

Are you having any bloods or fecal calprotectin before August to give you an idea about disease activity sooner?

I understand your concerns about Entyvio too - it does sound like we don't need to worry about PML with Entyvio but it's not easy not worrying! I find myself put off by the experiences I read about - the abdominal pain that people experience and also that it doesn't seem to have an amazing success rate. But I guess it's working in a different way and for some people that will be the right way! And also we use what we have available and since for a lot of people it's their last available med then it's a good thing.

Since you responded well to anti-TNF alpha meds previously, Cimzia sounds like a logical next step.

If you do start Cimzia and don't want to be on Imuran, then methotrexate might be a better option for you, for a short time at least. I believe that some studies show that the priming benefit that you talk about only requires six months of concurrent immunosuppressants at the start of biologic therapy.

There is a list of doctors in the US who prescribe anti-MAP antibiotic therapy...and a few people on the forum who have started. If none of them are near to you and if you can find a GI who will agree then one of those doctors might be prepared to advise on your treatment. You can see the doctors listed on crohnsmapvaccine.com here.
 
Yes, that's not easy knowing that you responded well to meds but developed antibodies - and that your GI could have made a better decision to prevent it :( I know we can't expect them to be perfect but there have been studies...I feel your frustration. I've been there with doctors who didn't make great decisions over my treatment and we live with the consequences. Do you feel more confident in your new GI?

Are you having any bloods or fecal calprotectin before August to give you an idea about disease activity sooner?

I understand your concerns about Entyvio too - it does sound like we don't need to worry about PML with Entyvio but it's not easy not worrying! I find myself put off by the experiences I read about - the abdominal pain that people experience and also that it doesn't seem to have an amazing success rate. But I guess it's working in a different way and for some people that will be the right way! And also we use what we have available and since for a lot of people it's their last available med then it's a good thing.

Since you responded well to anti-TNF alpha meds previously, Cimzia sounds like a logical next step.

If you do start Cimzia and don't want to be on Imuran, then methotrexate might be a better option for you, for a short time at least. I believe that some studies show that the priming benefit that you talk about only requires six months of concurrent immunosuppressants at the start of biologic therapy.

There is a list of doctors in the US who prescribe anti-MAP antibiotic therapy...and a few people on the forum who have started. If none of them are near to you and if you can find a GI who will agree then one of those doctors might be prepared to advise on your treatment. You can see the doctors listed on crohnsmapvaccine.com here.
Thank you so much for the link, I'll definitely be going this route if possible. I have a lot more confidence in my current GI, and I emailed him last night asking what my alternatives are. I just saw him last week and told him I don't want to stop Imuran, but I just can't take it anymore. Crohn's has taken SO much from me and my life, I refuse to let it take my damn hair.

Thank you also for the info on methotrexate, I would be open to trying it.. I hope the hair loss is only a side effect of Imuran/6mp and methotrexate won't do the same.
 
Wow, I just called Dr. Chamberlin in NM (from the list) and booked an appt for next month! I'm beyond excited. The other 2 doctors listed aren't currently accepting new patients.
 
That's so great! Do let us all know how the appointment goes and the treatment. I think there are so many people who are interested in this as a potential treatment but because there aren't that many doctors who will prescribe it there aren't as many experiences to read about.

That's really exciting! I hope it works for you!

There's someone else who just started AMAT here, another here (though they haven't posted much) and there's another thread here and here. I'm sure there are others :)
 
Thank you 24601! :) The initial office visit is $146 (not bad in my opinion, unless he takes your insurance of course, but I doubt he takes Kaiser), and after that I was told he manages out of state cases via phone/email. Also the first appointment he spends an hour and a half with you. I'm impressed so far! I plan to fly in/out the same day. I can't wait!!
 
Hi stelarjess,

I know exactly what you mean about this horrible disease taking so much of your life…that's exactly how I feel about my son. It just effects every part of your life:(

But the good news is…it appears that there are many people that are getting better with the Anti Map Therapy….so there is hope<3 I have personally talked with a mom who's daughter has Crohn's…nothing was working and they were looking at surgery. They started her on Anti Map a few years ago and she is doing great…in fact…I just checked back with her a few days ago and she said if you looked at her now…you would never know that she even has Crohn's…..so stay hopeful…and btw…her daughters hair all grew back:) Stay in touch and let us know how your visit goes with Dr C and how you are doing and I will do the same:)
 
Why did they prescribe the Imuran after the resection and before the 6 month scope?
Because my Crohn's is severe and I've tried every other medication out there. They wanted to start me on a maintenance med right away to avoid it getting back to where it was when I had to have surgery.
 

Lady Organic

Moderator
Staff member
have you stopped taking it yet? Are you at highest or lowest dosage?
I can tell you my experience with methotrexate. I had a lot of hair loss under that treatment, but it calmed down after a few months. I dont have the problem with 6-mp though. In the 6-mp/Imuran treatment support group thread I recently posted a possible way to stimulate hair growth with essential oils. check it out.
 
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