Help

[cardboardcutout]

I have PMR and suffer with Migraine and therefore get very worried about developing GCA and not recognising the difference. Having spoken to my Rheumatologist I have been prescribed Gamopentin - to manage my symptoms better ?? Has anyone else been prescribed this and do you have an opinions on its use ? Thanks in advance

[polkadotcom]

Yes, I've been on Gabapentin for some years now and I know it works for me, but I was prescribed it for Fibromyalgia and nerve pain.

I take 1 tab X 4 times daily. It is an odd amount and not a very high dose but it does help with the really bad nerve pain. I will probably need to take a little more when the cold weather arrives, but am waiting at the moment for a nasty leg injury to heal.

[venezia1]

I too take Gabapentin for nerve pain in my legs. I take two at night and sometimes one in the daytime, but find it makes me very sleepy so don't do that often. It's really helped.

[cardboardcutout in reply to venezia1]

Thank you for your reply it sounds a good drug for nerve pain but not convinced thatci have nerve pain so need to ask more .

[PMRpro Ambassador in reply to cardboardcutout]

Quite - I don't understand why gabapentin would be offered to someone with a PMR diagnosis. Just like pred does nothing for fibromyalgia, gabapentin does not a lot for PMR.

[Doralouise77]

Hi Cardboardcutout (lol, I get such a kick out of the names here...)

Re whether you would be able to tell the difference between a migraine and a GCA headache..... most of the literature I read said 'a new kind of headache' as a criteria. This was an important distinction for me. Everyone's experience is different but I can tell you what mine was. It came on very suddenly with no warning. The pain was severe and very specific to certain parts of my head - the occipital bone at the back of the neck, into the eye and ear and up into the forehead. I didn't feel overall 'ill' as with a migraine and no nausea. It also didn't respond to usual pain meds. It's really strange because after suffering with severe migraines all my life they stopped abruptly about 10 years ago...not one....until this week!.....I assumed it was a GCA flare but the more I live with it the more I feel it's a migraine....terrible nausea, whole body involvement, and most importantly does respond to pain meds, although not completely or for very long.....all characteristic of the migraines I had.....this one is into its 4th day.....is the Gabopentin for migraines? You should get your markets checked too if you do think it's a GCA headache.

Cheers

[PMRpro Ambassador in reply to Doralouise77]

Unfortunately - even the markers don't always help, Up to 20% of patients don't show raised markers, some of them don't even have any GCA-type symptoms until they wake one morning with vision loss. That is called occult GCA.

[cardboardcutout in reply to PMRpro]

Can't say you've made my day with this information but best to know the truth - is there anything one can do to minimise the risk ?Thanks for your response as always your knowledge is much appreciated.

[PMRpro Ambassador in reply to cardboardcutout]

Sorry, no I know what you mean but I see no point in denying the reality There are far too many doctors who are totally unaware of the fact - or deny it - but it is in the medical literature and there several people on the forums who have GCA with normal markers and a couple with occult GCA. The doctor who preaches about occult GCA also insists all patients will have a raised CRP - but that isn't always the case and anyone with no symptoms is unlikely to have had their CRP checked anyway. It IS fair enough to say that anyone with a raised CRP should be monitored and even slight symptoms taken seriously - but again, what are the chances they will be identified?

I don't know how to minimise the risks beyond that, it is a total unknown, one of the famous known unknowns.