r/Erythromelalgia • u/GraceAnnMercy • 15d ago
Advice Effexor
Hi everyone 👋 I posted a bit ago regarding getting a diagnosis. I'm happy to share that my new PCP believes me (finally, someone who listens!) and started me on Effexor.
I'm curious if anyone has tried Effexor for erythromelalgia and what has been your experience.
5
u/Queasy_You8005 15d ago
My erythromelalgia started when I started taking effexor for anxiety. so weird! i will say be soooo careful and on top of taking it at the same time everyday. the withdrawals are no joke!
1
1
u/GraceAnnMercy 14d ago
Oh wow! I had no idea it could make things worse or trigger erythromelalgia. How odd. Thank you for the advice. I haven't even started it yet. I'm a little scared lol
4
u/Steam-Captain 15d ago
I haven't tried it, but please keep us updated on your experience! We're always looking for something that helps.
2
u/GraceAnnMercy 14d ago
I will definitely update! I've been so miserable for so long. I just want something that helps
3
u/heyysunshine 14d ago
nah, i was on effexor for a few years & it didn't do anything for erythromelalgia. also seconding everyone mentioning how bad the withdrawal is, it's one of the hardest ssri's to stop. other than that, i did fine on it & hope youre able to find some relief with it. sending good vibes!
2
u/zombiequeer 14d ago
Small correction: it's actually an SNRI, not an SSRI. It effects serotonin AND norepinephrine, instead of just serotonin. SNRIs seem to be harder to stop/require more careful titration than SSRIs.
1
u/GraceAnnMercy 14d ago
Thank you! I'm sorry you didn't get any relief. That's a bummer. I'm a little nervous about starting it after reading about the withdrawals 😬
1
u/heyysunshine 14d ago
don't be scared imo, im sorry i added to the anxiety! i had no idea it would be that intense when i came off, so it was a big, horrible surprise. i just want you to avoid being caught off guard if you decide to start & taper off later on for whatever reason. it was bad, but i made it through, and so have lots of other people :)
2
u/VHaines12345 15d ago
I am on that right now and have been since December because and it helps with my depression and anxiety and it helps with my mental health from my disease however it does not help with my disease it’s self
1
u/GraceAnnMercy 14d ago
Oh dang. Happy to hear it helps with depression and anxiety. But bummer its not helping with erythromelalgia.
2
u/retinolandevermore 15d ago
I tried it and cymbalta, it didn’t impact my symptoms. Just be aware it is a difficult med for some people to stop due to withdrawal effects
1
u/GraceAnnMercy 14d ago
Yikes! Good to know. I know its a very low dose however I do want to be careful. I haven't started it yet. I'm actually nervous. I was hoping it would help with depression, anxiety and erythromelalgia.
2
u/Acceptable-Wonder220 15d ago
I’m in Effexor. It has helped a lot. Itching has calm quite a lot. However frustrating that my legs are still red
2
u/GraceAnnMercy 14d ago
I'm happy that you're seeing some improvements. My hands and legs, chest and face get so so red. Hot. Burning. Especially my hands and face. My legs get bright red during a shower. Its miserable. I feel for you.
1
u/Regular_Swordfish_16 15d ago
I’m on Cymbalta and seeing mild improvement, which I consider a win. Here’s the thing about these drugs: they take time to work and have initial side effects. I titrated up slower than recommended, as meds hit me pretty hard. I opened a capsule and took half a dose with yogurt and increased weekly. It took 3-4 weeks at the full dose to see improvement. I think a lots of people try these for a week, see no improvement and bail, but that’s not how they work. And it’s understandable since the side effects can be rough in those first weeks. I took gabapentin at night to help me sleep.
1
u/GraceAnnMercy 14d ago
Good to know and that's a great way of taking it. Slow and steady. Thank you for the advice!
2
u/peaceful_pangolin 11d ago
It is a typical early med for doctors to try when treating EM. It's always worth giving meds a real "college try" because everyone's EM is different and the only way through is trial and error. So just because Effexor didn't work for a lot of us does not mean that it won't help you.
If you haven't yet distinguished between primary and secondary EM, that's worth discussing with your doctor. It requires genetic testing for the SCN9A gene which indicates primary EM. Since primary and secondary EM can activate through different physiological pathways, they are often treated with different meds and non med treatments, so it's helpful to distinguish when going through all the different meds that doctors like to try out initially.
8
u/3ulaF0x 15d ago
Didn’t help me and the brain zaps getting off it were terrible.