PMRGCAuk
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Do I need to treat PMR?

Hi I'm a newbee looking for knowledge. My GP thinks I have PMR and is asking me to take steroids for a trial period to rule it in or out of diagnosis. I have had severe pains in my neck and shoulders for four years following whiplash injuries. Last october I woke up with severe leg and knee pains and exhaustion. Blood tests showed I was moving towards Hypothyroidism. Two months later I was hypo diagnosed and put on levothyroxine. However pains stopped in shoulders but continued in legs and knees but not as severe and across my hands, occasionally toes, ankles , arms, ribs, and asthma type breathing on the odd day or so. Latest blood test shows increased CRP levels and low neutrophils. I am seeing a thyroid specialist in august privately but i am wondering if I really do have PMR and if so what type of specialist I should be seeing? Obviously something is attacking my thyroid. Are there any good books to read to educate myself. I am frightened of side effects of steroids - is it really dangerous to not treat PMR and to just leave well alone. I am able to function reasonably ok at the moment and I am hoping it will just improve - though I realise I am probably in denial of how serious this is - shall I get treatment asap or see how it develops?

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hi

I have hypothyroidism too and similar pain and problems. if you have a gp that thinks it PMR then to be honest a trial of steroids to see if you get relief is the only way to treat PMR . there will be lots of people who will explain better than I can. But at the end of the day if you take steroids for a couple of weeks and get some relief and dx then at least you are treating the inflammation in your body with the only thing that works..untreated PMR can affect your heart and will have more impact than hypothyroidism on everyday life in long run. PMR is an autoimmune disease that needs treating just like hypothyroidism.

Nobody who uses this group wants to be on steroids and having been in them for a year I can say side effects are doable....hamster cheeks are cute and go after so I am told. Well worth diminished pain. like thyroid treatment it does take care to find right dosage to control symptoms and dampen inflammation. hope this helps. as I said there are others on this group have much more knowledge and experience than me.

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Hi mmer8625,

Can understand why you are worried about side effects of Pred, but they are no worse than many other medication, and not everybody gets all, or even some of them. If they do, they are all treatable, and even the hamster cheeks go in time. Pred gets a bad press, but IF you have PMR it's the only drug that will help.

As Poopadoop says a short course of Pred will tell you if you have PMR, if it works (within days usually, sometimes hours) you have it, if it doesn't work then you probably don't, so back to the drawing board.

It can be serious not to treat PMR, although I'm sure in the past this has happened when aches and pains were put down to old age. Even today with all the tests it sometimes doesn't get diagnosed early on and people can end up bedridden until it is. Another more serious fact is that left untreated it can morph into GCA which is a much more serious and dangerous beast - leading to possible coronary problems and/or blindness - depends what arteries it affects.

For the sake of a few weeks on Pred, is it worth the risk. If you do have it, then a Rheumatologist is the expert, but many with PMR are managed by their GP - especially in UK.

Good luck, and please let us know the outcome.

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Pred doesn't "treat" the illness - it manages the symptoms of the underlying autoimmune disorder that causes it to allow a better quality of life. It combats the inflammation that is caused by the immune system not recognising your body as "self" and which causes swelling (not always apparent) which results in stiffness and pain.

If you haven't had it long it may appear liveable with but as the inflammation mounts it can get far worse and some people even end up so disabled they are confined to bed or a wheelchair. It doesn't always - I had it for 5 years without any treatment and I managed to function but it wasn't much fun, I was always in pain. I found ways to get round it but it wasn't until I had a really bad flare on top that I researched and found out what it was - my GP was totally flummoxed as my blood markers (ESR and CRP) have never been raised, something that happens in about 20% of patients (many doctors don't know that). When I then eventually was given pred it was an utter miracle in 6 hours - and I realised just how my life had been affected by it. I couldn't walk more than a short distance, I crawled up stairs on hands and knees or hauling myself up one step at a time by the handrail - at the top I was exhausted and my arms hurt all the time. And I stomped down one step at a time like a toddler. If I couldn't drive somewhere and park close by - I couldn't go. I couldn't go out with friends - not that I particularly wanted to, I was in so much pain I was depressed and bad tempered. I could barely get out of bed or off the toilet on my own, getting dressed was a major process by which time I was exhausted. I couldn't blow dry my hair, I couldn't have a bath, I couldn't get out again. Within 6 hours of taking my first 15mg of pred I could move - I still had some pain from the bursitis and tendonitis but that also went after a few months.

This is a link to another forum and the third pinned post is our reading list.

patient.info/forums/discuss...

It gives links to the charity websites where you will find a lot of reliable information in one place. There are newsletters on the NE of England site which have articles aimed at PMR and GCA patients, they also have a booklet, free for members and for a small charge if you don't want to join, and articles on the site from other patients, many of who are now recovered.

Because unlike many autoimmune disorders, PMR does usually burn out and go into remission - but it takes anything from 2 to 6 years for 75% of patients. A few of us take longer - there are a few on the forums into med-teens of years, I'm one. If it lasted 2 years as many doctors claim then "managing" might be fair enough. But you don't know in advance which you would be, there is no way of telling, and believe me, constant pain is wearing and dispiriting when no end is in sight. And the unmanaged inflammation in your body puts you at a higher risk of cardiovascular diseases and even some cancers - PMR itself doesn't kill, but some of the long term effects can.

If you have one autoimmune disorder then you are at a greater risk of developing another than someone who doesn't already have one. Thyroid problems are one of the things that should be ruled out before making a PMR diagnosis. It is possible your thyroid problems is contributing to the PMR symptoms - but the CRP is rarely raised in thyroid problems except subacute thyroiditis. If that is your diagnosis then it COULD account for the raised CRP. That is something to discuss with the endocrinologist.

Many people are scared of pred - it has a very bad name that it doesn't deserve. I've been on it for 8 years, I am otherwise healthy and pred has caused no long term side effects as far as we can tell. I gained weight with unmanaged PMR, I was immobile - immobility is a major risk factor for osteoporosis, but in fact I have lost weight on pred by a bit of hard work and my bone density has barely changed while I have been on pred, taking only calcium and vit D supplements. There are 82 listed pred side effects. No-one gets them all and many get almost none. And when you know how - most of them can be managed very well. Pred has been used for 60-odd years, there isn't a lot they don't know about it - which is more than be said for many new drugs - and used properly and carefully it can give you your life back.

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Done - I did wonder if that had happened when I couldn't find one I'd had a notification for! On the other forum I use when a comment is deleted so are the replies and to be honest - I wouldn't have known where to find them! Thank you!!!!

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No worries.

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😀

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Bucky,are you okay?

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Exercise makes a huge difference, doesn't it?

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Hi MMER8265

With symptoms suddenly escalating over a two week period, resulting in a previously able bodied, drug free, active 58 year old individual being reliant on others to assist with showering, getting into bed, sitting, standing etc fear drove me to see a private Rheumatologist. I couldn't wait any longer for NHS appoinment as swelling in the neck was last straw on the 'scare factor' chart for me!

Rheumatologist thought it was PMR but wanted me to try the steroid test (as your GP does) to confirm the diagnosis. Within a day of taking 15mgs of predisolone, whilst I had this thing called PMR, the steroids had given me 80% of my life back within 24hours. Only wish I had seen Rhemy sooner as I could have perhaps 'nipped' things in the bud.

PMR is a life changing disease certainly, for the period that it presents, but it can be managed through steroid treatment. If you try the steroids and the miracle doesn't happen at least you know it isn't PMR and you and your doc can focus your attention elsewhere to further pursue diagnosis underlying your symptoms.

I would accept the offer if I were you, with a review appointment with doc within a week a two. You should have some idea of the impact of pred on your symptoms within this time frame and therefore will have a more accurate idea of what is occurring to help with any subsequent decision making.

Good Luck.

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Don't regret the delay - you can't nip it in the bud, you'd have had less time immobile and in pain but it might not have had such a dramatic effect and been less convincing!

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Seriously Bucky2 this is a friendly, wonderful forum that has given the majority of us here brilliant advice and support, we all take it or leave it at our own risk, we are not stupid. Unfortunately, especially here in the UK we are very behind in certain areas of the country with PMR/GCA (including Rheumatologists of whom most don't all specialise in it!) and so the input from those who have lived with the disease for many years and have come through the other side on here is invaluable. Please stop being rude, sarcastic and bullish or leave us to it, as the old saying goes if you can't say something nice, don't say it at all. Or SHOUT it for that matter. Wishing you well

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Hi Trixechamp. Since Bucky2 offensive comments have been deleted is it worth deleting your reply above so that mmer8265, as a newbie, doesn't get confused and thinks the comments are aimed at them?

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Hi mmer8265. Just wondering how you are and whether you had made any decisions?

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sorry mmer8265

well asked Marilyn. hope you have managed to get some information that's useful to you.

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Hi Marilyn - i have decided i will try the one week of steroids. i am tired and can't stop falling asleep. i am probably still in denial and think i dont have enough thyroxine and hope all will be sorted when i see the thyroid specialist on august 14th. been trying to source a rheumie who i can see privately but not found anything yet. just hoping and praying i havent got autoimmune problem. having said all this i can function and there are far worse things than muscle aches and pains. this website is giving me a reat insight into it all, so thanks for contacting me.

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Hi Mmer8625. Good to hear back from you.

Where abouts are you? Are you based in UK? If you start a new post something like 'Can anyone recommend Rheumy in .............. (Wherever you are based) you should get some recommendations coming through from members. Someone in Essex did that recently and she is now seeing my Rheumy. I paid for initial consultation only with private. Rheumy at hospital in Chemlsford. When I phoned I asked if any of their consultants also worked in local NHS hospital. I had my initial appointment at the private hospital then all subsequent speedy diagnosis tests and appointments on NHS with same consultant! Best £170 I ever spent!!! Excellent value for money.

Certainly the thyroid issue can cause significant fatigue. Both hubby and son diagnosed with underactive thyroid, but I have not known them to have the pain you describe which does sound like PMR symptoms. Since you have decided to try the steroids for a week you should feel significantly better within 24-48hrs on a dose of 15-20mgs. If you do not, after your trial week, then likely it is not PMR.

Keep us posted. Meanwhile take care.

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Thanks Marilyn for the very useful info above. I have the medication - doctor prescribed 20mg for seven days. very frightened about taking them as have read the side effects....aaaargh. I will put out a new post to ask if anyone knows of a rheumy in my area - i live in south oxfordshire - local hospital being oxford so hoping there are some good specialists there. i can see rheumys on various websites but none of them seem to specialise in PMR. I am thinking of taking the steroids after i have been to the endocrinologist - this appointment is only a week away, and i will see what he says. many thanks again - mmer

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If I lived near Reading I would request a referral to Dr Rod Hughes at Chertsey - or is that too far? Specialist visits aren't every week after all.

It is often a good idea NOT to read the side effects list, they have to list ALL possible ones. There are over 82 listed side effects of pred. No-one gets them all, some people get next to none. Most of them can be managed fairly well if you know how. And most of them apply at higher dose than are used long term for PMR. You'll probably find you find it difficult to sleep - although it was something I never had a problem with.

It's a mixed blessing waiting until after the endo appointment. If the pred works it will provide info for him too - because pred wouldn't improve PMR-type symptoms due to thyroid problems.

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