Hi, i'm a member of HU(f.m.) looking for info. on behalf of my daughter, she is having tests, GCA/PMR, anxious about what it all means?

[tulips123]

[PMRpro Ambassador]

There is no short answer to your question - I could write for an hour and still not be finished!

The first point to make is that if she has PMR it will probably be well controlled with a daily dose of prednisolone of 15-20mg to start with. Then she will reduce the dose to find the lowest dose that controls the symptoms - it cannot be cured but can be managed quite well and quite often goes into remission eventually (anything from 2 to several years) and then you no longer need the prednisolone. If she turns out to have GCA then she will need a higher dose and it will take longer. PMR is inconvenient and painful without treatment but it doesn't kill. It becomes more common as you get older and about half of people over 75 have PMR to some extent. GCA can form a threat to your sight so it is important to get it treated quickly and properly but also is an illness you can live with - but I know several relatively young people who have had it in their 50s and returned to work after treatment. Some were able to stop taking pred after a couple of years.

You don't say what tests - if it is a blood test it won't confirm anything, just increase the suspicion about the diagnosis. If they think it might be GCA then they can do a biopsy of an artery which is positive in about half of cases and if it is is 100% certain. Both PMR and GCA should be diagnoses made on the basis of the symptoms the patient has.

The northeast of England PMR and GCA UK support group has a website (you'll get a link if you google it) with a lot of information all in one place aimed at ordinary patients so easy to understand and all checked by experts. I'm not sure what the national charity has in terms of info as I haven't used their site, all I know is via that site and the medical publications and textbooks that medics use too.

Hope this helps.

[tulips123 in reply to PMRpro]

thank you. worry is, her gp said he has never known anyone under 45 with this. she is 24! i'll check out that link. many thanks.

[Hidden in reply to tulips123]

Hi tulips123,

I don't know if this will be helpful but I wonder if your daughters GP has considered Takayasu's arteritis. It can cause many of the same symptoms as PMR/GCA but occurs at a much earlier age.

If the GP is considering PMR/GCA at such a young age then your daughter really should have an urgent referral to a Rheumatologist. If you go onto the Vasculitis UK website they have an excellent vasculitis roadmap which will supplement the info from the sites already mentioned.

Good luck

Keyes

[tulips123 in reply to Hidden]

thank you so much. any/all info. much appreciated. she does not have the confidence to ask questions herself. ends up phoning me in tears & the expectation The Great Oracle AKA Mum will know! i do like the sound of her gp, which is something i do have much experience in!

[PMRpro Ambassador in reply to tulips123]

Keyes is right - PMR is unlikely in her case although the youngest report in the medical literature is of a 26 year old male who responded in the typical rapid way to pred so they decided it must be PMR in the absence of any other option. PMR is a diagnosis that should only be made after ruling out other things - and there are plenty I'd be more likely to consider in a 24 year old.

Possible PMR at 24 comes under the "refer to specialist rheumatologist" heading. Mind you - I like the sound of this GP if he's prepared to consider PMR in under 50-year olds! We've met GPs who will claim you can't have it if you are under 70.

Good luck - but tell the GP you want to see a specialist and soon.

[tulips123 in reply to PMRpro]

yes will do, thank you. i agree, her gp sounds like 1 of the few with an open mind. she has an apptment again in the morning, so i will make some more enquiries as advised from the helpful members on this site. i can then send her in armed with a list. i gather results of blood tests should be back. she is so tired, run down and fed up with pain.

thank you for the advice.

[PMRpro Ambassador in reply to tulips123]

If as you say you are the oracle - are you too far away to go with her? I always suggest to people they take someone with them if they are having a complicated journey. You rarely "hear" what is being said to you when you are ill, it doesn't matter whether it is something nasty that your brain is in denial about or whether it is something that to someone well would be quite simple. When you are ill your are not "you". With all my medical background and knowledge of PMR and stuff - when I was extra ill last summer I was as much use as a chocolate teapot in comprehending what was going on at some levels. Most of it was fine, I knew the theory and was "coping" well (oh how I hate that word!) but all it needed was one wrong word and I was in shreds. A friend and a notebook - to record what is said, not for legal purposes, for pure practicality.

[tulips123 in reply to PMRpro]

I would love to go, dont live far away, just disabled/housebound. it worries me 'cause even if she takes her list with her, i'm not sure she would say everything she needs to, & as you say, she may not takeit all in. i have read the Vasculitis uk site & it looks bang on to me. i want her to tell them about her history, and family history would appear to be relevant eg. auto-immune. Obviously, i'm not the oracle, my family just think i am, because i go looking for info. i just like to know what is happening. the only person she would trust enough to go with her is her big sis, who is working in Ibiza. i doubt i will sleep tonight, wait for her call tomorrow.. many thanks.

[PMRpro Ambassador in reply to tulips123]

Hmmm - I do understand the problem. Could you speak to her practice - they can't discuss her with you but you could provide some background for them, which a good doc would listen to. Just a thought. Finger's crossed...

[tulips123 in reply to PMRpro]

that's not a bad idea. i'll see how she gets on in the morning, suggest i could fill them in with the background stuff if she couldn't. thank you. much appreciated.