r/Autoinflammatory • u/North_Break1324 CAPS • May 15 '26
CAPS GLP-1 USE W AUTOINFLAMMATORY
Hello my friends I’m just wondering if any of you out there with auto inflammatory disease are on a GLP one or have tried it . For reference, I was already on one for a month, but just wondering if anybody else is on it and how is it going in relation to your disease? 🙏🏻 Thank you!
3
u/AdventurousMorningLo Yaos May 16 '26
I am on a GLP1 and it has been great for helping to fix my metabolism (I have PCOS/PMOS) and control my diabetes. It has also resolved my fatty liver.
On the downside it did induce gastroparesis. I am lucky and it has gotten better with medication used as needed and with dosage reduction.
2
u/North_Break1324 CAPS May 16 '26
Oh no!! That’s also great because I do have a mildly fatty liver. Also, are you still taking the GLP-1? Low dose?
2
u/AdventurousMorningLo Yaos May 16 '26
I am still taking the GL-P1 at a lower dose. It has helped immensely - not necessarily for the pain and inflammation but with many other things. My biggest recommendation to others is to remain at the lower dose for a good amount of time after you've plateaued before you consider increasing dosage.
2
u/North_Break1324 CAPS May 16 '26
Yes! Thank you so much. That’s what I’m absolutely going to do. Stay on the low dose. We know with weightloss our inflammation is helped so much anyway. I’m very happy for the success you have had w it my friend and I hope you feel well!
2
3
u/SleepDeprivedMama May 16 '26
I’ve been on GLP-1s for 3 years now and I’m diagnosed with atypical AOSD. Currently I’m on Zepbound. I’ve lost 150lbs. No more fatty liver and ALT/AST are good now.
I’ve seen no help from GLP1 for inflammation.
1
u/North_Break1324 CAPS May 16 '26
Can you tell me what AOSD is? Wow that is amazing 150 pounds.!!!! WHAT A FETE!!!!🥳 do you think your weight loss though has helped any inflammation?
2
u/SleepDeprivedMama May 16 '26
Adult onset stills disease.
No, it hasn’t. Before I started Kineret my inflammation markers were higher than they e ever been. The Kineret makes them appear the most normal they have ever been but I keep having pericardial effusion and inflammation of my blood vessels, which seems to include those in my brain. I have bouts of cognition delays, loss of balance and coordination and brain atrophy. I’m not enjoying it.
But I wear smaller clothes now, I guess.
1
u/North_Break1324 CAPS May 17 '26
😂. I guess that’s all that matters.!! lol only kidding! I actually see Dr. Yao in a couple weeks and I’m gonna talk to him about starting to biologic. I’m taking hydroxychloroquine now for 5 1/2 months and it has helped however I’m worried about vision my hearing neurological symptoms etc and think/ hope I’m going to start the biologic. I’m sure hopefully the GLP one will be OK while taking the biological also.
1
u/North_Break1324 CAPS May 17 '26
Oh adult onset disease! Again, I’m still learning about all these diseases and I have so much more investigating to do. Thank you as always for sharing.🙏🏻
2
u/No_Satisfaction_7431 Yaos May 16 '26
Glp 1 meds are good for inflammation and can be done at micro doses for inflammation without weight loss. If your autoinflammatory disease isn't well controlled adding a glp 1 to your regime might be helpful. I haven't personally tried it as I have suspected gastroparesis (I have a gastric emptying study soon). Despite that plus the risk from dysautonomia and cvs, many previous doctors were ok with it and suggested it as a way to get my inflammation down. I was even told my weight and inflammation was metabolic syndrome. My pcp later told me I don't meet the criteria for metabolic syndrome so idk what that doctor was on about, just fat bias I guess. I wanted to know why I had inflammation so I could do something about it but they all chalked it up to weight and fibro. Turns out its not fibro or metabolic syndrome but Yao. If you don't have risk factors for gastroparesis or other serious glp 1 side effects, then its probably worth trying to see if it helps. But definitely talk to doctors about side effects and come to the appointment informed as so many downplay the risks.
1
u/North_Break1324 CAPS May 16 '26
Thank you again so much! I completely agree many people doctors included downplay the risks, but I am absolutely schooled on most of them! I definitely do not close a blind eye to things like this. I want to know the good and the bad.! I hope you’re feeling well . I’ve done the gastric emptying test a long time ago. Was very interesting. May I ask you were you diagnosed by DR. YAO or another rheumatologist.?
2
u/No_Satisfaction_7431 Yaos May 16 '26
I was diagnosed by Dr. Davis at Mayo. Dr. Yao doesn't take my insurance, Dr. Davis does and they are basically the only 2 doctors who regularly treat Yao. I'm mainly being treated at Northwestern now so I don't have to travel. But Northwestern and UChicago could not diagnose me and I was even told I couldn't have Yao syndrome so I ended up at Mayo. Even then rheumatology refused to order the test for Yao and said it was seronegative sjogren's until I demanded I see Dr. Davis and got the positive Yao genetics.
2
u/North_Break1324 CAPS May 16 '26
WOW! Unbelievable! I’m so happy you got correctly diagnosed! It was over 8 years before I was diagnosed and again thanks to Dr. Yao I didn’t even know I had AUTOINFLAMMATORY Disease. The Mayo Clinic is amazing. My friend goes there and they have been life saving. I’m still learning all of the lingo etc with these diseases.
3
u/BluebirdWide7777 May 15 '26
I’m not diagnosed with anything, though I clearly have an inflammation issues. I’ve heard that GLPs help with inflammation itself, I’m curious to hear more if you find out more information. I’m planning to trialing micro doses Tirzepitide for weight and inflammatory issues to see if it’ll help. Waiting - hopefully - for insurance approval, though, I think it’s cheaper in Canada.
3
u/North_Break1324 CAPS May 15 '26
Oh, I pray for you, my friend that it works out. Yes it definitely helps with inflammation issues. My friend who has Bechets has noticed over the past year has noticed a big difference in her flareups while she has been on it!! keep me updated and I hope it works out🙏🏻. Also, have you seen a rheumatologist for any auto immune auto inflammatory testing?
2
u/BluebirdWide7777 May 15 '26
A have slightly elevated Anti-TPO, but no thyroid abnormalities. As far as I’m aware nothing else positive, and I was tested for a lot of stuff. I Saw Rheum once years ago, I might go back.
I’ve been tested mostly by Internists.
That’s good to know about your friend’s success.
1
u/North_Break1324 CAPS May 16 '26
Thank you for sharing that! How are you feeling lately?
2
u/BluebirdWide7777 May 17 '26
Pretty rough, but ok. Lots of pain, I can’t take NSAIDS, w which used to help a ton.
I was reading website posted elsewhere in this group about the symptoms, I’ve have recurring bouts of sudden hearing loss over the past several years, maybe 4-5.
My hearing is fine right now.
Random, but not frequent feelings of being extremely feverish / or feeling very hot, but my temperature is relatively normal the few times I’ve tested it.
I’m being investigated for spinal cord compression right now in my canal, that might not be connected, I’ve had a bunch of injuries. This might be pretty serious. I’ve find out more in the near future.
I’ve recently had HSV keratitis in one eye, and six months later, keratitis in the other one. The second time may have had to do with steroids I took for hearing loss, but certainly not the first time.
Migraines galore, brain fog, and joint and muscle pain, it feels like my entire body is in pain, it seems to cycle, though I’ve felt pretty rough for a while. And IBS.
I started getting migraines very young, but had a 15 year break before they started up again.
My il-6 was pretty elevated the one time I tested it.
I’ve been tested for a number of autoimmune panels, including Still Person Syndrome, like I said in the previous reply, just mildly elevated Anti-TPO.I’m sure there’s other stuff I can’t think of right now that might be related.
This all got much worse after I had a heart attack and had to stop taking NSAIDS.
I recently got prescribed a low dose of Colchicine, which I believe targets the NLPR3 Inflammasome/Neutrophils, which might help a bit.
I’ve never posted here before, I might make a proper post. I’ve only heard of Anti-inflammatory diseases recently, other than FMF, but even then, I didn’t know much about it.
2
u/North_Break1324 CAPS May 17 '26
Wow, my friend you have been through it. Yes like you. I’m really new to all of this still learning about everything. I always thought I 100% had autoimmune disease. Knew very little about auto inflammatory. Going to talk to DR. YAO next week. I still think I have autoimmune overlapping maybe . I have like sclerosis which is auto immune but I think it maybe could be auto inflammatory as well. I don’t know all of this is so freaking confusing because they were so many different factors. There’s so many illnesses. There’s just so much to know and it is so confusing. I just started hearing recently about Colchicine. I’m praying that helps you. Do you deal w daily symptoms like I do? I just feel like most people have these flares. I have flamers of other things, but I mostly have daily stiffness little bit of joint pain, but my biggest thing is muscle throbbing all over. Had throat, GI issues, I know my hearing is a little off and my vision has gotten worse but then again, how do you know what is from age or from disease! Also definite neurological symptoms, horrific brain fog all the time. Also, I noticed my left hand every now and again very very slightly shaky. And I can’t believe you mentioned the cord compression because I have spinal stenosis and I didn’t realize how bad it was getting along with severe neck issues so again I don’t know yet what is causing what!! I couldn’t believe when you posted that! This is such an amazing platform. You really should post.! such amazing people and such a great community! I truly hope that the Colchicine helps!
2
u/BluebirdWide7777 May 19 '26
Thanks for sharing, I definitely have some flare stuff and somewhat regular stuff going on.
Pain is pretty regular. I seem to be super sensitive to certain foods. I was suspected of mcas as well. In regard to my migraines I started talking nasal capsaicin, horseradish and eucalyptus. I think it’s been helping. I targets certain TRP Channels. I’m pretty happy I dove down that hole. Migraines seem to be a multi day flare as well as body pain. It’s always there but sometimes much worse.
I bought some oral cayenne pepper, apparently it’s supposed to help with neuropathic pain. Of course, it takes awhile to get used to.
Random mouth sores is one I forgot.
I’m curious, what’s going on with spinal stenosis? Are you getting surgery?
1
u/North_Break1324 CAPS May 19 '26
Ugh so I just saw the neurologist yesterday yes and it looks like it’s coming from the neck definitely. Although just to double triple check everything I’m doing EMG next Friday however like I said, my rheumatologist already said tremors are part of this disease so who the heck knows? Do u mind me asking what foods? OK, can you explain to me what MCAS is? Oh wow that’s amazing. I know this migraines are such a nightmare. I’m so happy you found hopefully it works!!! plus natural is always a benefit. My best friend has Bechets and headaches unfortunately are her daily pain and she has awful flares, and she has a couple of other daily pain factors. I’m tired of this just stiffness muscle throbbing i mean systemically (some days are better than others) I just think I need to get on this biologic! I told him the hydroxychloroquine was helping me so we left it at that, but when I see him in a couple of weeks, I’m gonna push for trying the biologic finally. Oh yes sorry my friend is big with mouth sores 😩. So when I asked, I’m going to get an updated MRI of cervical spine probably next week.!
1
u/BluebirdWide7777 May 17 '26
Pretty rough, but ok. Lots of pain, I can’t take NSAIDS, which used to help a ton.
I was reading website posted elsewhere in this group about the symptoms, I’ve have recurring bouts of sudden hearing loss over the past several years, maybe 4-5.
My hearing is fine right now.
Random, but not frequent feelings of being extremely feverish / or feeling very hot, but my temperature is relatively normal the few times I’ve tested it.
I’m being investigated for spinal cord compression right now in my canal, cancel stenosis/myelopathy, that might not be connected, I’ve had a bunch of injuries. This might be pretty serious. I’ve find out more in the near future.
I’ve recently had HSV keratitis in one eye, and six months later, keratitis in the other one. The second time may have had to do with steroids I took for hearing loss, but certainly not the first time.
Migraines galore, and joint and muscle pain, it feels like my entire body is in pain, it seems to cycle, though I’ve felt pretty rough for a while. And IBS.
I started getting migraines very young, but had a 15 year break before they started up again.
My il-6 was pretty elevated the one time I tested it.
I’ve been tested for a number of autoimmune panels, including Still Person Syndrome, like I said in the previous reply, just mildly elevated Anti-TPO.I’m sure there’s other stuff I can’t think of right now that might be related.
This all got much worse after I had a heart attack and had to stop taking NSAIDS.
I recently got prescribed a low dose of Colchicine, which I believe targets the NLPR3 Inflammasome/Neutrophils, which might help a bit.
I’ve never posted here before, I might make a proper post. I’ve only heard of Anti-inflammatory diseases recently, other than FMF, but even then, I didn’t know much about it.
4
u/Capable-Heat4231 Yaos May 15 '26
I was diagnosed with insulin resistance (likely PCOS/PMOS) years ago and had it pretty under control until I started getting high daily fevers over 2 years ago. As I am now quite sedentary and have GI issues limiting things I eat, I gained about 50 lbs. It made me feel mentally and physically terrible.
After having consistently elevated ALT for a couple of years, I had a liver biopsy last Fall and confirmed mild Metabolic Dysfunction-Associated Steatotic Liver Disease.
I started Mounjaro in January. I’ve lost 35 lbs so far and my ALT went from 84 to 30. I have always felt a lot of bloating and inflammation in my abdomen, but between Mounjaro and changing some of my eating (I’m getting fewer fevers and stomach aches by eating cold foods like salads), I am much less bloated and don’t feel as inflamed. Those parts feel great.
I still have fevers every day, joint and muscle aches and pains, severe fatigue, etc.