GABAPENTIN

Hi ... is anyone using gabapentin for sweating or itching or any other PV symptom. ??

[JediReject]

Hi Keiks, , both my father and sis in law take this but for nerve related issues . I believe it can be used for epilepsy and more serious conditions like MS where normal painkilling drugs are ineffective.

If offered it for MPN symptoms i would want reassurance that it was suitable as it doesn't seem the right sort of drug from my limited knowledge and I've not heard it mentioned in an MPN setting.

Have you been offered or are taking it ?

Regards Chris

[Hidden in reply to JediReject]

No not taking it and I read that some PV patients have used it to help with the sweating and itching... but I am concerned about the side effects, etc so I decided not to try it... !!

[JediReject in reply to Hidden]

Wise I think. . My Sis in law was switched to Pregabalin which suited her much better and my Dad wasn't too well after taking his for a while.

Ruxolitinib put a stop to my sweats and itching and generally made me feel much better and increased my appetite. Unfortunately it did nothing to shrink my massive spleen or halt the march of my MF so I was on it about 14 months prior to my SCT.

Good Luck. .

[Gabrielle79]

hi Keiks, i have used Gabapentine to see if it would do something on the ( severe) pain i have due to my erythromelalgia : it did not. ( only when starting on clopidogrel it got a bit less) Itching and night sweats have significantly gotten better after starting Pegasys...

[hunter5582]

Have not used Gabapentin, but did try Lyrica (pregabalin) for pain associated with osteoarthritis/systemic inflammation associated with JAK2 mutation It did not help and had undesirable side effect - difficulty with concentration. Enough that i actually found it dangerous when concentration was needed.

What I did find that helped was to control the actual source of the problem - inflammation. I found that a Curcumin supplement worked better than Lyrica, prescription topicals, and prescription NSAIDs (ibuprofen, meloxicam). I have not needed nor taken a NSAID in over 4 years since I found a good curcumin formulation.

I do not know if that precise intervention would work for the itch and sweating. I do wonder if you could find something that would more directly address the underlying issue rather than just inhibit the nerve impulses. Ruxolitinib is often recommended for people with MPN itch. Topical agents like Eucrisa may help with localized itch. (I use Eucrisa for eczema outbreaks - It works great).

Hope you find a viable solution soon.

[Hidden in reply to hunter5582]

Thankyou Hunter ... I decided not to try it.... the itch/pinch/burn is so bad that I’m willing to look into anything... I’ve tried so many different things and I’m not a the point where Pegasys would be prescribed ! 😩😩

[hunter5582 in reply to Hidden]

What about Ruxolitinib? It is supposed to work well for the itch. It is the go-to med for this purpose with MPNs.

If you do not want to go that route, or even until you do, suggest trying an effective topical. I learned about Eucrisa, which is a PDE4 inhibitor, from my dermatologist. I use it to treat eczema. Several episodes prior to Eucrisa were terrible. Truly awful. Eucrisa stops it dead in its tracks. I asked the dermatologist about Eucrisa for pruritis and she said it would work for that as well.

The other thing is prevention. The obvious no hot showers is not enough. You have to identify all potential triggers. The MPN makes our bodies react in bad ways to things that do not bother other people. I don't know if this will help, but some things to try: do not use soap to bathe - use ceramide-based cleansers (e.g. CeraVe Hydrating Cleanser), maintain a healthy skin moisture barrier using a ceramide-based cream (e.g. CeraVe Cream), do not use laundry detergents/fabric softeners with scents/dyes. I do not know if these things will work for you as well s they do for me, but I am thinking it best to give your skin the best chance you can to calm down.

The underlying issue is related to the other part of what the deregulation of the JAK-STAT pathway is doing in terms of inflammatory cytokines and histamine production. Ultimately, that is what needs to be addressed to really get relief.

I hope you find relief soon.

[Loooonglife in reply to hunter5582]

Hi Hunter,

Which specific curcumin formulation works for you? Conventional curcumin has low bioavailability and limited efficacy.

Thanks!

[hunter5582 in reply to Loooonglife]

I use a blend with a curcumin formulation called CurcuWin. It is found in various brands. It is what my Integrative Med doc recommends. I use the Spring Valley Brand, which I can actually get at my local WalMart. Dose = 550mg twice a day. (500mg Curcuwin + 50mg Turmeric). You are correct that bioavailability is the key issue. I think dosing is person-specific. This is the dose that works for me and causes no adverse effects.

[Loooonglife in reply to hunter5582]

Also, any recommendation for the daily dose of curcumin?

[Dazakella2010]

I would not recommend this drug for these symptoms.... it is a very strong drug and if you ever need to come off this medication you would need to wean off of it as it causes extreme withdrawal symptoms. Gabapentin is the same as pregablin..... pregablin is the sister drug but it’s more expensive so doctored prescribe gabapentin.

[Hidden in reply to Dazakella2010]

Thankyou.. I was actually starting to feel that it’s probably not a good idea .. so I decided I’m not going to try it!!

[Handysmurf]

I have neither PV, itching or night sweats at the moment. Hope not to - currently just ET CALR 1, but Gabapentin is on my list of drugs I never want to cross paths with again. It’s nasty stuff - it was prescribed it by my primary care physician for nerve pain at which it was mildly effective. When I took a Valerian root based natural sleep aid while taking Gabapentin it caused a very nasty allergic reaction to my breathing. Admittedly I had pneumonia at the time although at the time I took both medications I did not know I had pneumonia which no doubt worsened the allergic reaction.

I agree with hunter5582 seek natural treatment. I’ve had great luck with products from thepeopleschemist.com

[Hidden in reply to Handysmurf]

Oh wow !! That’s scary bad! No I’m not using it!!

[sammpn]

I use Gabapentin (aka Neurontin) to help with neuropathic pain. Sometimes I've been at the maximum dose (1200mg 3x a day). When my platelet level was increased, I still had itching after contact with water. Was it less because I was already on Gabapentin? Hard to say. Now that my platelets are under control with Hydroxyurea, I'm not having very much itching. (And, btw, I had a much worse time adapting to HU than to GB, and HU is known to have side-effects that last after one discontinues it.)

That being said, if you're having itching, try Gabapentin. The side-effects (like sleepiness) go away after you stop taking it. Pregabilin (aka Lyrica) is not the "same drug" but it does hit the same receptors in the brain (according to my pain doc), and requires only 2x a day dosing. I was also on Gralise for a while, which is a time-release formulation of Gabapentin that one takes just once a day. I preferred that over the high dose of Gabapentin I was on, but now I'm on a lower dose. I gather that Horizant is a similar drug, also just 1-2x a day versus Gabapentin's 3x a day dosing.

The side-effects and benefits of these drugs are quite individual. I did feel more sleepy with Gabapentin, but I accommodated to it, and it helped reduce my nerve pain. Although some people swear by Pregabilin, and my doctor encouraged me to try it, I didn't find it as effective and it caused weight gain. So--for me--back on Gabapentin.