Thank you

[Skrtjg]

Thank you , we are new to this and our dr only has one other patient with GCA .

[DorsetLady PMRGCAuk volunteer]

Know the problem! I was diagnosed three years ago on 14th Apr after 18 months of not knowing. GPs are very slow at recognising PMR, which is more common, let alone GCA. DL

[pollyg263 in reply to DorsetLady]

hi doeset lady you started the same time as me with 18 month before diagnosed

I would be interested to know how many mg of pred you are on now . i am on 2 mg. had to raise from 1mg 3 weeks back. as I had a flare. much of the flare pain has now gone. leaving knees quite painfull. but I am wondering now if it is pmr knee pain or weat and tear. I will ask doc on my next visit in 2 weeks

[DorsetLady PMRGCAuk volunteer in reply to pollyg263]

Hi pollyg263,

Started on 80mg - being diagnosed in A&E after losing sight in right eye.

Am on 5mg at present. In the past have got down to 12mg (March 2013- GP put back up to 20mg) and then down to 15mg in June same year (back up to 25mg). I had raised blood markers but no symptoms, so in hindsight and with greater knowledge now I think my GP was being ultra cautious (but as she missed the diagnosis in the 1st place not surprising really). Don't think it was flare, just raised markers caused by something else.

From June to Dec 2013 reduced to 13mg, changing GPs in meantime.

Since Jan 2014 have used slow reduction plan (mine taking about 5 weeks to get from old to new dosage) reducing by 1mg until 7mgs, then by 0.5mg per reduction. Do a rolling reduction i.e once on new dose for a complete week, if okay go on to next reduction plan. The only time I didn't was when I was in New Zealand with my daughter for 6 weeks over Xmas/New Year when I stayed on 6mgs for just under 3 months overall (with no problems).

Can't help with your knee pains, sorry, all of my pains were across my shoulders/head etc, although I do have OA in my left knee, but although inflammation related it is different - if that makes sense!

Yours could be wear and tear pains which have been masked by the higher doses of steroids, but now you are down to 2mgs not enough to help. Do you take anything else to help, I take Co-Codamol for my knee, although I have been able to reduce that recently .

How have you managed your reductions, and do you think 2mgs is enough. Perhaps you have reached your optimum level? Think you need to discuss with GP - maybe an x-ray would be worthwhile to clarify the knee situation if he doesn't have a answer to it? Good luck anyway. DL

[pollyg263 in reply to DorsetLady]

it was taling me 6 weeks to reduce 1 mg. but it sounds like you gca being on such high level. I do take paracetamol if I have done anything too much like this morning I have changed 2 beds so straight after I took para just tp ward any pain away

I go to turkey 4 weeks next week so I would like to stay on 2 mg till I return

[DorsetLady PMRGCAuk volunteer in reply to pollyg263]

Yes, a good idea to stay on present dose whilst you're away on holiday, and for a couple of weeks afterwards. Sometimes the extra stress that a holiday/flight puts on the body takes a while to manifest itself. I flew from Manchester to Southampton on Thursday after spending Easter with my son and his family. Felt very good whilst I was there, but on Friday felt wiped out. Still feel a bit shattered today, so I shall stay on 5mg for a bit longer before I reduce to 4.5 . Enjoy your holiday, am away to Spain at end of May. Whoopee!

[Celtic PMRGCAuk volunteer]

By your "Dr" are you referring to your GP? It is true that GPs rarely come across a patient with GCA, but such patients should be under the care of a consultant rheumatologist anyway. The following link will take you to a paper on the management of GCA which your Dr should read: rheumatology.org.uk/include....

Also, your friend might be interested in the book 'Polymyalgia Rheumatica and Giant Cell Arteritis: a survival guide' by Kate Gilbert, who is Chair of PMRGCAuk, and a past sufferer of PMR. The book is available on Amazon for £5.99 plus P&P, or direct from PMRGCAuk.

[Skrtjg in reply to Celtic]

I ordered the book. Thank you

[PMRpro Ambassador]

Most GPs have never seen a case of GCA never mind have one on their books! It counts as an "orphan disease" because the incidence is so low.

Read all you can from the PMRGCAUK sites to inform yourselves - and as Celtic has said, GCA belongs in the hands of an experienced rheumatologist. Few GPs know enough about it to manage a patient properly although there are exceptions.