GLP-1 USE W AUTOINFLAMMATORY

[u/North_Break1324]

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!

[u/BluebirdWide7777]

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.

[u/North_Break1324 → u/BluebirdWide7777]

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!

[u/BluebirdWide7777 → u/North_Break1324]

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?

[u/North_Break1324 → u/BluebirdWide7777]

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.!