PMRGCAuk
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PMR

PMR

Hi Everyone , It's been really helpful to read other people's views on PMR ,I'm hopefully getting a bit more understanding of my condition . I was absolutely gutted to find that I've got PMR ( or that's what my doctor thinks ) at the age of 56 .Up until 4 months ago I was enjoying my running , hill walking , kayaking ,biking ,and was then struck down by this !!!

Put on 15 mg of pred which stopped the pain within 2days and I was fine , doctor has advised reduction in 5 mg steps over the past 3 months so I'm now on 5 mg and feel ok .

I have gained a lot weight and just can't seem to do any activities anymore without getting totally tired out , this doesn't help when you still have to work ! Does this thing ever go away or will it be with me forever?

Is it worth paying to see rhumatologist just to confirm the doctors diagnosis ,as he doesn't seem to know much about this condition ?

Thanks once again everyone , will be trawling through this site to find out as much as I can .

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oldestnewest

Greetings Mac

Thanks for your post and introduction.

Briefly, all can say is 'Watch and wait' - you'll get an avalanche of reliable and helpful replies from the trusted experts here very soon.

Your situation sounds quite typical, albeit having 'got' PMR at a relatively young age (as did I, and also as an 'Action Man').

Yes, often, 'deathly' Fatigue goes with PMR (unfortunately), as with many chronic Auto-Immune / other serious illnesses. But you'll learn how to cope with this - just be patient and soak-up the very good advice from the experts here around pacing yourself in the meantime.

PMR is in fact a quite serious (although not life-threatening) illness and a long-haul journey to recover from - but often there is light at the end of the tunnel. Estimated 'Best Case' outcome approx. 2 years. Fingers crossed....

It sounds like your GP is on the case - but an opinion from a Rheumatologist might give you some peace of mind too.

Hope this helps, but feel free to ask any questions here - however seemingly trivial.

In the meantime, try to keep smiling on the 'Journey' of PMR. You're in very good (and expert) company on this forum, as I can testify after 2 years into the Journey - and hopefully at the end of it.

Best wishes

MB :-)

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Thanks for those reassuring words .

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Hi 66Mac and welcome to the club you never wanted to join. Are you sure you feel OK? Those are big drops in Pred. dose over a very short period. The received wisdom on here is to reduce in tiny stages and never by more than 10% of your dose. The fatigue is a very common, troublesome, symptom of PMR. The beauty of the Dead Slow Nearly Stop method of reduction is that it minimises symptom return. Prednisalone only and importantly deals with the inflammation caused by PMR, the disease is still there bubbling away underneath. Unchecked the inflammation can cause damage to your body and worst case scenario Giant Cell Arteritis can develop.

PMR seems to hang around for a few years, some doctors say 2 is the average but people on this forum throw some doubt on that.

I feel for you having been, until recently, an active sporty person. This disease must be an awful blow. But you must look after yourself and pace your activities and don't be in too much of a hurry to get off Pred it's all we realistically have at present to stop seizing up and hobbling about.

Having said all this, men do seem to do better with PMR, maybe you are OK. This is a good forum to bring your concerns to, I think you'll find a number of former athletes too.

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Well said Jane, I totally agree. :-)

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Hi Mac

I was diagnosed at 53 years of age in January. I agree that it really is a blow! I did pilates/aerobics every day before this. Some days now I can barely walk for 10 minutes without feeling like I have been hit by a truck! I paid £175 for a second opinion with a rheumatolgist. She has recommended more tests to rule our other things, but my symptoms seem like classic PMR to me.

A reduction from 15mg to 5mg in 3 months seems a bit steep, as others have said, but if it is working for you then that's great. Might be worth a 2nd opinion for peace of mind.

Attitude is everything- yes, PMR is a pain in so many ways, but there are a lot of worse things out there!

Good luck on the rest of your PMR journey.

Pam

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Hello Mac! I have had PMR for 21 months now...diagnosed in Jan 2016. Miraculous result on pain within 8 hours. My initial reduction was too fast ( not as fast as yours) . I was advised 20mg...12.5... 10... 9mg I was always watching for the neck, shoulder arm hip and thigh pain returning as an indicator that my dose was too low, so kept on with the reduction as advised by both GP and rheumatologist. Pain did not return apart from slight neck stiffness. But my fatigue was awful, as were night sweats. Some people see night sweats as a side effect of prednisolone, but mine seem to occur when my prednisone dose is not high enough, so I see sweats as a sight that PMR is not being dealt with by a high enough dose.

Maybe your fatigue is for similar reasons to mine...not a high enough dose of Pred? But at 5 mg your adrenals will need to wake up and produce their own cortisone. That fatigue I believe is crushing.

However you will be very lucky not to have tiredness as one of the main symptoms of PMR. The answer is pacing, making choices over what you choose to do, as life is unfortunately not the same with this disease, and you will not be able to carry on as normal...yet!

I have had to stop playing a lot of sport which had been a big part of my life. I do gym once a week and tennis twice a week if I feel ok...never for as long as I used to, always watching for fatigue backlash, especially the day after exercise.

I went from full time to part time work this time last year, and have decided reluctantly to retire toward the end of next month, but I am older than you 64)

Not what you want to hear I am sure. My first thought would be to consider that you might need a higher dose of pred in case your fatigue is due to adrenal insufficiency.

I am sure the real 'gurus' will be along soon.

All the best

Mary

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Yep Mary, that type of fatigue is definitely crushing - makes you feel totally flat.... ;-) :-)

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Yes I agree that your doctor has reduced your medication to quickly as you are still suffering with the fatigue I was on 30 mgs to start and have taken 3 - 4 years to reduce down to a 5mgs maintenance dose slowly and with the odd flare up and having to up the dose 1or 2 mgs then down again slowly ! If you have still got fatigue then your PMR is not under control has you doctor checked your levels recently ? You have to reduce over months and years and should no have fatigue or any other symptoms at all if you do everything properly. You have to be in control as you are the only one that knows how you are feeling it's a long journey but you can do it! I am on a 5mg maintenance dose permanently now and walk 20000 steps per day climbed Snowdon and have reduced my weight right down to as slim as I was in my 20's and I am 63 and have no pain or fatigue but have have regular blood levels taken ! You will get there but listen to all the advice on here as well as we are all on that journey too and do not be afraid to tell or speak up for yourself to your GP .Good luck we are all here with you x

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Hi mac,

Like many other would say your tapers are quick, however men do seem to cope with PMR better, but your fatigue would indicate that you have gone beyond the level of Pred you actually need.

As you are working have you got the OH and union (if you belong) on board to see if you can adjust your work patterns etc.

Following light(!) reading may help -

This is what I send to newcomers, hope it will help you understand your illness a little better, and enable you to control it rather than the other way round.

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.

Please come along with any more questions, or just to talk. There's a lot to learn, but there's lots of people on here willing to help - mainly from UK, but also many from around the world, so you should get a response anytime.

Take care.

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Thanks DorsetLady for that ,it looks like I will have to show my doctor the information I have read so far, it just seems he's hell bent on getting me off the pred.

He didn't actually diagnose pmr , he said it was highly unlikely at my age ! it was one of his colleagues and now I have a blood test every month and a consultation where he shows me Graphs and stuff , which seem to show whatever level it is falling month on month , I assume these are the markers that I have read about. Do these go up when the inflammation gets greater ?

I can see that I am going to have question some of his advise and be a bit more forward than just accepting his judgement !

Thanks again

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Hi 66Mac, the blood tests normally include CRP and ESR which measure the inflammation in the body, the pred should make them go down, but they can go up if you reduce too much or too fast for example. They are a good monitor of how things are, but it is really how you feel that is important. It is also a good idea to have checks such as full blood test, U & E, thyroid, vit D, glucose and probably a few others. You do not need these so often though. I always ask for a printout of my blood test results so I can see what is happening. I must admit I get a cheap thrill when I am able to see the results each time, nerd that I am.

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Hi,

Yes if the blood tests levels have increased it can show the inflammation is more active. But unfortunately the ESR, in particular, also rises when there are other anomalies like colds, flu etc - and in my case, stress. That's why we always say symptoms are the key, and the blood markers are then used as a confirmation tool.

On higher doses I reduced monthly (agreed with GP) but only if I had no symptoms and a "good" ESR test. On lower doses I just went by my symptoms and a blood test about every 3 months or so and virtually self medicating with occasional visits to GP.

Mind you I did have GCA with complications missed by original GP so she was very hands on (guilty conscience maybe?), later I changed surgeries with GP with different approach.

But as any good GP should recognise you know your own body best, so you should make the decisions on reducing etc

Take his advice, but you decide.

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"he said it was highly unlikely at my age" - well, as you've seen, definitely NOT the case!

While you are taking enough pred your markers should fall and remain low. They are a measure of proteins made by the liver in response to the presence of inflammation in the body - so will rise in response to infections as well. ESR is particularly non-specific, it rises in pregnancy too (not that that would be of interest to you). So as long as you are taking enough pred to clear out each morning's new batch of inflammation (the pro-inflammatory substances are shed in the body at about 4.30am) the markers should remain stable. If the activity of the disease process increases there may be more inflammation than your current dose of pred can deal with - the markers will rise. Or if you reduce the dose to below the amount required at present - the same will happen.

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I'd say it was a bit of a waste of time seeing a rheumy having got this far if you feel fine at 5mg. The reduction was a tad fast - obviously your GP didn't bother to look up any guidelines! I think all of them say 1mg at a time below 10mg but if you have got to 5mg and still feel as well as you did at 15mg that's OK.

You will get back to where you were - but you can't do things at the former level immediately. You have to re-start training - and that means with a very short/gentle starting session. If you start with say 5mins at a moderate level and are OK afterwards you can add a few minutes each time. If not, recover and then try a bit less. Always err on the low side. It is best at first to just exercise on alternate days - then you will see if you have survived what you did.

All the pred does is manage the inflammation caused by the underlying autoimmune disorders that produces the symptoms we call PMR. At higher doses the pred may overcome the fatigue of autoimmune disease - but not always. This link will take you to a useful post with a load of pacing links - how to live with a chronic illness:

healthunlocked.com/pmrgcauk...

John Robson was very fit when he was put in a wheelchair by PMR - he is back to running and climbing mountains:

pmr-gca-northeast.org.uk/ou...

and his story is here pmr-gca-northeast.org.uk/st...

He started with hydrotherapy - yes, that low level!

You can help with the weight problem by cutting carbs drastically - pred changes how your body processes carbs, cut them and the problems are reduced. You can even lose weight by being really strict.

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Thanks PMR pro , just read the article on John and for the first time since November last year , I actually feel happy 😊 and not worrying about what may happen .Just hope I can run as good times in a couple of years .

Thank you for sharing the article ,I can see I've got loads of reading to do!!!

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Your PMR may well be under control and perhaps you will even go into remission soon. But if you are anything like me you will now have to deal with the lazy adrenal glands. For that reason alone you must not reduce too quickly. You have to let the fatigue run its course, let the adrenals wake up and begin to take over from the pred again. Unfortunately that may take months. But at a low dose, and probably a slowly but steadily decreasing dose, you shouldn't have any significant side effects, beyond the inevitable fatigue. Be kind to yourself. Eventually days when you feel more like your old self will come along and become more frequent. I recommend you follow the dead slow nearly stop plan, even if PMR is now, or soon will be, out of the picture.

healthunlocked.com/pmrgcauk...

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Hello Mac

Unfortunately yours is a typical PMR tale.

The speed at which it hit you and took you out of your normal lifestyle. your attempts at keeping your lifestyle and being thrown sideways by the disease.

But the main "proof" of PMR would be how you felt 12 to 24 hours after taking your first mouthful of Pred! Were you still in pain or did you feel you could conquer Everest ( so to speak)! The former would most likely signify that it may not be PMR but the latter is virtual proof that you have PMR.

It never goes but you can go into remission anything from 2 to many years on. Your doc will advise you to get off the steroids as quickly as possible. Speed is your enemy here. The only way to get off the steroids is to take it slowly. Very slowly.

There are many threads here to tell you how to achieve this reduction and plenty more explaining PMR and it's ramifications on your life.

I really hope it isn't PMR but the test is as above. Good luck

🌺🌹

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I can help with your weight problem.

I did The 8 Week Blood Sugar Diet. I bookform at supermarkets andcAmazon it is about £4.00. No other fees.

I is predominantly for type 2 diabetics butvworks for all weight loss needs.

I was Steroid induced Diabetic, Hypothyroid, fat, no chance of losing an ounce! I lost 2 stone! or 28 lbs! or 12.7'kgs. I am in diabetic remission and not taking any diabetic medication.

It can be done.

Also online!

😜

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Thanks for that PMRand RA , I will have to try that out , as for your first reply within about 6 hours of taking the magic pills , the previous 3 months of pain and discomfort I had been experiencing just disappeared , I even went to the pub to celebrate !!!!!! Felt a totally new person.

Just a bit worried now that the doctor is wanting me to reduce the pred so quickly , now I've read a lot more and have a general knowledge of PMR , I am going to mention it at my next appointment in three weeks .

Thanks again

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hi 66 Mac:

I completely understand where you are coming from. I am 55 and was diagnosed with PMR in September of 2017. It does feel like life as you knew it comes to a complete halt. I am a former kickboxer, martial artist and loved a physical challenge.

I did go see a rheumatologist, he was able to give me more insight on PMR and the best part is that he said this would go away! Well I was ecstatic to say the least. I am starting to be able to do more as time goes on and the inflammation calms down.

I am looking forward to getting back to my formally active life with a little modification.

Keep your spirits up and I think it is worth the rheumatologist visit. The people on this forum are great! Good Luck and God speed.

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