Message from notnice

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notnice3 hours ago

Hi everyone, it is notnice here, I was diagnosed with GCA in March 2015 and would like to thank everyone for all their good advice. I have not messaged for a while now as I am using the dead slow to stop method of reducing my preds which seems to be working.

Can I ask if anyone has heard of GCA irritating the nerves as this is what my Rheumy says. I am taking Amitriptyline for the nerve pain but still get pain of some sort, looking at the letter sent to my GP after my visit to the hospital in December my Rheumy states that the Amitriptyline might have to be changed to Pregablin or Gabapentin if it is ineffective. Can I ask if

anyone heard of these tabs or had them prescribed to them?

Notnice.

I am sorry if this message has just come to you DorsetLady I have forgotten how to use this site,

DL - notnice, easier to send a post, just tap on the Green Write a POST tab, or tap HELP along the top of the page

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11 Replies

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  • Polkadotcom has been on the others I think.

    I have to say - it is a new one on me!

  • Can't say I've heard of GCA irritating the nerves before now, but the meds you mention are all prescribed for nerve pain (among other problems). Of them all, amitriptyline works best for me, I've been on it for some years now and still at a reasonably low dose, and it is backed up by Gabapentin. I tried Pregabalin (which is a modern cousin to Gabapentin), but it didn't work well for me, so went back to the Gaba.

    Do let me know how you get on - I haven't noticed any side effects as yet from the two I use, but I am still on low doses of both, so perhaps I've been lucky.

  • Hi, polkadotcom

    Thank you for the information you gave. I am on 50 mg of Amitriptyline and still getting bad sessions they will not let me go above 50mg as it can cause complications, I was thinking of going to my GP to see if he can help as my next appointment to see my Rheumy is in June.

    Keep well and take care

    No nice

  • My Rheumy put me on Gabapentin 18 months ago, I was never sure if it helped much so decided to come off it. For me it was a nightmare coming off, the withdrawal symptoms were awful. I'm still not fully off it, only taking 100 gms a day. I won't go into what I endured but if you Google Gabapentin withdrawal there is plenty to read about. If I had known 18 months ago I would never have started taking it. Of course everyone is different but this has been my experience and there are many many similar accounts. I always feel it's best to be fully aware of all the facts. I don't want to scare anyone but please do your homework. I do hope things continue to improve for you.

  • Hi Dovelady

    You do not say why you are taking Gabapentin and thank you for telling me your experience using it. I will look up the withdrawal symptoms of both medications my rheumy suggested o take.

    Notnice

  • My Rheumy said it sometimes helped with the pain of PMR , I wasn't sure about it but guessed he knew best. I just wish I'd done my research,

  • I think it is fair to say that if it helps in "PMR" it probably ISN'T PMR!!!

  • I agree, I'm not sure it changed anything and having had the double whammy of PMR and GCA I felt it was the wrong drug.

  • I now seem to remember it was given as a solution to the sciatica I had been experiencing. It didn't really help that either.

  • If the CAUSE of the sciatica isn't sorted out - drugs are unlikely to help.

  • Hi what would you actually experience from the nerve pain, I have a burning sensation across the top of my back, mostly on left side of my back, like sunburn, Iike pins and needles and a numbness. No marks on my back, I wondered if it was from the pred, anyone shed light on this😄

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