I am new PMR/GCA

I think I started PMR about 10 months ago my GP gave me steroids just for inflammation 30mgms decreasing weekly until I was down to 10 mgms then stop. February this year he came to the conclusion it might be PMR. I saw a Rheumatologist who said I GCA and put me on 60mgms Prednisone and Methotrexate 15mgms once a week. I was to take the 60mgms for 6 weeks then decrease weekly by 10mgms and maintain at 20 mgms for 8 weeks then see him. He maintains that I will be off steroids in 6 months. I have since found this site and I am now very skeptical even if the Methotrexate takes over from Prednisone. I live in North Florida and no one I have spoken to has ever heard of PMR. I have to go to Georgia to see the Rheumatologist. I speak to family and friends in the UK and they either have had it or know people who have it. This site has given me lots of information that I have not been able to find here in the US. I doubt there are any groups here. All your posts are so helpful I get very tired and now I know that is fairly normal,

Thank you.

48 Replies

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  • Hi englishrose417,

    Your story is not that unusual unfortunately. If your GP had been a bit more knowledgeable about PMR and not reduced you so quickly then you may not be in the situation you're in now.

    I have to say your Rheumy is very optimistic if he thinks you're going to be off Pred in 6 months. No-one, not even the cleverest Rheumy can say that for sure. Both PMR and GCA seem to have their own timeline, varying from about 2 years minimum to about 6 years, sometimes longer. My GCA lasted about 5 & half years.

    They are not like many illnesses that can be cured, or have a certain lifespan. There is no cure for either, but the inflammation caused by them can be controlled by Pred. But all the time you have the illness, you need the Pred! Initially you are given a high dose to get control of the inflammation already built up, and then you need to reduce SLOWLY to get to the optimum level your body need every day. That varies person to person, day by day.

    You will get tired, that's a combination of the disease and very often the Pred as well, so you need to learn to pace yourself, build in plenty of rest time during your day, and if you find you have a really good day don't do too much - you'll suffer for it next day!

    Please keep in touch and let us know how you are progressing.

  • Thank you DorsettLady

    As I said I am skeptical about his time line now I add "VERY" Has anyone said how and when this disease appeared. I was an SRN in the East End of London for 30 years (days of Call the Midwife) Never heard of PMR/GCA learnt about Vasculitis but never saw a case. This Rheumatologist said it was thought to affect North Europeans more so women then men. I wonder has research been done on that theory?

    Thank you again

  • Hi again,

    Yes it is recognised as being mainly of Northern European descent (Scandinavia) - Scotland seems to have more sufferers than further south (Blame the Vikings) - plus pockets in US, Canada, Australia, New Zealand - all from emigrants from NE countries I guess. For some reason it's also quite common in Spain and parts of Italy although not other Southern European countries. Doesn't seem to be in Asia or Africa.

    Certainly affects more females than males, and until quite recently always quoted 'over 70s age group' now they are agreeing people much younger are susceptible.

    It's very difficult in the early stages to ascertain what are PMR/GCA symptoms and what are down to normal aging, now that it's recognised that younger people also get it hopefully that will not be in doctors minds in future.

    We old cynics on here maintain there is not enough research done because, a. it usually affects older people, women particularly, and b. because Pred is cheap as chips to manufacture there is little interest in the drugs companies investing in expensive research. Plus it's not like cancer in that it's kills, and it doesn't affect children or the young, so it's not seen as being "headline" status.

    I think it's probably been about for some time, but not recognised as such, many on here have said they think their parents or grandparents may have suffered, but were never diagnosed.

    There's also a theory about environment having an affect, plus it seems that people who have led very busy stressful lives are more susceptible. Stress, whether from an accident, or injury or caring for a loved one seems to be very common amongst people on here.

  • Hello DorsetLady....You are just a one person library full of good info. concerning these illnesses that we all have in common....PMR / GCA ! Thank you for your time well spent. I would really love to know where you found the info on the origins of these diseases? I would like to read more about it . I am 1/2 Southern Italian ( Naples) and my other "ingredients" are Scotch, Irish and English ( from my Moms side) . So I am intrigued. I live in calif...(.USA) born and raised here. I have never met anyone else with PMR nor had I ever heard of this ailment until I was diagnosed by a local Rheumatologist 4 years ago. Unfortunately , I did have an Aunt on my Italian side of the family that passed from an autoimmune disease of Schleroderma in 1995 when she was in her early seventies. So I am extra curious now. Thank you for staying available to us , even though your illness is in remission now. (Thankfully)

    Suzanne

  • Hi Suzanne

    (me too, my mother was very insistent on correct spelling and pronunciation when I was younger!)

    Most of my info is from this forum (PMRpro and HeronNS) are very good at unearthing all sorts of info, as are others who if they find something interesting post it. Plus just browsing the internet myself.

    The northern European link is certainly well documented in lots of papers etc.

    PMRpro lives in Italy, and she has commented that the medical people there seem to be much more switched on than either U.K. or US re these illnesses. So it's fair to assume perhaps it's more common there than other places.

    To me, it makes perfect sense that if it has a Northern European connection, then the amount of people emigrating over the centuries from that region (including U.K.) to places like US, Canada, Australia and New Zealand would take it in their genes.

    Like you, I had never heard of either. GCA or PMR before diagnosis, nor did I know anyone until I found this forum.

    If you look at the PMRGCAuk web site it will give you plenty of links with info, as will typing in GCA or PMR into any search engine.

    There is information out there, probably not as much as we would like, and maybe not as accurate as it could be. It is a Cinderella illness, and I'm not sure those writing the papers etc always know as much as the patients about the nitty gritty day to day effects!

  • Hi DL ...thank you for your always interesting reply. I plan on doing some research myself with the ideas you have suggested.

    Suzanne

  • So interesting DorsetLady - thank you.

    My ancestors came from Germany, Belgium, France and Holland, India but have all been in Africa since the late 1600's and early 1700's.

    I came to the UK just over 2 years ago - did go through loads of stress - immigrating and work related - got really ill in November (and it was not only the 'morning stiffness' I literally couldn't get in and out of bed / chair etc all day long. Painkillers had hardly any effect. Trying to get up the stairs was horrific as was trying to get in and out of the bath or onto and off the loo. I couldn't eat and ran a fever most evenings. I was eventually diagnosed in Feb this year.

    My thoughts are - could there be more to it?

  • Certainly heritage does seem to apply - how far back through the generations you have to go - I don't know!

    Stress, most definitely, if not a factor in itself, most certainly exacerbates the situation.

    We may never know the complete answer, but I suppose like most illnesses there are contributory factors, some we can do something about - some are out of our hands.

    Hope you are feeling better. It's all relative, but you know what I mean.

  • Hi - yes thank you.

    I have learned that stress, sugar and other carbs are not my friend.

    I have tapered from 20mg (beginning Feb) to 12mg currently. I still struggle to recognise the difference between the PMR symptoms coming back and steroid withdrawal symptoms.

  • Yes that's true - perhaps if you tried a slower plan to get from one dose to the next it might help. That way the body doesn't realise what you're doing.

    I found early on that dropping "overnight" I felt really rotten for a few days after the drop - fluey, irritable, achy- so I devised following - (others are available)

    1st week - Sun & Thurs new dose

    2nd week - Sun, Tues & Thurs new dose

    3rd week - Sun, Tues, Wed, Thurs new dose

    4th week - Sun, Tues, Wed, Thurs & Sat new dose

    5th week - all week new dose

  • Thank you for that. I might try that.

  • Part of them being more switched on here in particular is that they often trained in Germany (bilingual region, German/Italian) but the Italian link also includes the historical fact that Sweden was allied with Bonaparte and soldiers got all over the place in Europe. Before that they had been heavily involved in the 30 Years War, especially in Bavaria - and Bavaria was closely linked with this region with settlements here since the 1400s so there is a great interchange of population historically.

    "Could there be more" to what?

  • Thanks PMRPro - like could it be caused by something like Lyme is - through ticks, flees etc. Bug I see what you say about the movement of people.

  • It could - but there is no real evidence that there is a viral or bacterial common cause. If there were, you would expect more cases within a family or a higher incidence of spouses developing it and at a similar time. And certainly bigger clusters than are usually seen. All the usual suspects have been suggested - and no evidence found or if evidence has been claimed, it hasn't been replicated. It could be any or all - but in the end system overload sends the immune system into overdrive and it crashes.

  • Thanks - yes - see your point.

  • Ps.

    This might be of interest.

    This is what I send to newcomers, hope it will help you understand your illness a little better.

    Apologies if I'm repeating what you already know.

    It's what I've gleaned from my own (GCA) and others experiences with GCA & PMR over the last 6 years. I have no medical training or expertise, except from a patients point of view.

    There's a lot of information to digest, so you may need to read it through a couple of times, save it, print it, whatever, and take your time to read other sites etc. Too much to take in all at once.

    PMR or GCA are not like most illnesses -take a course of tablets for a few weeks or months and they're cured. There is no cure as such, but the inflammation caused by the underlying illness can be controlled.

    Lots of us are never sure what caused the underlying conditions of GCA and/or PMR (physical or mental stress are favourites though) but having them means that your immune system is not working correctly and allows certain cells within your blood vessels to grow too much - hence the Giant Cell in GCA. That causes inflammation in your blood vessel walls and means that the blood, energy and oxygen does not circulate around your body as well as it should, so you get aches, pains, stiffness, weakened muscles and fatigue.

    In PMR the most widely affected blood vessels are those to your main muscle groups - shoulders, hips, knees. In GCA it usually affects the shoulders plus those blood vessels that feed your neck, head, and sometimes the Aorta. If only affecting your head it's sometimes referred to as Temporal Arteritis (TA).Serious sight problems can arise if the ophthalmic artery is affected and stops blood getting to the optic nerve, if that's damaged then partial, or all sight can be lost. If your Aorta is affected it can lead to strokes, aneurysm etc.

    The only drug that controls that inflammation is Prednisolone (Corticosteroids), as I said it does not cure the underlying problem of GCA/PMR, but it keeps the resultant inflammation under control. Pred comes in varying dosages, and can be either uncoated (which can be cut if necessary) or coated/enteric (which cannot). Unfortunately it does have some rather nasty side effects - sleeplessness, weight gain, depression, it can also increase the possibility of diabetes or high blood pressure, but not everybody gets all the side effects, and they can all be managed.

    Usually PMR and GCA go into remission, but that can take a number of years, around 4 seems to be the average, sometimes less, occasionally a lot longer. You have to tell yourself this is a long term illness, and accept that - it does you little good to say at the beginning I'm going to be off Pred in 3months, 6 months or even a year. That just puts you under pressure, and that's something you don't need!

    The initial high dose (PMR: 15-20mg, GCA: 40-80mg) takes control of the inflamed cells, and then you have to taper slowly enough to keep the inflammation under control, if you do it too quickly you may go below the level of Pred that works for you. It's a balancing act, you obviously don't want to take too much Pred, but you need to ensure you are taking enough.

    The initial high dose (PMR: 15-20mg, GCA: 40-80mg) takes control of the inflamed cells, and then you have to taper slowly enough to keep the inflammation under control, if you do it too quickly you may go below the level of Pred that works for you. It's a balancing act, you obviously don't want to take too much Pred, but you need to ensure you are taking enough.

    When you collect your fist prescription you should also get a Blue Steroid Card from the pharmacy. Once you've been on Pred for 3 weeks your own adrenal glands stop working, so you mustn't suddenly stop the steroids - anybody in the medical profession should be aware of this. Some people wear a medical ID bracelet just in case of emergencies. Look on line, or surgery may have leaflet.

    The usual plan is to reduce every month but, and it's a big but, what looks achievable on paper, in real life it's very often not!

    As I said most people have started at a bigger dose, and therefore the inflammation at that level is well under control, the art then is to reduce SLOWLY provided you have NO return of symptoms. Some doctors don't seem to get the 'slowly' bit! If you reduce too quickly, whether that time-wise or by dose you are likely to go past the level of Pred that can control your inflammation.

    If you remember the mantra-do not reduce more than 10% of your existing dose - it will stand you in good stead. So at 50mg that would be 5mg, at 20mg -2mg or 2.5mg (tablet size). Obviously once you get below 10mg, that will be part of a 1mg tablet, so most people find that cutting them in half (so long as they are uncoated) gives approx 0.5mg.

    Some people have problems reducing from existing dose to a lower one, and that's because your body needs to acclimatise to the new lower dose. So for a few days you may suffer steroid withdrawal (feel generally unwell, irritable etc) but it should go after about 3 or 4 days. One way of stopping any withdrawal symptoms is to taper over a few weeks, rather than an "overnight" drop. Say introducing the lower dose on 2 days during first week (although not consecutive days), maybe 3 days next week, 5 days next week, and then 7 days final week. There are many different plans, quite a few published, or devise your own - whatever suits YOU best. Just ask!

    Recommended time to take Pred is early morning, with or after food. However the cytokines that trigger the inflammation are produced around 4am; some people take their Pred around 2am so that by the time it is fully in their system (uncoated about an hour or two; coated about 3-4 hours) it's ready to fight the inflammation.

    Try and read as much as you can about your illness, the uk charity PMRGCAuk.co.uk has lots of information. You can find a link if you go to the home page of this site and scroll down, it's on the right hand side.

    There is a book by Kate Gilbert - A survivors guide to GCA and PMR on Amazon - either hard or e copy, just type in GCA or PMR in Books. The North East branch of PMRGCA also has lots of info, link from main charity webpage. You can also get information on the treatment suggested from British Society of Rheumatology (BSR) site, or patient.uk site has information leaflets aimed at patients and doctors. A little while spent searching the internet will give you plenty of reading.

    Look up 'Spoons Theory on web, (Butyoudontlooksick.com) it's not about PMR or GCA but another auto immune disease, and it will give you an insight into how to adjust your lifestyle.

    You do have to do your bit as well though, just because you feel better when you start the Pred, you are not back to normal, you still have the underlying disease there. You have to learn to pace yourself, that means resting. Your muscles are not as resilient as before (both from GCA/PMR and the Pred) so when you exercise - do gentle - Pilates, yoga, Tai Chi all good - no strenuous workouts or marathons! You need to let your muscle recover, and that now takes longer.

    Take more time planning, don't try and do half a dozen jobs all at once, or all on one day! Take any offers of help, even though it may go against the grain at first. Life can return to NEARLY normal, just in a slight slower lane maybe.

    As I said at the beginning a lot of information to take in, but hopefully you can come back to it as and when you need to.

  • Thank you, so very informative and you must have spent a lot of time gathering it all. Again a big thank you

  • Great info as usual - thanks.

  • Much of the earlier research was done on populations in the USA, in particular in Olsted county in Minnesota - a region with a lot of Scandinavian heritage. The further north you go the higher the incidence of PMR - but also the higher the incidence of vit D depletion, which can cause very similar symptoms.

    PMR was first described in 1888 by Bruce - a Scottish doctor and he called it senile rheumatic gout. It was renamed polymyalgia rheumatica in 1957.

    clevelandclinicmeded.com/me...

  • As a matter of interest, how do you *know * your GCA lasted 5.5 years? Do you mean that it took you that time to reduce your Pred. to zero without having any symptoms? Just curious.

  • Hi again,

    Bit long-winded, apologies.

    From first symptoms (Sept 2010) to diagnosis (April 2012) took 18 months.

    Started at 80mg and reduced fairly easily, compared to lots on here, once I got down to 15mg (Aug 2013) which also coincided with my husband death decided to use slow plan to taper.

    Reduced only 1mg about every 5-6 weeks until I got to 7mg (Jul 2014), then by 0.5mg same timescale. Quite difficult dropping down from 6mg to 3mg (think lazy adrenal glands)

    Once I got to 1.5mg (March 2016) I suddenly felt "different" - can't explain in medical terms, but much more approaching the old "me". I think I just knew things had changed, but maybe didn't want to say it out loud in case I was wrong.

    From then on I still did the slow taper, staying at each dose a bit longer for a couple of times - once going on holiday to Spain, and again when after a few days I just didn't feel right - not GCA pains, but just not good.

    So that's how I say 5.5years with GCA plus extra 6 months (Sept 2016) to get off Pred completely.

    Probably could have stopped the Pred slightly quicker, but didn't want to chance it. Tiny doses, no side effects, no problems!

    Touch wood, 9 months on still feeling good!

  • It is frustrating feeling that no one really understands your ailment! I think you will be surprised how many people in the US are on this site, however, and the Patient forum, mostly because there's nothing similar in the US and there are a lot of Americans seeking support and advice. But, your experience notwithstanding, there's lots of up to date info about PMR and GCA available to US doctors if they choose to pay attention!

    emedicine.medscape.com/arti...

    One of the items I just looked at, from 2000, says that PMR is relatively common in the US, afflicting about .5% of people over 50. Temporal arteritis (GCA) more rare, of course.

  • I honestly think that US rheumatologists think PMR is beneath them! Though to be fair I do know a few very good ones - but the US is a very large country!

    There was an attempt to get a US site going - but it does need a critical mass of people and it helps to have people with the background knowledge. There is another forum where there are a lot of US contributors. This is a link to our reading list there

    patient.info/forums/discuss...

    and this takes you to the "front page"

    patient.info/forums/discuss...

  • I always hate to have this thought, but.... PMR is a disease of elderly women and elderly women do not count in the larger society. If you are male, if you are female of childbearing age, then you count. I'm sure if PMR were a disease of middle aged men the researchers would be falling over each other to find a safe treatment or even a cure!

  • Hi HeronNS....you are SO right - on with your comments about "women of a certain age " with ' certain' diseases being disregarded and sometimes... just plain discarded !! Thank you for those very relevant comments concerning our female PMR /GCA journey. ( sorry fellas)

    Suzanne

  • I guess I should say that PMR is "perceived" as a disease of elderly women. Because, of course, the 1/4 to 1/3 or so of patients who are male also are victims of this neglect.

    However:

    academic.oup.com/rheumatolo...

    I wonder if the difference in recovery is purely a result of gender, or whether there's a difference in the patient's perception of how they are treated, whether they are taken seriously and so forth?

  • Hi Heron

    This is certainly and sadly true !! Research about the history of medicine and focus on any disease you choose reveals these sex/age biases very quickly. Also it is now well established that women were often not included in drug trials for most diseases as the 'normal' subjects were regarded as male and women 'atypical'. Sounds ridiculous but if interested watch for example Alyson McGregor's TED talk on this subject - men's and women's physiology is NOT 'identical' and the assumption they are has not been good for women at all (major variations in heart attack 'symptoms' are a classic example).

    It sure would be revealing to see more work done on sex 'differences' in causes, trajectories & experiences of PMR/GCA although we know about some obvious aspects already such as greater incidence in women and I think it has with GCA (unsure about PMR) been suggested shorter duration in men ?

    Anyway STILL not unusual in almost any sphere of life for women - especially 'older' ones to be regarded as of less 'value' ...

    Best

    Rimmy

  • It's taken you this long to work that one out? I've been saying it for the last 8 years...

    It is as much that it has been perceived as a disease of the elderly - over 60. Until very recently in most of the west women retired at 60 and many didn't work anyway, especially at that age, so even if they developed PMR younger it didn't affect the workplace as much. It was pretty much accepted for manual workers that it was a part of ageing and heavy work - they'd worn out.

    But autoimmune disease in general is far more common in women and that is slowly being realised.

  • Haha, it just took me this long to state these thoughts on this forum!

  • I wouldn't have put you down to being so reticent ;-)

  • Maybe the subject just hasn't come up? Although I think it has, maybe in a different context.

    Watched program yesterday evening which completely demolished the cholesterol/heart attack myth! Fascinating. And to think there were actually people in the US saying that statins should be put into the water supply.

  • Rats - "not allowed in your geographic region..."

  • Annoying isn't it? Here is more info about the film in case you can find another way to see it. Basically it says that fear of cholesterol is unfounded. Heart problems are not correlated with cholesterol, but with smoking and lack of exercise (Framingham study). The Vioxx scandal opened people's eyes to the possibility that statins were also questionable. I doubt if there's anything here you do not already know, but I did find the program very entertaining.

    andanafilms.com/catalogueFi...

  • It's an ARTE film - I think I may have seen it...

  • Thank you for the info there really is very little available in the US.

  • Well EnglishRose, I have to add that now you are not the only one in North Florida ..... and thanks to you, neither am I. I live in Jacksonville area. If you're near enough, perhaps we can meet.

  • cdenoncourt Hello

    In US terms just down the road in Tallahassee, the capital of Florida and we don't have a Rheumatologist. I have to go to Thomasville Ga. We could meet half way, your side of I-75 Live Oak I think.

  • Got it wrong I meant Lake City

  • Sending you a private message through this forum, in a few minutes.

  • Hi I am in Canada and have found similar optimism between my primary care nurse practitioner and pain specialist. They both said within a year I am at 13 months post diagnosis and on my way to 5mg (2nd try) using the DSNS method outlined here, had real trouble getting past 7 until I switched to that method and just simply told my Dr that is what I was doing. Don't get me wrong she us wonderful but learning as we go as she has only seen 3 other cases. Good luck and just and fyi, this forum is amazing ton of useful info. Social media groups not so much.

  • I wish I knew where they get this idea it is gone in a year...

  • I had a flare when I went down to 20mgms Pred. My GP was on vacation so I saw the Nurse Practitioner who was well informed more so then the Doctor she and I will work together on reducing the Pred. and just see the Rheumatologist as necessary. Much of the comment of it being a disease of the older females and not so interesting to the medical community seems to ring true.

  • I like in California and it took 3 months of going to ortho doctors before I was diagnosed with PMR luckily enough we have doctors here that know what it is. I started on 20mg and am down to 8mg but am stuck at that number. I love this site too there is a wealth of knowledge for people who have been through this or are going through this. Good luck and sorry you have to go so far to find a doctor.

  • I also live in California. Where are you located?

    TJ

  • Sorry I am in Florida

  • I live in Torrance just outside of Los Angeles where are you

  • I am in the San Jose area.

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