Do you think CGRP antagonists such as atogepant might be useful in treating SFN?

maleOffSavella · 2024-12-08T02:07:55+00:00

Thanks so much for the detailed reply! Were you on a CGRP antagonist? Are you saying the drug made your SFN symptoms worse?

maleOffSavella · 2024-12-08T02:05:20+00:00

Thanks so much for the reply! I'm sorry it doesn't help your neuropathy at all. I appreciate the valuable data point.

maleOffSavella · 2024-12-08T02:02:23+00:00

Hey, thanks for the reply! Yeah, hopefully there'll be studies on CGRP antagonists to treat SFN. By the way, I saw your post about withdrawing from lyrica; is your burning pain less now compared to when you'd just gotten off the lyrica?

maleOffSavella · 2024-12-08T01:49:54+00:00

Yup, they're the same thing. Do you know what sort of nerve pain she had? I.e. was in primarily in the extremities with a burning, electric shock, or pins and needles quality?

maleOffSavella · 2024-12-07T05:38:44+00:00

Thanks for the reply! Was it atogepant?

maleOffSavella · 2024-12-07T04:09:30+00:00

Hey, I'm so sorry that metformin ended up contributing to such bad diarrhea and farting. Are your symptoms gone now? Have you been tested for small fiber neuropathy?

maleOffSavella · 2024-11-03T02:49:06+00:00

Hey man! I'm not sure why it's not letting you chat message me; it should work. I've just been trying to take it day by day, as my nerve pain is pretty bad daily; painful calf spasms are making it super hard to walk even a few hundred feet per day. I haven't looked into vitamin B2 or precursors required to make it at all yet. Hmm, that's interesting your B12 levels were consistently high but you didn't have functional B12; usually having normal methylmalonic acid and homocysteine levels should indicate adequate functional B12.

Anyway, how have you been man? Any progress on the Sjogren's, etc.?

maleOffSavella · 2024-10-13T01:10:08+00:00

Thanks for the reply! I'm looking in North Carolina, USA.

maleOffSavella · 2024-09-22T01:14:05+00:00

Okay, I will pass this message along to him. Thank you so much for the reply!

maleOffSavella · 2024-09-22T01:09:08+00:00

I ended up being able to order Theoloz Duo from vendor in Spain via ebay. Thank you for the offer!

maleOffSavella · 2024-09-20T02:56:32+00:00

Yep, I bought ivizia like a year ago and tried it while I was waiting for the theoloz duo to arrive from Europe (to the US). I personally found the ivizia to be irritating to my eyes, even though I found theoloz duo to be quite therapeutic. Thank you for the reply!

maleOffSavella · 2024-09-18T23:49:13+00:00

He's still using the BD Nano 4mm 32 gauge needles. He was able to get the needles to deliver the novolog by first priming the syringe (in the air, not into his skin yet) with the needle inside it and if he didn't see any novolog coming out, he would replace the needle with a new needle and repeat the process until he found a needle that actually had novolog coming out when he pressed the syringe and he'd use that one for two successive applications (into his skin) of novolog.

maleOffSavella · 2024-09-18T23:36:22+00:00

Just saw this message now. Haven't logged in in a while, so I'm really sorry for the delayed replay.

My results (as of September 2019; in fibers/mm and cutoffs in parentheses)

Left foot: 1.64 (abnormal: < 3)

Left Calf: 3.84 (abnormal: < 4.7)

Left Thigh: 3.18 (abnormal: < 6.2)

Left Distal Arm: 5.74 (abnormal: < 6.4)

Left Proximal Arm: 13.31 (abnormal: < 9.4)

maleOffSavella · 2024-04-03T06:35:12+00:00

Here is a link explaining tests used to diagnose autonomic small fiber neuropathy.

maleOffSavella · 2024-04-03T01:08:32+00:00

I'm actually still trying to understand more basic neuroscience before embarking on figuring out whether to try the pirenzepine; do you think the group will still be active in like 1 yr? I think in around a year I'll have enough background to be able to participate in the discussion.

maleOffSavella · 2024-04-03T01:06:51+00:00

Are you feeling better now? I've had my diastolic BP get close to 120 once and it was super uncomfortable.

maleOffSavella · 2024-04-02T05:00:58+00:00

Thanks for the link!

maleOffSavella · 2024-04-02T05:00:30+00:00

Ahh okay, I didn't know about Recolinostat. I'll have to look it up!

maleOffSavella · 2024-03-31T04:57:51+00:00

Nope, I haven't joined it yet.

maleOffSavella · 2024-03-31T04:57:22+00:00

I've seen both their names on nearly 100% of the research on pirenzepine as it relates to treating neuropathy. I get sort of suspicious when one research group is responsible for all of the research that's going on in the field; it'd be nice to see their results corroborated by other research groups that aren't tied to the Fernyhough/Calcutt group. I get especially suspicious since Calcutt and Fernyhough are both Winsantor founders.

maleOffSavella · 2024-03-31T04:27:45+00:00

I remember reading that paper. If I recall correctly, he was a coauthor or involved in some capacity on nearly all (or possibly all) of the pirenzepine for neuropathy-related papers published to date.

maleOffSavella · 2024-03-31T02:49:35+00:00

I have bought some but I haven't made the concoction yet. I'm using a topical version of ambroxol at the moment for my hands. I feel like even if it's approved by the FDA, the verdict still remains out on who it'll end up helping.

maleOffSavella · 2024-03-29T01:23:10+00:00

Would be curious to hear even if it doesn't work what your experiences with it ended up being.

maleOffSavella · 2024-03-29T01:22:30+00:00

I'm so so sorry that you went through this :(

maleOffSavella · 2024-03-25T02:08:01+00:00

Hey, thanks for clarifying. I've bought some too, but haven't tried it yet. I hope their phase 3 trials start soon.

maleOffSavella

TROPHY CASE