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Resolving muscle spasms on Vismodegib (Erivedge)
Posting for the benefit of others who may be suffering from cramps and muscle spasms while taking vismodegib.
Mine had been increasing in severity, disrupting my sleep 6-10 times a night besides daytime spasms. After a deep dive into the hedgehog signaling pathway exploited by this medication, I started using large quantities of electrolytes - like 10x the daily dose. (I use unsweetened drops containing sodium, magnesium, and potassium.) I also added a calcium supplement since that pathway depletes calcium as well. From what I understand, the med doesn't just diminish electrolytes, it drains them almost entirely. This has given me far greater improvement over tizanidine! I've slept two nights in a row now.
Let me know how it goes if you try it!
*Do discuss this approach with your doctor beforehand if you have any other health concerns whatsoever, and let your doctor know if you begin this approach before such discussion. Electrolytes are not to be trifled with!*
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Hi @zapatoquena
Just wondering almost 10 months on if you have continued to have success with this method or noticed any other side effects? Also, has the Vismodegib continued to be effective for you or do you think the electrolytes potentially reduced the effectiveness of the Vismo? Thanks so much for this info!
I ended up adding an elaborate stretching routine -Yogabody- which brought additional relief. I only took Vismodegib for 6 months and then used Imiquimod for a few months.
After stopping Viz I've had the full range of post-immunotherapy symptoms: all my facial and body hair fell out though thankfully I lost only about 1/3 of hair on my head. Then it all grew back porcupine werewolf style and I had ingrown hairs all over for a while. I also have what my optometrist calls Chemo Eye: corneal epithelial cells are shedding and my eyes are filled with dead cells that become a medium for infection. I'm taking Doxycycline every 3 months to clear them but my vision is fried more days than not. I also developed glaucoma overnight, the same week my hair started growing back but they said it's a coincidence. Which I do not believe.
Viz cleared out the majority of the BCC and doctor said I could restart Imiquimod for any recurrence. My ear, the site, has begun to twinge and hurt again recently though nothing is visibly wrong. I have a follow up with my oncologist in 5 weeks and will see what he thinks.
Sorry I can't be more definite. I don't really know how successful it's been. My ear looks great but on balance I feel like a shadow of my former self. Depression is also common after stopping treatment even if it's an unqualified success due to (necessary) inflammation caused by the drug.
@lucye, I'm hoping you saw the helpful reply from @zapatoquena.
Lucy, has vismodegib (Erivedge) been recommended as treatment for you?