GCA: I have just received a leaflet from Arthritis... - PMRGCAuk

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JanboC
JanboC

I have just received a leaflet from Arthritis Research UK, and it is very informative. It does say that it usually takes 1-3 years to come off steroids altogether and that it isn't always possible to stop them completely and some people will need to be on a low dose for a long time. Also, it says that GCA is sometimes associated with PMR, and about 40-60% wit GCA may also have symptoms of PMR. As I don't really have pain and stiffness maybe that's why I haven't been referred to a Rheumy? It is a really good booklet, well worth the 3 weeks wait for it!

10 Replies

Some of our doctors should read it. Thanks for the head’s up.

JanboC
JanboC in reply to SheffieldJane

Yes, just what I thought

DorsetLady
DorsetLadyPMRGCAuk volunteer

Hi,

Leaflet bit optimistic in the 1-3yrs, would be better if it said 2-4yrs - and that may be pushing it!

If you have GCA you should at least see a Rheumy once (even if he discharges you back to GP as mine did). GCA can have more serious implications than PMR, and although you may not be in pain, that only means the Pred is working. Or are you saying you didn’t have pains pre diagnosis?

I had GCA only, and I think the possibility of getting PMR is slightly lower than their leaflet suggests. Pains in shoulders can be either GCA or PMR, whereas in hips/knees is definitely PMR.

JanboC
JanboC in reply to DorsetLady

I had stiff shoulders and neck last December, but that went away soon after. No pains in legs or thighs.

DorsetLady
DorsetLadyPMRGCAuk volunteer in reply to JanboC

In that case, I would guess GCA only. But you should see Rheumy.

JanboC
JanboC in reply to DorsetLady

I am seeing my GP next Tuesday. I will put in my long list of questions that I have and let you know. Thanks for your concern

PMRpro
PMRproAmbassador

Hmmm - 1-3 years? In their dreams...

But no ifs or buts - GCA belongs in the hands of an experienced rheumy. Trouble is - you have to find one.

I guess only UK residents can obtain this?

Would be so good to show my rheumy, an official booklet.

PMRpro
PMRproAmbassador in reply to Mstiles

If you google "arthritis research Uk pmr leaflet" the first link that came up for me is a PDF download with the URL starting with this;

arthritisresearchuk.org/.........

That isn't the entire URL so doesn't work but when you click on the box it will download the 20 page booklet. I'm in Italy so it obviously has an internet passport!

On the other hand - if you go here:

arthritisresearchuk.org/sho...

there is a link to download it from their site.

Mstiles
Mstiles in reply to PMRpro

Thank you for the links and for googling for me. I appreciate it

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