HI, Since being diagnosed with Raynau... - Scleroderma & Ray...

Scleroderma & Raynaud's UK (SRUK)

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HI, Since being diagnosed with Raynaud's and Scleroderma I have suffered with rapid onset neuropathy I have lost surface skin feeling.

Helen58 profile image
7 Replies

from head to toe including teeth. I have just been prescribed Gabapentin alongside my methotrexate. Does anyone have experience of this drug.

Thanks

Helen

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Helen58
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7 Replies
CharleneakaCharlie profile image
CharleneakaCharlie

Hi,

I started with three pills a day to having to take 6 a day to try to keep the pain or burning feeling in check. I just found for me it would make me tried until it got in my system. Some day even after taking for a while I would get those days I would be more tired then others. I was having pain or burning feelings from the treatment I was taken to get the fibrosis in my lungs from the Scleroderma. I now have Raynaud's, Limited Scleroderma and Fibromyalgia. The Gabapentin (Neurontin) for the most keeps the pain or burning feeling in check. I find when I get stress it still flares. I wish you the best.

Helen58 profile image
Helen58 in reply toCharleneakaCharlie

Thanks for the info, I am not yet sure if I want to take these. I am seeing my GP next week and I think I will ask his advice, my main problem is lack of feeling affecting me more than the electric/tingly feelings though I do go so hot at time I think I'm going to self combust.

Thanks again. Helen

steadfastsenior profile image
steadfastsenior

I gained 10 pounds in 3 wks with Gabapentin, and it did not help. Off it now for mos. Look into an on line product called Neuropathy support formula, vits B1 and B12 and r-alpha Lipoic Acid. neuropathytreatmentgroup.com/

It has greatly reduced the neuropathy, hardly have any pains from it after 2 mos on the supplement.

I'm in Toronto.

Helen58 profile image
Helen58 in reply tosteadfastsenior

Thanks for the reply, the last thing I want to do is gain weight. My sister ( a pharmacist living in Toronto ) recommended this but I may ask her about the support formula and try to find out if it is available in the UK. I have also read about the poss side effects of depression and anxiety which I had when on a drug called Larium and I want depression even less than gaining weight so I will do a little more research before taking these.

Thanks

Helen

steadfastsenior profile image
steadfastsenior in reply toHelen58

The weight gain from Gabapentin is a side effect, it took me a while to dig into cyberspace to see , but many blogs cite it. I like going with more natural things like B vits. This formula really has taken the burning/stinging pain away. It is best for you and your sis to visit their web site.....i have recommended this to pharmacist friends here as it seems to work and few side effects

britty profile image
britty

Yes I am on it three in morning two afternoon and three at night

Helen58 profile image
Helen58 in reply tobritty

Hi Britty

How are you finding the side effects and what are the benefits ?

Helen

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