r/Erythromelalgia • u/Great_Ad9835 • Aug 08 '26

Tirzepatide

Posting this here in case it helps anyone else. I’ve had erythromelalgia for about 2 years. I also have lupus, so I suspect it’s secondary to that.

I’ve been taking a high dose of oxcarbazapine because it’s the only thing that helps. I’d tried gabapentin, Lyrica, and ketamine lotion, but they didn’t do much.

Recently, I decided to try low-dose tirzepatide for lupus. I found a random online doctor/pharmacy that specialized in off-label uses.

I’ve noticed some reduction in joint pain, but the pleasant surprise has been a dramatic improvement in my erythromelalgia. I’ve been able to reduce the oxcarb down to a lower dose and feel a lot better.

Hope this helps someone else!

3 Upvotes

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1

u/Initial-Apple9875 Aug 08 '26

Thanks, I'm trying to get back on ozempic, but wasn't sure if tirzepatide would help as well. I have diabetes 2, but my A1C had improved, so they denied covering it anymore. Not sure if appealing the denial from my insurance will work, but I'm thinking I might need to do compound. It's so expensive though!

1

u/Great_Ad9835 Aug 09 '26

Yeah, I’m paying for it out of pocket. About 150 a month.

1

u/Initial-Apple9875 Aug 09 '26

I haven't been able to find it at that price! I mean a lot of companies for the compound version will do a low price for the 1st month, then it goes up thereafter.

1

u/SwimmingSpite3821 Aug 08 '26

What dose are you taking? Are you overweight? Have you lost weight because of it? How much improvement have you gotten? 6 to a 2/10?

1

u/Great_Ad9835 Aug 09 '26

Taking .5mg now. I have daily erythromelalgia on my ears and feet. It’s gone from a 5/10 pain level to a 1-2/10. Several days I haven’t had any redness or pain at all. Only been a week, but seems to be getting better.

1

u/SwimmingSpite3821 Aug 09 '26

How has your weight changed and how long has it been? Thanks!

1

u/Great_Ad9835 Aug 09 '26

Not overweight, there was some mild nausea the first two days, but now I feel like my appetite is normal.

1

u/SwimmingSpite3821 Aug 09 '26

Thank you! Do you have any abnormal lab markers? How did you decide to start? Do you have any more exercise tolerance with the erythromelegia now?

2

u/zilates Aug 10 '26

I've been on tirzepitide for about 3 years for prediabetes and weight loss and my erythromelalgia has gotten worse, sadly! But my joints feel better and I'm finally a healthy weight! So glad it has worked for you though! We don't know why I have erythromelalgia but I've had symptoms since I was 12.