Does PMR run in families?

hi karen im just about yr age i dont think anyone has it in my family but my sister has ms and my mum has her own problems ,, like you my blood test came back normal but im also in lots of pain mainly through the night and in the morning ,,im a very busy person foster carer to three and work nights ,,but ive been very tired latley the pains can be unbarable and ive had head aches now non stop for 2 months my doctor says it tress but im finding it hard now to fuction ,,,i was given preds for 2 weeks took my body pain away completly but not head pain thats why he says its tention headache ,,,but now of preds body pain is back so i realy dont no what the next step will be ..

I know someone the same age who has been diagnosed with PMR and her mother has it too. I suppose that does not say it runs in families of course.

You can ask to be referred to a rheumatologist. Have you tried asking your GP for a referral?

It is a genetic autoimmune disease. The question to ask your Dr is what is the level of CRP and SED/ESR. If he doesn't know then ask for these blood tests to be performed because these markers are not computed in most blood tests. That being said, I developed PMR symptoms because I was taking Semvastin (statin) 7 yrs before developing GCA. The pain stopped about two weeks after dropping the statin. With the latest studies you could drop statins for a month to check it out. My wife's family started communicating about health issues after I developed GCA, all had cramps in toes and legs which have been mostly alleviated by taking potasium.

Karen, although there is, as yet, no known cause for PMR and/or GCA, many sufferers have mentioned a parent or sibling having been diagnosed with one or both of these diseases.  

Print off a copy of the British Society of Rheumatologists Guidelines for the Management of PMR and take it to your GP, having highlighted the paragraph on the second page: "PMR can be diagnosed with normal inflammatory markers, in the setting of a classical clinical picture and response to steroids.  These patients should be referred on for specialist assessment."  So either ask for referral or ask for a short trial of Prednisolone at 15mg - if that eases your pain by at least 75% after a few days then you will have your answer.

I had difficulty getting a diagnosis even from a rheumy in spite of being unable to get out of bed without yelling in pain and attending hospital appointments by ambulance and wheelchair - and I did have high inflammatory markers!  Unfortunately because my inflammation wasn't treated for such a long time, I succumbed to GCA a year later.

Don't be fobbed off, it's your body, and good luck.

Thanks everyone for sharing experiences and advice. Obviously I am hoping I don't have PMR as I can see my Dad's continual suffering and hope I don't have 20 plus years of agony ahead. The trouble nowadays is G.P.'s have so much pressure regarding prescribing costs, levels of referrals etc.... And I am not excusing them but I know what is going on in Primary care. I will go to my doctor and ask her to take bloods, refer me to a Rheumatologist. Or prescribe me Prednisilone. I am at the end of my there and did actually burst into tears at my last appointment. She asked if there was anything going on in my personal life. Can't the pain cause me to feel down and frustrated? I told her my family life had never been better. She sent me for x-rays of my hands which showed mild osteoarthritis but the pains on the top of my feet are excruciating and all she prescribed was cocodamol which don't touch the pain. I just want my life back because as everyone with a long term condition knows it really makes you feel low.

Go to the top of this page and select "Proffesional Referances"

Select the "P"

go down and find Polymyalgia Rhumatica

select "Management Of Polymyalgia Rheumatica " and read notes 2 and 5

http://ard.bmj.com/content/early/2013/07/18/annrheumdis-2013-203249.full.pdf+html

Hi Karen I was told that I had P M R in March last year it took months to get a result ,my doctor told me that it was caused by a virus that my body had picked up and that there was no cure for but it was treatable with preds nobody in my family has even heard of it before I got it I was 70 at the time I go it its not so easy to come of perds I got down from 15 mls to 5 mls in 10 months but suffered inflamation all over my body doctor tried all sorts of medication and cream untill he finally put my preds up to 15 ml s again and Iwas better within 5 days so im going to try reducing the dosage as recomended on this forum .

It is not a genetic disease - but there is a genetic predisposition to developing autoimmune problems. 

About 1 in 6 patients with PMR and/or GCA have normal blood tests - it is a clinical diagnosis which should be made on the basis of symptoms and response to a moderate dose (15-20mg/day) of prednisolone. Classical pred-responsive PMR will show a 70% improvement in symptoms within 48-72 hours. 

If you get head pain that doesn't respond to this low dose whereas the pain and stiffness do improve, a trial should be made with 40mg or more - if that removes the head pain it is possibly GCA and aggressive treatment is needed.

If one GP won't listen - try another, it's amazing what a difference that can make. Anyone with symptoms over the age of 50 should be considered for PMR - that's in the guidelines - and even younger people can sometimes develop it. I believe there are many younger patients with it who are dismissed as neurotic blah blah.

If your father were being treated correctly he should have had some return of quality of life - and someone mentioned costs. Pred costs a few quid a month - it's hardly going to break anyone's primary care bank! It is cheaper than caring for a handicapped person. 

Put your foot down, if you are in a relationship, take your partner. I'm not sure about same-sex couples but I can assure you that, disgustingly, when a woman takes her male partner with them it seems to concentrate the mind of a male GP greatly! But search around and insist on a referral if they won't try something themselves.

Where are you? There are some rheumys who have different ideas about blood tests - we can't name them here in public but can send a private message if we know someone local to you.

The Scottish support group, which was one of the first, is based in Dundee. Google scottish pmr and gca support group helpline and you will get a link - in fact, you will get both the helpline number and the number for Lorna Neill in Dundee. I can't put it here, it will be withheld until checked and the numbers will probably be removed. If you have any problems, come back.

There are excellent rheumies at Ninewells (one is a former colleague of my husband's in fact) and Lorna or the helpline will advise you about the best way to proceed. 

Karen I can really identify with UR situation.

do not give up. Go back to UR dr with UR complaints until he finds a reason for UR pain it could be so many things from menopause to Fibromyailga to arthritis to so many things that don't always show up in blood tests. I would see a rheumy for UR symptoms to ask UR doc for a referal.