GLP-1

[MOMITCHE]

Anyone using any of the GLP-1 agonists such as Zepbound, Wegovy, Moungaro, etc.
Saw one brief study in Japan which said there are some good results for MC.
Looking into it with my doctor.
Thanks

[tex]

Hello Momitche,

I'm not a user, but I thought I would welcome you to the group. This currently appears to be a promising area of research regarding IBD. It will be interesting to see how things develop.

Again, welcome to the group, and please feel free to ask anything.

Tex

[Sue777]

Well then.... let's bring this topic back to life! (Hi everyone, nice to see so many old familiar names still here!)

I never ever dreamed I would be tempted to take a med to help me lose weight as I am deathly afraid of medications and don't even take Ibuprofen or Tylenol unless someone makes me. But I have seen so many incredible results from others who have struggled with their weight and I get so jealous that I started reading and researching more about how and why this seems to work for some people. "Slows down motility of food through the system"???? That sounds like the fantasy of everyone with microscopic colitis! Constipation as a side effect? Yes, please, I have no idea what it's like to be constipated! Being able to eat salad, fruits and vegetables again to help bring on a BM??? OMG, sounds like a dream - I so miss salad and veggies.

It's also supposed to help keep blood glucose levels more stable? I have been a reactive hypoglycemic all of my adult life and would LOVE to not have such severe swings of my BG levels. And if I lost a few pounds and lost my urge to eat all the time? What a bonus that would be.

So anyway..... now I'm excited at the potential prospect of maybe trying this one day. I wrote to my nurse practioner (don't have a primary care doctor anymore) to get her thoughts on using semaglutide and she referred me to a nutritionist to discuss it. But all the nutritionists I spoke to said they can't prescribe it and tried to sell me their wellness package instead. So today I wrote a message to my GI doc, asking him what he knows, if anything, about the potential for GLP-1 / semaglutide to help with colitis. I hope to hear from him by Monday or Tuesday and if someone reminds me I will post here what he says.

Trying not to get excited about the potential of something that might help with colitis, but it's darn hard not to get excited!
Sue

[tex]

Hi Sue,

There is evidence to show that because GLP-1 drugs have demonstrated anti-inflammatory effects, they might be useful for treating IBD's. Of course actual proof in the form of clinical trials is not yet available. And since these drugs commonly cause gastrointestinal issues such as nausea, vomiting, diarrhea, constipation, and can occasionally cause pancreatitis, intestinal blockage, and gastroparesis, clinical trials are urgently needed in order to evaluate side effect risks for IBD patients. Of course, many MC patients normally have to deal with nausea, vomiting, diarrhea, constipation, pancreatitis, and gastroparesis, anyway, so that risk might be irrelevant.

There are studies showing indirect evidence of their beneficial effects for IBD patients in research studies such as the one at the following link, where the researchers interpreted their study results as:

In patients with IBD and type 2 diabetes, we observed a lower risk of adverse clinical events amongst patients treated with GLP-1 based therapies compared with treatment with other antidiabetics. These findings suggest that treatment with GLP-1 based therapies may improve the disease course of IBD.

https://pmc.ncbi.nlm.nih.gov/articles/PMC8343256/

There's certainly a possibility that GLP-1 drugs may be the future of medical IBD treatments, and based on the personal issues that you mentioned, you appear to be a candidate for an experiment, if you don't object to playing the part of a medical guinea pig. But we're all guinea pigs, anyway, since we're using diet (an officially unapproved method) to control our MC symptoms.

Tex

[Sue777]

Thanks, Tex, for the prompt and very useful reply. I think I am willing to give it a shot (literally) if I can find a doctor willing to do the trial with me and manage my dosage, symptoms, progress, etc. I'm hoping the GI doc is game but if not, I will reach out to my physician's assistant again to see if she will prescribe the lowest dose possible.

Normally those side effects would keep me from ever attempting this, but as you mentioned, some of us pretty much live with that every day anyway, right? And now that I am semi-retired and work from home, feeling lousy for a few days isn't the crisis it would have been a few years ago, ya know?

I'll keep you posted, and thanks for the link, I may share that with my GI doc.
Sue

[tex]

This should be a very interesting and educational project, if you're able to get a prescription. I'll keep my fingers crossed, and hope for the best.

Tex

[Sue777]

I still have tons of research to do on exactly what semaglutide is, what it's affects on other body parts may be, what drug interactions there may be, etc. I'm especially interested in whether or not it affects neurological funtioning at all - I do NOT want to put anything in my body that might bring my anxiety back or rev up my metabolism. Took me decades to get anxiety under control and I don't want any one or any thing messing with that!

The other issue is cost - gotta figure out a way to get it as cheaply as possible ("cheaply" being relative because it's so expensive) and make sure that I get a verified, validated product, not some knock off from a spa or med lab, ya know?
Sue

[Weepy1001]

many MC patients normally have to deal with nausea, vomiting, diarrhea, constipation, pancreatitis, and gastroparesis
I’ve had all these symptoms!!!! 2.5 plus years…..
Currently gluten free diet is the choice I have made!!!
Almost ceasing to thrive with little nutrition……

[kariswalstad]

I broke down and tried Tirzepatide and unfortunately it has sent my MC into an uncontrolled flare. Even cholestyramine has not managed to bring it back under control. I cut out all gluten, dairy, soy, oat, and egg white in 2019 which drastically improved my situation. I have not been this sick since then and I am right back to the same PTSD panic about needing a bathroom with no warning. I am going to refill the cholestyramine and possibly restart budesonide if that still doesn't help. It also made my POTS significantly worse. I hope others have better luck but I would absolutely not try it had the opportunity to choose again…

[magnusonboyle]

Hi Karis,
I'd like to know a little more about your experience with tirzepatide. Can you tell me if this was Zepbound or Mounjaro, or was it a compounded medication? What dose did you start with, and what dose caused problems with your MC? I'm trying to gather information on tirzepatide to talk with Lilly to move forward with a treatment trial. If you didn't take a Lilly product, that would be important information for me.
Thank you,
Sharyl

[tex]

Hello Karis,

Tirzepatide Is an interesting drug, in that it can help to suppress the inflammation that causes IBD in some cases, while in other cases, like other GLP-1 receptor agonists, It can:

* Alter gut motility and permeability
* Disrupt bile acid handling
* Trigger immune reactions

If I were in that situation, I would stop the tirzepatide (if you haven't already) and go back to the basic elimination diet I used to reach remission in the first place. Hopefully, that will soon resolve the flare. If it doesn't seem to be helping after a few weeks, you may have to ask your Dr. for a renewal of your prescription for budesonide, if you used that previously, and redo the treatment, starting with a full dose of 9 mg per day, and then tapering.
I hope this helps, but remember, this is just my opinion.

Tex

[Sue777]

Just popping back in to share my experience with a GLP-1. Unfortunately, I can't really say for certain if it is helping or making things worse (gotta love how confusing this disease can be!) I took it for 10 weeks and it seemed to really improve my colitis, so I foolishly weaned off the budesonide, probably too quickly. At the 10 week mark I went into a major colitis flare so went back on budesonide and stopped the GLP-1. After being off a month, I tried again. So now I've been back on compounded Semaglutide for 15 weeks, and I have been thrilled to have "normal" bowel movements and even a bit of constipation. But for the past few days, I've had to stay very close to my bathroom. I can't tell if it's a colitis flare or if I picked up a stomach bug. I am going to stay on the GLP-1 for another month or two at least because I don't think it's causing the flare-ups, but it's obviously not preventing flare ups, either.

Basically I don't know if it's affecting my gut motility at all but I am losing some weight so I'll take that. I have a GI doc appointment at the end of the week and will see what he thinks I should do next. I'm actually thinking about asking for a biologic because I hate steroids and they only make my osteoporosis worse. Hoping they have come up with something better since the last time I saw the doc.
Sue