i am 74 year old identifying as a grumpy old man. First diagnosed with PMR by GP ten years ago. If I can recall he put me on a starting ‘campaign’ of 60mg Prednisolone every day for a week. I had presented to him with general muscle aches which made me feel like I had played a couple of ‘robust and competitive’ rugby games. Actually wasnt so bad in morning apart from general stiffness but after a mornings work around farm if I sat down it was difficult to get up again due to aching all over. I referred myself to a Rheumatologist who did all sorts of blood tests ending up with a ‘I think this is Fibromyalgia not PMR’ …. GP disagreed and I have been taking prednisolone off and on ever since. Each time a reducing dose but now reading a lot of the expert advice on here its always been too fast . I hasten to add more to do with me than the GP as it has made my weight balloon and has given me constant gastric issues..Following my last rapid reduction my GP recommended another visit to a different Rheumatologist with a view to getting that consultant to approve use of a prednisolone alternative due to my constantly rebounding. Currently I am worst than ever with aching as if I played prop for the All Blacks 7 days on the trot. Ive also got a recurrence of IBD and so I am currently suffering while waiting probably months to see the Rheumatologist.
I am in my own mind constantly now weighing up the options of starting pred again and if it works at least I have some concrete data to give the Consultant or hang on in there, in pain and VERY grumpy wondering if its best I throw myself under my tractor.
Just for your information constant blood tests they say always show CRP to be normal range but ESR elevated.
I am sorry to bother you if I am posting something you regard as wasting your valuable time but i just had to reach out to those that may be able to offer some thoughts.
Thank you so much and I wish everyone all the very best in their individual struggles with life.
JJ
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JJPenparc
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Others with much more knowledge and expertise will definitely be along to advise you shortly.
I just wanted to say that you've absolutely done the right thing reaching out here......and nothing that is a concern for anyone, is ever considered trivial, or wasting people's time.
If something is troubling you, however small, you can always seek help, advice and support here without fear of judgement or recrimination...... and your concern may in fact resonate with someone else and help them too.
I wish you well knowing help is on its way to you.
Never a waste of our time… don’t worry about that.
Would say the 60mg is a very high dose for PMR, it’s usually a recommendation for GCA and with sight issues - do you know why you were started at that dose.
Sounds as if you have had a very difficult few years, and you do need pain relief. Usual starting dose for PMR is 15mg, so perhaps you could discuss trying that with your GP.
Is there any chance of trying to see a Rheumy privately? That may speed the process up. If that’s a possibility, if you say roughly where you live, we may be able to give a few options.
As for bloods, not everyone has raised markers.
… and please don’t throw yourself under your tractor… some of us have some idea of how expensive they can be … as for playing for the AB’s - not sure anyone would want to be playing against the Springbok’s one day a week let alone seven!.😳
Thanks again for this info.., and by the way re the sense of humour….you know the old saying if you dont laugh you'll cry …,, and ive done plenty of that in the past!
Hi JJ, I live in Mid Wales and have my first Rheumatologist appointment this week in Oswestry, has only taken a week since the referral. Keep pressing on.
I guessed from your name that you were in Wales. My own PMR was first diagnosed while I lived near Lampeter and frankly I don’t think the GP had much experience of diagnosing and treating PMR. He started me on 50mg with the classic taper plan and the two year myth. I never saw a Rheumatologist.
I should think farming is very challenging to your PMR and the inflammation has never really been under control. You might get some benefit from taking paracetamol for pain, no more than 8 pills a day, but I have found it really does work for me. Might help you feel less of a grumpy old man.
Thanks for your reply Zebedee…agree with everything you said… must admit been using Solpadeine fir many years now..does help a bit but i think mainly because it gives me a bit of a high from the Codeine…🫣 enough to get a little smile sometimes 🤭
Well JJ IAM a grumpy woman not old but at the moment grumpy and I don't like my self trying to ride out the feelings with swimming every day and meeting friends but it's hard take care xx
PLEASE don't throw yourself under your tractor! Actually, I am sure you won't as you still have a sense of humour which is vital to getting through PMR or whatever it is you have? Stay in touch with all of us because we are here for you. I live in Tasmania but I have a brother in Northern Wales who also has PMR so you do have Welsh company!
You have every right to be grumpy if you have PMR. It's enough to get anyone down. It must be horrible to have with your line of work.
btw, my ESR and CRP have never been raised, either before or during taking pred, but I sure as hell have PMR. Not everyone gets raised inflammatory markers. The symptoms are more reliably indicative. Did you have the miraculous response when you started taking pred?
As an ex rugby player myself, I can well understand your analogies to this game.
I am no medical expert, but I did have pmr lasting just under eight years, and from my experience there are a number of questions.
60 mg a day of pred as a start really is very high, bearing in mind the suggested starting dose is between 12.5mg and 25 mg. In my case I was started at 20mg, then upped to 30mg to clear out all the built up inflammation. That worked, and I gradually over the next seven plus years got to zero without having a major flare
You say you reduced too quickly, but I can’t see any reference to how quick that was. Normally, on this forum, the recommendation is not to reduce by more than 10% of your current dose, and then to stay on the new dose by a minimum of three weeks, and quite probably more weeks if you are still aware of symptoms. If it is pmr that you have, and it has been messed about as you imply, then it certainly can come back to bite!
I think the advice to see a different rheumatologist is sound, as it appears to be not 100% clear what exactly your diagnosis is.
I wish you good luck, and also good luck to Welsh rugby, which is going through a difficult time at present.
A few years ago friend with PMR saw a Rheumatologist at the Robert Jones and Agnes Hunt Hospital in Gobowen, Oswestry and I believe MrsNails on here also did. However, that Consultant retired, but there are others working there.
Keep in touch with Progfan and see what they have to say about their appointment next week. You can use the 'Chat' function to message each other privately.
All the best.
PS I don't play or watch rugby - I make 'rag rugs'! 🤣 My photo is of one of my braided rugs.
Hi JJ, Welcome, I am a farmers daughter. You must be bad to be complaining of pain as you are . In my experience farmers are a hardy and stoic lot and a little grumpy 😀 Dad is 84 and still has "a few sheep" i.e 250! He's not easy to get to the doctor, my sister has a dreadful time forcing him to go. He actually worked through a heart attack!My point is that I imagine you've been in more pain than you let on to your doctors over the years.
I think you are doing the right thing seeing a private Rheumatologist.
I have been on Prednisolone since 2016. Started at 30mg and now down to 4mg. My blood results show high ESR and CRP no matter what dose I am on. My Rheumatologist doesn't take much notice of them as he thinks my osteoarthritis is to blame and possibly some reactive arthritis too as well as PMR. I was masking my pain from everyone prior to the prednisolone and taking a shed load of other painkillers! Never gone above 30mg but been up and down over the years.
Slow and steady seems to be the way for PMR. I hope you see someone decent.
Thanks Sandy… you are of course spot on re the stoicism and I am also now living on painkillers…. Cant take NSAIDS due to potential side ulcer/bleed possibilities as also on blood thinners…..yes i have also worked through the heart attack stuff…at least the codeine puts a little smile on this grumpy face 🫣
Hello, please don't ever think you will be wasting anyone's time on here. It is a wonderful forum and has proved my sanity in the last 3 months.
I am not able to advise you re medication, but wanted to assure you that if every you are concerned, want advice, or just need to reach out to someone, this is the place to do it.
I hope you get some medical advice soon that enables you to get your pain under control.
Just opened your post and burst into tears. Not bad for a 71year old Yorkshire man. Which is another way of saying I sympathise entirely. I’ve been with pmr for six years and I seem to be going backwards. Maybe my fault because I can’t slow down enough or manage stress. I’m with you and all the other grumpy old men
Dear JJ From what you say you came off of Prednisone too quickly. The experts here offer a dead slow approach which has worked well for me. Further if you try Prednisone again try starting at 15mg which is what my NP prescribed when I had a relapse and work your way down from there. You can search this site for the dead slow directions.
I am only speaking from experience not with any expertise so please make sure you watch for the PMR experts replies.
Always feel free to send your concerns about PMR here as this is by far the best.
Have you been taking uncoated preds? They played hell with my stomach. If so, then get enteric coated ones and ask for omeprazole or something. Hope you get sorted out soon.
like you I’ve been on pred fir 10 years and have played the yo yo game of up and down pred levels. I recently saw a private Rheumatologist in Chertsey, professor Rod Hughes. That led to me getting an injection of depo-medrone from my gp. This is scheduled for every three months. I have never got below 9mg as I just can’t stand the pain. Since the injection I have followed the DSNS method of reduction and I’m now on 8mg😃. I’m not pain free but it’s liveable!
I really hope you get some pain relief soon whether it’s PMR or fibromyalgia you have, good luck.
Raised ESR could be caused by many things, it just indicates high inflammation in body, but not the cause. But if your PMR is the cause, then as with any autoimmune disease fatigue is all part and parcel of it….
If that ESR is due to PMR - yes!!!! By the way, I just gave this link to someone else. It isn;t perfect - doesn't make enough of the fact you may need pred far beyond 2 years for a start, but as a basic intro to managing PMR it is not bad.
Hope you make progress in Cardiff JJ Penparc. We're here to be bothered - not wasting anyone's time. I'm from farming stock, struggling with PMR diagnosis and treatment on the welsh NHS too - we have every right to be grumpy !
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