13 years GCA/PMR

Hello you lovely people.

This is the first time I have posted so I'm a little nervous. I was diagnosed back in April of 2003 with GCA/PMR - at the tender age of 53. No biopsy because GP and Ruemy started me at 60mg Pred immediately. I have never worked since (now retired). Within those years I've had a few 'mishaps' - Bacterial Meningitis - wet AMD in right eye (now have a hole in the retina after having 21 injections in this eye over 2 years) - dry AMD in left eye - mild heart attack. But at the age of 65 I'm still here - I'm just a stubborn old bird really. Still taking Pred but usually on 4mg unless I have a flare. I've tried MXT(?) but it didn't agree with my liver so I'm staying on Pred.

My question is this. One of my brothers (I have four), developed PMR also at the age of 53. Has anyone investigated as to wether these illness run in families. My parents seemed to be free of them but they both died fairly young, Mum Was 58 and Dad was 67.

I have learnt more about these illness from this wonderful group than from any doctors/web sites/etc. It's so nice to know I'm not alone in East Anglia!

Sorry about my long winded post.

Sandra

21 Replies

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  • Hi Sandra,

    From one stubborn old bird to another - welcome.

    Don't know whether any research has been done into whether GCA PMR is hereditary, but certainly there are a few people on this forum that seem to think that their mothers (usually) may have suffered from it as well.

    With your long experience of the problem I'm sure you will be able the help those recently diagnosed. Take care.

  • There is a genetic association for PMR/GCA - in that it is more common in populations where there is a strong Scandinavian ancestry. Obviously your family antecedents have the same ancestry as you! My mother didn't have it - but her father almost certainly did. An aunt on her mother's side also very probably had PMR. If you think back most of us will have had a relative who was a martyr to rheumaticks - it was probably PMR but not recognised, and in those days not treated as they didn't know anything would help. My relatives had it in the 50s - pred was barely in its cradle then. It was used in high doses for people with arthritis who were in wheelchairs - and they got up and walked. At least some of those patients almost certainly had PMR, there would have been too much joint damage for RA patients to recover so dramatically and that speedy and notable improvement in the symptoms is typical of PMR rather than other sorts of inflammatory arthritis. Once the long term side effects of high dose pred were recognised doctors were scared to use it - as many doctors are nowadays too. So, they were left to suffer.

    Both PMR and GCA are generally believed to be autoimmune disorders - and that is something that does tend to run in families and when you have one already you are more likely to develop another.

  • Very interesting

    On my maternal grandmothers death certificate it states.... Rheumatoid arthritis, she was only in her late 60s. perhaps like me it was PMR/GCA ?

    It could have skipped a generation as my mother and her 2 sisters didn't have it. I wonder what she was treated with in those days 1940/50s. My mum is long gone so can't ask her,

  • It may have been I suppose - though RA came with severe disability and joint deformation in those days, even until relatively recently. DMARDs make such a difference so that the deformed joints are quite rare now. I don't think there was anything to treat it then.

    Sulphasalazine was the first approach as a DMARD in the 1940s:

    everydayhealth.com/rheumato...

    Remember too that in the 40s/50s someone in their 60s was elderly. My gran died at 74 in the early 60s and was really old.

  • I'm sure these inflammatory, autoimmune conditions "run in families". We hear of so many people who say that their mothers had either PMR or GCA. I heard of two elderly sisters, now sadly passed away, who had PMR a few years ago. My father's mother was confined to a wheelchair and died young when he was only fourteen. His sister, who had moved to America, lost her eyesight and passed away when I was a toddler. I have asked myself in the past whether they were the source of my PMR and GCA.

    Please don't be "nervous" about posting, Sandra, and you'll never be alone whilst we are all around! You do know there is a support group that meets in East Anglia don't you - at Needham Market, if you're anywhere near.

  • I will definitely look into the support group - Needham Market isn't that far and I think there might be one in Cambridge. I have been very lucky with my GP and Ruemy (Addenbrookes Hospital). I certainly can't complain about my care like some of you poor folk.

    Thank you so much for all your replies.

    Sandra

  • I gather Addenbrookes has a superb multi-disciplinary vasculitis group which will include rheumatologists - anyone who is in striking distance of them would be well looked after there I think. I believe it is worth travelling a bit further to get real experts who will listen to you properly.

  • Addenbrookes is a great teaching hospital who have saved my life several times. Rheumatologists there take our conditions/complaints/worries seriously and I am so lucky to live only 20 miles away.

    Get there if you can.

  • Sandra, yes there is also a group that meets in Cambridge. You will find contact details for both groups by scrolling down the list on the following link:

    pmrgca.co.uk/groups/

  • Thank you for this info. Had a look and I will be joining up with the group in Cambridge. I've decided I must be getting old - looking forward to meeting other people so we can talk about our ailments !

    Thank you everyone x

  • I'm another tough old bird, 14+ years, but who's counting?

    I can't put down all my current ailments to PMR or GCA (but I do when I am cross with it all). Unfortunately I can't trace any ancestors who may/could have had it either - definitely not on my mother's side. I must be a one-off!

    Hope you enjoy the forum and the support group, Sandra. Look forward to seeing you post.

  • Hi Sandra,

    I was diagnosed with PMR in June at age 52, then in the Fall with Fibromyalgia.

    Both my mother and her mother had it as well. My grandmother, who later died of breast cancer, never got a definitive diagnosis. But looking back on it, her symptoms were very similar to those of both my mom and I. My mother was diagnosed with Chronic Fatigue Syndrome and Fibromyalgia and had to take early retirement. She died at 79 of complications from stroke. Because of the vascular nature of her health issues, I believe she actually may have had PMR/GCA that went undiagnosed. We are of Norwegian descent and everything I've read suggests a strong genetic link.

    I've been on prednisone for six months and have tapered to 12.5 mg. I'm also on 1,500 mg daily of Gabapentin for the fibro. Also just diagnosed with prednisone induced type 2 diabetes, in addition to a few other existing health conditions such as degenerative disk disease, hypothyroidism, polycystic ovarian syndrome, and chronic depression/anxiety.

    I haven't worked in six months and am seriously considering whether I want to work anymore. With all the mounting health issues, I've rather lost the will to work. Plus, it seems like my days are filled with managing my health. My husband is 64 and retired.

    Looking back on it, are you glad you made the decision not to return to work? Perhaps you had no choice? It's a difficult dilemma for those of us at the height of our careers. I find myself mourning not only the loss of my health, but also my professional identity and the life I once knew.

    Cheers to you 13 years later! I hope you're feeling better these days! I'm sure you have a wealth of knowledge to share with those of us recently diagnosed.

    Warmest regards from the USA!

    Kitty

  • Oh Kitty, you poor soul. My youngest daughter has ME (CFS) & Fibro. She is 38 and is no longer able to work. She lost her eldest son, Joshua, 5 years ago to cancer when he was 8 years old. The doctors put everything down to her grief until 1 year ago and she then had a proper diagnosis given. She misses the companship of work.

    I was a proof reader for a technical company - very dry work - before this illness. Looking back, I had symptoms for several months which I ignored but when I developed a headache just above my left eye and cramp in my tongue - left side, I went to see my GP. Do I miss working? No. I couldn't have worked - I was far to ill. I missed the routine of working. I missed my friends. I missed a purpose in life. BUT, health is more important than work.

    I miss being physically active though. I would love to join a gentle, very gentle, excerises group but they all seem to be aimed at the young and fit and healthy.

    My mother had degenerative disk disease which both myself and my eldest daughter (aged 42) now have. I also think she had undiagnosed PMR.

    I have found, like most of us here, taper Pred slowly and go with the couple of horrible days/weeks that go with it.

    These illness have no respect for us, but, we must respect them. I have leant that the hard way.

    Take care,

    Sandra

  • In case you don't notice it - I have written a long post about early retirement and its positive side further down.

  • Loss of what I consider to be useful work has been the hardest to take. Fortunately I have my own business and once I came to terms with the illness and was realistic about the future I reorganised my staff promoting someone to replace me. I now have a great title but do little! I miss it hugely and find it hard to replace it with other activities because the tiredness and limitations are the same. However there is no doubt I am physically better doing less and the business is better too. Think I may do my second sign language course later in the year or another course that is not too demanding to keep my brain active.

  • I've just written a long post about retirement in PMR/GCA in response to "Being signed off sick". I'll repeat most of it here if you don't mind and add a bit.

    I can't speak to the question as to how GPs go about signing people off sick - being freelance meant I wasn't going to be signed off work anyway and then we "retired" early and moved abroad. I have that in quotes because we both carried on consultancy as a top-up and to keep our brains in gear - but as of Jan 1st 2016 my husband has given up his (small) business altogether and is a proper Italian/German pensioner, the UK state pension is still to come. Last year he worked for 80 euros in hand, the rest went in Italian taxes and contributions and paying the standard charge for a tax advisor for a small business - doesn't matter how much you earn in it!

    I will, however, speak about working with PMR/GCA and the concept of early retirement when the option is there.

    There are two perceptions: one is that only elderly people develop PMR and GCA (the average age of onset is claimed to be 70!) and the second is that too many doctors believe that once we are taking pred everything is back to normal and so there is no reason not to go to work.

    We are doing our best to explain to doctors that no, pred reduces the pain and stiffness considerably - but actually a 70% improvement in what we have initially still leaves a lot of discomfort and sometimes considerable disability which affects us working, particularly the morning process of getting out of bed and ready for work and, even more so, any commute. There is a version of prednisone that banishes that morning problem - it isn't approved in the UK for PMR and anyway is so expensive that they won't prescribe, it was approved for RA, the directive is not to use it. If you include the working element however it probably does become cost-effective.

    GCA is covered by disability legislation - but even that is limited in application. Oh yes, you can have shorter hours - but we'll still expect you to do the same workload (so we'll win by getting the same work done for less pay, but they don't say that do they?). Not sure about PMR - which often provides a bigger physical obstacle.

    There are also two aspects to working with GCA/PMR: both of them cause fatigue and brain fog which are not relieved much by the pred (apparently some doctors think that means pred isn't working!), but both are managed with pred which has, as potential side effects, the power to cause fatigue and brain fog. So you are in a Catch 22 situation. At higher doses of pred - are you actually mentally able to do your job? I never had above 20mg and I struggled managing cooking dinner never mind carrying out a complex management process at work. I was lucky, I was a freelance translator - work was the next room and I could go to the gym in the morning which allowed me to move fairly well for the rest of the day. I could never have got to an office for 9am - and I know I read some stuff 5 (or more) times before I understood it or was happy I'd done it correctly! Can you really make executive decisions that are balanced and correct? Being on long term pred is enough for some courts to excuse you jury duty - because your emotions/thinking ability may be impaired.

    Part of the current problem stems from changes over the last few years. We all now have to work longer before we can claim state pension - which is taking us further into the age group where GCA/PMR becomes more common. That isn't to say you don't get them much younger - although some doctors will deny that. And you have also to factor in the changes over the last 6 years about benefits and sickness - it is increasingly difficult to get sickness benefits because of the "tests" and interviews they supposedly carry out. If you can breathe unaided - you are fit to work!

    If anyone can afford to retire now - do consider it. My husband took early retirement from the NHS as soon as he thought we were going to be able to manage financially until we got state pension. It meant he lost 5% per year from his work pension for going before 60 and it wasn't that much anyway. Our income has been much lower, particularly since the last financial crisis turned the tap off on my work, but our quality of life has been far enhanced. The costs of living change - no more commuting costs, clothes last longer, food costs fall because you have the time to shop and cook and need fewer convenience foods. Daily shopping provides exercise - and you throw away very very little. I can heartily recommend it! You do find all sorts of things to occupy your mental capacity and fill the time and you will wonder how you ever found time to go to work! The relief from the stress of daily work makes a big difference - GCA and PMR do not mix well with stress, whether it is physical or mental.

    I had less of a problem with loss of companionship - my colleagues/clients had been at the end of a phone call for years anyway. Someone mentioned wanting to do classes but they are all aimed at young people - you would be surprised! Once you no longer are forced to look for options in the evening and at weekends you will find that 9-5 gyms are populated by the retired. Some of them are still able to manage kick-boxing and top level zumba but many of them are looking for the more gentle stuff such as tai chi and Pilates, both of which are good for PMR people, helping posture, balance and stiffness. Pilates should always be practised at YOUR level and a good teacher will always adjust it to suit your limitations. My Iyengha yoga teacher did too - I used a LOT of blocks! Aquaaerobics in a warm pool was also a life-saver in the 5 years I had PMR without pred. I still miss it now - no options that are affordable in these Italian mountains!

    As for "loss of useful work" - there are many things to do with volunteering where you can adjust what and how much you do. At the age of 79 and with heart failure my mother still ran the WRVS coffee bar at the local court - no heavy work obviously but the organising had to be done too. Voluntary visiting of people in hospital/care homes, reading to them, simply being company doesn't require wonderful health, just some commitment. One lady with PMR has therapy dogs - she won an award at Crufts last year.

    And of course the entire PMRGCAUK charities, all 4 of them, Scotland, the Northeast of England, the Northwest of England as well as the National one based in the south are run by volunteers. My contribution of support in the form of writing is done from my computer here in Italy (I don't know whether everyone considers my epistles useful or not) but no physical, real live support group can function without volunteers to do the admin and the charities also need more people to be at the end of helplines and do all the minutiae of running them as well as fundraising. Another wonderful example of volunteers creating and running a charity is Vasculitis UK which you can have a look at on their forum on here.

    If you are still with me - thank you for reading this far!

  • Your advice and support have been invaluable to me since I first joined this site, thank you so very much. I was given a lecture by my daughter four years ago when I first starts this illness and went from a hill walker, frequent long distance traveller and someone who was enjoying a second marriage and retirement immensely to a fat faced, many chinned blob on the sofa, crawling round with sticks and a wheelchair. She told me that just because I could not do those things anymore didn't mean I should give up. DO SOMETHING! I began to learn to make rugs and pictures out of textiles, learning the old NE craft of 'proggy rugging'. When my hands got too bad for this I went to college and got my first maths qualification ever. I also joined weareexplore@gmail.com Newcastle, a lifelong learning organisation run by the Joseph Cowen Centre, originally supported by the Gov. It lost its funding but we all now subscribe. Recently I have started a foundation course for a second degree in Fine Arts with the Open College of the Arts.

    Another old bird, determined to keep going to the end!

  • I assume you are in contact with the NE group in Newcastle?

    The lady with therapy dogs visits young offenders where the dogs "listen" to their reading - so even slightly bouncy ones can probably have a role ;-)

    Is "proggy rugging" the ones done with short strips of material? Having just looked (isn't the internet wonderful!) - yes, my uncle used to both sorts when I was a child. I did hooked wool rugs! Couldn't do them now, my hands hurt if I use them too much.

  • Thank you all for your thoughts about illness and work. I'm amazed by the wealth of expertise and experience on this forum. I hope doctors are listening in and gaining further insight about PMR/GCA.

    I know deep down that this is the time for me to retire from healthcare marketing and communications. It's very stressful, deadline-driven work that requires a sharp mind and attention to detail- attributes I'm not sure I can offer anymore.

    PMRpro, your insight is invaluable! My next move, besides getting some nutritional counseling, is to find a warm pool with aqua aerobics. Also, I love dogs and would be in heaven to someday accompany a therapy dog to visit anyone in need of comfort. I have two Golden Retrievers, but I'm afraid these two would offer too much therapy if you know what I mean. But it's worth exploring further.

    Thank you again for sharing your invaluable experience. Warmest regards, Kitty

  • The lady with therapy dogs visits young offenders where the dogs "listen" to their reading - so even slightly bouncy ones can probably have a role ;-) It isn't just for hospital/hospice/residential homes.

  • The library system where I used to work has a program where children come to read to a therapy dog as a way to help them with their reading.

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