I have suffers very badly over the last few weeks, i guess like all of you so will not go into more detail.
I have just returned from the Doctors with the results of the extensive blood tests I had last week which all but one have returned clear and normal. The one that came back that is not so good and is indeed very high reading 85 points on a C- Reactive protein or CRP Test when 3 points is normal and is a signal to what could be one of many problems.
The Doctor feels that the main one to consider is Polymyalgia Rheumatica or PMR for short. On looking on Google all the symptoms seem relevant to me, I have been in awful pain particularly in my arms, hands shoulders as well has my legs and the rest of my body. I was so poorly on Monday last that i had to get Sue my wife to ring Occupational Health at work to cancel my appointment on that day (I have now received another appointment). I have also given another blood sample to see if there is improvement from last weeks sample, in the meantime the Doctor has prescribed a 7 day course of steroids at 6 tablets a day 30 whatsits or whatever and according to the Doctor and again google if that shows a marked improvement it will confirm PMR. I have taken the prem and I am mended 80 percent and it only took a couple of hours from first dose. What's you thoughts will I be joining your club..
Thanks again for your help and support and the great forum
Jim nearly 65
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jimpayne2000
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Hi jimpayne2000, welcome to the club... the club NOBODY wants to join! I'm no expert, but it sounds like PMR to me! Your CRP results and description of the pain, makes me think that... but the real site experts will be along shortly to assist! In the meantime, you have found the best site if it is PMR, so be sure if that! You may find his interesting or hopefully Informative:
Thanks very much for your quick comment and the helpful link I have pressed the button for following you so whatever that means hope that's OK. Yes I think if I was. A betting man I would put my money on joining the club cheers Jim
Welcome jimpayne it sure looks likely with a quick response like that. You have found the best place going here. The wise ones will be along shortly. ATB
My thoughts? Hmm, welcome aboard Jim, make yourself comfy, it’s going to be a long journey
If you fit the classic symptoms, you have raised inflammatory markers, and achieved blessed relief in 2 hours from pred, I’d say it’s a ‘done deal’.
30mg is a tad high (12.5-25mg is recommended) but you look like a ‘bonny’ lad, so maybe you need 30mg.
Are you one to learn from others mistakes? Take it easy! Don’t do what I did after my 3 hour miracle from 20mg of pred, walked the dogs, put my bean poles up, generally acted like the Duracell bunny, and 3 days later it bit me in the @rse! You will learn that the pred is just dealing with excess inflammation, you’ll feel much better, but PMR hasn’t gone away! It’s lurking, always ready to pounce when you’re not looking. Be that stress, overwork, infections, or simply lowering your pred by a tiny bit much.
You have lots to learn about diet, low carbohydrates; pacing yourself; the muddy waters of tapering pred doses; protection of your bones with diet and supplements; getting a dexa scan.....but for now just some R&R will do.
So welcome to you & Sue, hope you’re reading along Sue, your support and understanding will be a great boon to Jim’s recovery
Soraya_PMR thank you very much for the comment, Im looking forward to seeing the doctor tomorrow and finding out if I do indeed have PMR. It appears to me that I will need to keep myself of a short lead which I'm sure will be hard because I find it hard to stop something I enjoy doing I guess. Like you and your bean poles, yesterday I went out to the shed to brew a beer ( Thats my hobby ) to find that after a couple of hours found myself very tired and forced myself into home and bed. Guess I have a lot to learn about my new body for a while. Thanks for all the tips and tricks and your support Cheers and speak soon Jim
That ‘very tired’ after minimal activity sounds very familiar. Bet you a bean pole to a bottle of beer that the doctor confirms PMR.
Next time don’t wait for VERY tired, stop at tired ....and many will say stop BEFORE tired. The short lead thing is a hard lesson, one I’m still trying to master.
Good luck with the doc tomorrow. Come back and let us know if you owe me a beer
Sounds like you have earned membership to this club. There is a lot to learn about PMR and how best to manage your energy and Steroid Side effects should you experience them.
Ask away and you will get answers to the best of our knowledge.
Hindags, Yes it looks like I will be a member of this club but waiting to see the Doctor tomorrow for confirmation of PMR, to be honest I will be glad when its confirmed at least I will know what this terrible illness is and will have friends on this site for help and inspiration. Thanks again for your support and kind comment Cheers Jim
Hello Pongo13, I hope I have made you feel normal and thanks for your very kind comment, going to the doctors tomorrow to see if PRM is confirmed. Cheers Jim
Welcome Jim, agree with all of the above. Yes, the “Aunties “ and probably “Uncle” Mark too will be along soon with their wisdom. Mark is not mad just alternatively sane! Settle in for the journey you are not alone and there is light at the end of the tunnel. All good wishes. 🙂
Hello CT-5012, does sound like I will be joining the club and hopefully get my membership card tomorrow when I see the doctor, It will be good to get a confirmation and know that I will have the help and support from you and the rest of the lovely people on this site. Looking forward to hearing from the Aunties and Uncle Mark Cheers Jim
My commiserations that you have been diagnosed with PMR, but getting that diagnosis, and getting started on pred is actually good news as you begin to feel quite a lot better.
You have got excellent advice from Soraya! I was also started at 30mg, which everyone tells me was high, but it certainly worked, and I have come to no harm at all after three and a half years into PMR. For your information my blood markers came down almost straightaway, and have been normal ever since; however, that has not meant the PMR has gone away.
My advice, after all this time is, firstly to give yourself plenty of rest, and secondly, don't try to taper down too quickly. PMR can, and does, botch almost any plans people make! It has a mind of its own. Some GPs and rheumies try to get patients off pred asap, but that often is a recipe for disaster!
There will be lots of really good advice on this forum, so keep in touch.
Hello Charlie1boy, Yes I went to the doctors yesterday and have been confirmed I have PMR and yes your right he got a bit annoyed when I said people on this forum have suggested I take my time coming down on the dose and wants me to reduce from 6 tablets to 4 which seems a lot to me, however to stay on six for one week followed by the four for three weeks. So fingers crossed. Thanks for the tips Cheers Jim
As was said at the start, since I assume your 6 tablets are 5mg one you are currently at a high starting dose for PMR, 15-20 is much more usual. Dropping now to 4 tablets or 20mg should be absolutely fine as you have only been on pred for a short time and it takes you to 20mg quickly and easily. You might feel a bit strange at the change in dose but it might not bother you at all and is a common way of using pred for things other than PMR.
But don't let him drop the dose by 10mg at once again!!!! From 20mg 2.5mg at a time is plenty until you can't manage it and then you do 1mg drops. From 10mg it is not more than 1mg at a time.
Hi Jim and welcome to the club you didn’t want to join. 30 mgs is a high dose for PMR and the sooner you are on a start dose of 15 - 20 mgs the better really, avoiding ups and downs of dose until your inflammation settles and relief from pain and stiffness is achieved.
You will want to know more about how to manage your condition and luckily you are in the right place to find out all you need to know.
Remember Prednisalone is only relieving the inflammation of the disease, you will still have PMR ( a serious systemic disease) for possibly a few years. You need to organise your life accordingly by pacing your activities and having plenty of rest. I won’t bombard you with information now, but I am glad you have experienced the relief Pred can bring. Keep in touch. There are quite a few men on here it’s just that we women make a bit more noise.
Hello SheffieldJane, Has above, I went to the doctors yesterday and have been confirmed I have PMR and yes your right he got a bit annoyed when I said people on this forum have suggested I take my time coming down on the dose and wants me to reduce from 6 tablets to 4 which seems a lot to me, however to stay on six for one week followed by the four for three weeks. So fingers crossed. Thanks for the tips Cheers Jim
Doesn’t your doctor realise that PMR is long term not a couple of months? If he is trying to check if you have PMR he should be giving you around 15mg for say a week. What dose are each tablet?
As others have said - welcome. 30mg is quite high starting dose for PMR so you should be feeling good. Have a look at attached, it may help you and your wife to understand things a little better.
Sure you will have many questions along the way, and hopefully as you get more knowledgeable you will be able to help others, as you know men are less likely to get PMR than women so another male view point is always welcome.
I agree that 30mg is a bit higher than what is usually prescribed for a diagnostic dose, but as men typically weigh more than women, 30mg might not be excessive in this case.
The weight/dose relationship is less critical than you'd think with steroids. 25mg should be more than enough for anyone and that's what the recommendations give as a maximum.
Hello Dorset DorsetLady, that is a great piece you wrote on the link and as above I went to the doctors yesterday and have been confirmed I have PMR and yes your right he got a bit annoyed when I said people on this forum have suggested I take my time coming down on the dose and wants me to reduce from 6 tablets to 4 which seems a lot to me, however to stay on six for one week followed by the four for three weeks. So fingers crossed. Thanks for the tips Cheers Jim
Most doctors want us off the Pred ASAP, they just don’t like it!
As we’ve said 30mg (6 tablets) is quite a high starting dose, and maybe he’s realised that so now he wants you down to a more ‘normal’ dose. That’s understandable. 20mg (4tabs) is a more sensible starting dose for PMR.
Couple of things I would say - your body probably will not take kindly to the 10mg reduction (it’s 33% whereas 10% is recommendation for tapering) so don’t be surprised if for the first few days after the new dose you feel grotty. That’s steroid withdrawal, and should go when your body gets used to new dose. However, if it goes on longer than, say a week, or if things gets progressively worse then the dose is not high enough - so back to doctor to tell him so! Don’t let it go on too long and get out of hand.
Secondly if you are okay on 20mg, don’t let him reduce you too quickly after that. Preferably every 4 weeks (assuming you and your bloods are okay) and 2.5mg a time, not 5mg. You might have to negotiate on that if he’s he’ll bent on getting you down! So good luck.
Hi Jim (nearly 65). CRP levels and pred miracle mirrors mine when diagnosed. Dr prescribed 30mgs pred, but Rheumy said response to 15mgs would determine PMR or not. I strongly suspect you may be joining this club for a while. Glad you have found this forum early since I am sure you will find it a Godsend.
I assume you return to GP before the end of short course of pred, since you don't want to be left high and dry when your pred runs out?
Hello Marilyn1959, yes the pred ran out the day before the visit to the Doctor and I went back to condition before the pred within just a few hours. Any way as above I went to the doctors yesterday and have been confirmed I have PMR and yes your right he got a bit annoyed when I said people on this forum have suggested I take my time coming down on the dose and wants me to reduce from 6 tablets to 4 which seems a lot to me, however to stay on six for one week followed by the four for three weeks. So fingers crossed. Thanks for the tips Cheers Jim
Hi Jim, Presupposing each tablet you are taking is worth 5mgs and it is
PMR, then the reduction to four tablets as suggested by your GP, is about right as an initial dose to manage the PMR symptoms. So this reduction shouldn't in theory be a problem. It is further reductions when you get to 10mgs and below where the dead slow method really comes into it’s own. Though some of us do experience problems reducing from higher levels. Listen to what your body tells you and go back to GP if what he is suggesting isn’t working for you.
Hello Marilyn 1950s yes confirmed and ready for the trip, silly boy read the gas meter yest day evening and knelt down on one knee of which I have just had a baker's cyst burst so suffering big time today. Never mind living and learning. Cheers Jim
I can sympathise with that Jim! I had a burst Baker’s cyst which drained into my calf, mimicking a DVT for which I was wrongly given anticoagulants (blood thinners). Having “burst”, I’ve still got one behind each knee, so can’t squat. It catches you out though, as you forget about it and then the gas meter needs reading...! Ouch!
30mg is a bit high as a starting dose - but with a response as quick as that is fairly likely to be PMR rather than anything else it could be. The reason so many of us have said it is high is because PMR is characteristic in responding to moderate doses where the other things tend not to do so so dramatically although they WILL respond to a high dose. But 2 hours - impressive! Mine was less than 6 but not sure how quickly as I was sitting working at the computer and it was only when I stood up and walked downstairs and back up with a cup of tea I realised the minor miracle had happened!!
The others have said most things but I'll underline one very important fact: pred has not cured anything. It is dealing with symptoms. It's the difference between a bucket under the dripping tap to keep the floor dry and replacing the washer and stopping it dripping. Your muscles remain intolerant of acute exercise so DON'T think you can go out and do that gardening/decorating/snow shovelling you haven't been doing. If you do you run the risk of every muscle reminding you you have PMR for the next few weeks and the muscles don't repair themselves as normal, post-exercise sore muscles can last a LONG time! So don't go there - you will get back to doing stuff but you will have to "train", building up the time and the intensity slowly.
Thanks for giving us your name and photo - that's brave and good of you! Now we know you are quite a fine figure of a man and so 30mg might be right for you. I was an 8 stone strip of wind and an hour and a half after taking my first 20mg dose I felt a tingling all through my body and I leapt out of the chair like a jack-in-the-box! So welcome to the PMR club. I am recovered but still work for PMRGCAuk, the national charity for PMR and GCA. Please think about joining - just £10 a year to help support our work! pmrgca.co.uk
Good luck and I wish you a straightforward journey through your PMR.
Hi Jim, you do seem to have PMR symptoms, very similar to mine. I am so glad you were given pred as a trial, my GP said I had a virus, I had to go privately to a rheumatologist in the end.
Some years ago I had a diagnosis of PMR and was treated with steroids. Only a year later was I tested for Lyme and it was positive. Two months of antibiotics was all that was needed.
Welcome!!!! You’re one of us, I’m sorry to say. I’m fairly new here and there’s no better place to be for answers and support. The knowledge here will astound you and you will find it helpful in dealing with your doctors in days to come. They are indeed “the wise ones”. Glad to hear you responded so quickly to Prednisone and that your pain has eased! I was only confirmed last week and that confirmation does make you feel like you are on your way to healing.
I am no expert but it sure sounds like PMR. The experts will arrive and they are very good. They have helped me a lot. Your symptoms sound similar to mine and the Prednisone helped me, so welcome to the Club NWTJ!
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