Grace

When I was diagnosed in 1989 I asked my Dr if it was genetic and was assured that it was not. .10 years before I got back to normal. and off steroids

2 years ago It started up again and within 6 months my eldest daughter who is 46 years has also been diagnosed with PMGCA too

Asking again I find that it can be genetic.

I am beginning to get better after 2 horrendous years but my daughter is still very poorly.

10 Replies

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  • Hi, I didn't realise this illness was even known back in 89? So sorry to hear it has returned to yourself and now your daughter also. I myself am only 48 and newly diagnosed. Best wishes for you and your daughter. Sue x

  • Hi Wrongtrousers,

    This illness is almost certainly genetic. I have had it for 19 months and I realise that my father also suffered from PMR, but was never diagnosed.

    I am so sorry that you are having to go through the whole sad business again, and are watching your daughter suffer too. I can't imagine what you must feel. I have two daughters myself and two granddaughters and I can't even begin to imagine what I will go through if any of them have to deal with what I have experienced. My only consolation is that I might be able to guide them back to health again.

    I have, from the beginning of my developing PMR, known that if the illness goes dormant I will always carry it and, therefore, it will have an ability to flare unless I take life a little easier and do not push myself to the limits. This way of life does not sit easy with me. In my youth I lived on adrenalin, but now I know that if I want to live a long life, to be there for my kids, I have to pace myself.

    I have no idea as to how you have handled the resurgence of PMR, but I realise that it has been a struggle and now, as you are beginning to win you have the worry of your daughter's condition.

    Take heart from the fact that you are very experienced, and will be able to offer support to her.

    My take on this illness is. Thank our lucky stars that PMRGCA. is now being taken seriously. Not that may years ago GPs thought that this was an illness that effected elderly ladies in the twilight of their life. Just a normal part of the ageing process.

    I think that PMRGCA has, in the past, been hugely undiagnosed.

    My illness started with a wrench injury, from which I never recovered. Two months later I couldn't get out of bed. I have been up and down on pred. twice now. 30mgs each time. The two GPs concerned knew it was PMR from my immediate response to steroids. My blood tests showed no inflammation whatsoever. The specialist who confirmed the condition said I was classic for PMR.

    19 months later I am down to 7mgs and feeling pretty good. A bit achey, but I can deal with that, and in the past few months there has been a huge increase in my strength. What I do now is listen to my body. I realise that it talks to me. It tells me when it's had enough and when I need to go to bed. It says what I should eat and how often etc, etc.

    Dealing with PMR and GCA begins with a good rheumatologist. They have the knowledge and ability to guide a patient through the handling of these conditions. Once the illness has been stabilised, the drops in medication should be done very carefully. Too bigger drop and PMR can flare dramatically and must be avoided at all costs. GCA has to be handled even more carefully.

    If I have given you any useful advice then I am so pleased. I wish you and your daughter well in the future.

    Pats.

  • My mother has had PMR since 1985 - she was 64 when diagnosed. At one time she took part in some research and was told she had taken steroids for the longest time of anyone with PMR in the UK - not a record you want to hold!

    Her pain started in her head and she thought she had a brain tumour - so maybe this was CGA. She was lucky as a young doctor she saw at her surgery had just done a course on PMR and put her immediately on steroids.

    At 91 years she is still on 15mg - has been off them a few times. She is on many other drugs too probably because of the long-term steroids. She can't walk too far but is fine about the house and is very with-it.

    Last November at 64 I was diagnosed with it. I have only recently managed to see a rheumatologist and have had lots of tests. She thinks it just might be fibromyaelgia but she says it is very hard to tell the difference. I am now down from 20mg (my third effort to reduce) to 13mg/14mg on alternate days; next week I will do 13mg each day and so on. I feel much better than I have done but have pins and needles and cramps often.

    Whatever it is I think it is likely to have a hereditary influence!

    My grandmother in her 60s used to have bad cramps and we will never know for sure but I suspect she may have had PMR too.

    Hope your daughter improves soon.

    Penny

  • Hi

    back in 1989 my Dr sent me to see a" specialist" who seemed to think I was making a mountain out of a mole hill and that I had a frozen shoulder after three attempt's of manipulation under anesthetic I think he gave up but my own Gp who knew me well and what a active person I was normally took blood test and announced that I had PMR. He told me that he knew nothing about it. I contacted my youngest daughter who was in USA and told her the verdict and she being a DR was able to get hold of a lot of information which she sent to my Gp. He started me off on 30mg of steroids but within 6 weeks I had sever pains in my head so my Gp then referred me to Bath Rhematology Hospital where my steroids were uped to 65mg. He was an excellent rhematologist.

    This time round we have moved and my present Gp seem to know nothing either and is only treating me on what I say as he says I am more experienced in the mater.

    No referring me to a rhumatolagist even though its been worse this time with horrendous side effects from the steroids which include....3 dvts ....3 stomach ulcers.... steroid induced diabetes....... calcified stones on the brain......brain fog..... memory lost. to the extent that I could not read....etc etc.

    My elder daughter who also has PmrGc has been to see a rhematologist who says that she cant have pmr as she is too young and that he very much doubts if her mother has had it too.....she is 46years she now has a new rh2matoligist.

    I am now feeling much better and am now down to 7mg from 65mg and am now able to read and recognize my letters hence I am able to now type.

    Grace.

  • Hi Grace,

    The question regarding PMRGCA and heredity, I'm sure you've answered it for all of us. As for GPs and their ability to evaluate the symptoms of this illness, well I guess that it's the luck of the draw. The GP who put me on 30mgs of pred. had a pretty good idea that I had the illness and she was right. My own GP. when I saw him said he didn't think it was PMR, just a strain injury. Seven weeks later, I saw a specialist who diagnosed PMR again. By then I was only on 3mgs of pred. plus large amounts of ibuprofen. Within no time at all I had a relapse and the pred. was put back up to 30mgs. That was 9 months ago. I'm now pretty good and on 7mgs. My present rheumy is very clued up and leaves the drops in med. to me.

    You've had some pretty aweful side effects from the steroids. It must have been very hard to cope at times. I'm so glad you're feeling better and congratulations on getting down to 7mgs.

    Your daughter is young to have PMRGCA but at least there is more understanding of this illness nowadays, even though there are doctors still who don't have a clue.

    Pats.

  • I have suffered with a lot of pain for a few years now but only diagnosed 3 weeks ago by my GP eventually looking at the whole picture. I am almost 49 so was prob about 45ish when first started to complain about pain etc. I was also led to believe by booklets and online that this is an older persons illness but my son who is an ICU nurse and a sufferer of Ankylosing Spondilitis told me he knows of lots of people with PMR younger than me. My GP asked if I knew anything about PMR and I told him only what I read online. I am more prepped for my return visit on Tuesday thanks to this group.

    Your side effects sound horrendous. Hope you feel better soon.

  • British Society Rheumatologists have issued Guidelines on the Diagnosis and Treatment of boht PMR & GCA. These are available on their website, the NHS website and also from PMR GCA uk a registered Charity and Under Useful Medical Information on pmr-gca-northeast.org.uk. Knowledge is power.

  • I don't doubt that there is a hereditary factor. My father had PMR in 1988. They didn't call it by that name but simply told him that his immune system was attacking him - patronising medics! He was a highly educated man and could well have understood a full explanation. fortunately my sister is a doctor and could fill in the details. His response to steroids was as dramatic as mine, 23 years later. He died the following year, though from unrelated causes. I've been on pred for 13 months now and occasionally struggle to get up in the morning. I'm alternating 6 and 5 mg but next week will go down to two days on 5 to one day on 6 and see how that goes. Good luck to you Grace.

    Anno

  • Dear Anno,

    You say that sometimes you still struggle to get out of bed! That's not good. I was put on 30mgs of pred. initially. It knocked the pain out in 3 hours and I have never struggled to get out of bed since. My drops have been very gradual. I'm now on 7mgs and with my Rheumy's consent, I will drop by half a mg. when my body says it's ready. The pain I had in the beginning has never returned, but sometimes I feel achey and tired and so I try to take it very easy and don't even think about dropping the dose. When MY! body tells me it's ready I will make a half a mg. drop. I then get some drop in health for a while. I expect this and sit with that dose until I feel OK. again.

    The lower you go with the drops, the more easy you have to take it. Once you get below 7.5mgs of pred. you are nudging your adrenal glands to start to wake up. They've been asleep for a long time and you must take it real easy. Listen to your body and act accordingly.

    Every one of us is different, I know, as to how we react to our illness and the effects of steroids. Therefore, our treatment regime must be fine tuned to our own needs. Surely, it can never be planned ahead.

    Pats.

  • The medical community does now recognise that PMR and GCA almost certainly have a hereditary element for many people -- which in turn is likely related to having certain regional backgrounds. It occurs in a higher rate in Scandinavians for example -- and also in parts of the US with higher Scandinavian populations (northern midwest). But it's also believed there are environmental triggers, and that these are more likely to trigger the problem in those with a hereditary predisposition.

    The good news is that genetics has advanced hugely as has molecular biology, and a lot of research is currently in the area of complex autoimmune diseases. :)

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