How do my symptoms compare given that I have atypical PMR? I have stiffness and pain in my shoulders, knees, hands, groin and hips with it being particularly bad in my shoulders and hands in the morning. I was initially ( 8 weeks ago) put on 40mg pred. for a week and now reduced to 11mg a day and reducing 1mg per month or quarter every week. The stiffness and pain only subsided after 5-6 hours but then, ( 1 week ago) after researching I started to set my alarm at 2.30 am and take my pred then and the results have been remarkable. Yes, I have some stiffness but nothing in comparison and certainly not what I would call pain which is such a relief. I have today returned from my rheumatologist who says my CRP has reduced from 62 at the beginning of this horrible journey to now being at 3 so something must be going right, I hope.
Thank you everyone on this site, this has been the loneliest time, the most painful and scary time and pleased to feel that I am not alone in this battle.
All the very best to all of you
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Markandevie
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For Atypical PMR -that actually sounds very typical to me and many on here.
As you started at 40mg maybe GCA was suspected … or as piglette say -age, although on that count they were wrong.
CRP has reduced because of the Pred and that shows a lot of the inflammation has gone… but can I ask what time you are taking Pred? And it is enteric coated/gastro-resistent (usually coloured and should say on pack ) or the plain white tablets? EC take longer to get into system, so some people take it at night.
Non coated can cause stomach problems and people are often offered a PPI tablet to help. Some people just take yogurt or some such with the uncoated tablets and that can often work OK.
If I had a fiver for every patient told they are "atypical" who comes here and then says something similar to what you say - I'd be doing alright! On what grounds are you classed as "atypical"? Because as DL says - sounds very typical to us and we have "seen" far more patient stories than that doctor has had hot dinners.
That must have been a speedy reduction - one he's dreamt up for himself I suspect. But if it works, that is fine.
I am new to this and can only inform you what I have been diagnosed with. I wasn't even sure what typical or atypical even was. Not sure why Mr ambassador wants to berate me on here. Shame. Oh and the question you ask what makes me atypical is my diagnosis from my rheumatologist and tbh have no interest in what pmr I have
You aren’t being berated in the least… all we are saying is that symptoms sound very typical to us …
.. and I just suggested that as you were started at 40mg whether the doctors thought it might be GCA… which can be more serious that PMR.
As for Pred - if it doesn’t have EC or GR on pack then it’s the plain white tablets which should be in your system in an hour or so…. As you are taking them around 2.30am are you good in the morning - or are you still getting stiffness first thing - or later in day?
Wasn't berating you at all - just saying that a lot of rheumies tell patients they are atypical when actually what they have is an absolutely usual presentation. And we are interested in what makes them think patients are atypical ... Sorry if you got hold of the wrong end of the stick.
My hands and shoulders ache for an hour or so after I get up around 6am but very little after that since taking these in the early morning. Before I had terrible stiffness until midday, sometimes longer.
Yes. I think it was the hands and the knees. Hands are still an issue but the knees seem to be under control. Hope you are coping too Jane. Horrible disease
Unfortunately far too many haven't a clue!!! To our detriment since they then think it can't be PMR and it delays diagnosis. Some even think it is a shoulder only thing!
If it was ONLY pain, I could maybe manage, but this is the answer you get when asking the OpenAir ChatGPT (AI) about other symptoms of PMR:
Fatigue and a feeling of decreased energy are common symptoms of polymyalgia rheumatica (PMR). Polymyalgia rheumatica is an inflammatory condition that primarily affects the muscles, especially in the shoulder and hip area. In addition to muscle pain, many people with PMR also experience fatigue and a general feeling of weakness.
The fatigue of PMR can be overwhelming and can limit a person's ability to perform everyday tasks. The reduced muscle strength can also make it difficult to carry out certain movements and activities.
It is important to note that PMR is an inflammatory condition that usually responds well to treatment with corticosteroids, such as prednisone. Once treatment is started, symptoms can improve significantly, including fatigue and reduced muscle strength.
"Once treatment is started, symptoms can improve significantly, including fatigue and reduced muscle strength"
It is generally accepted by most doctors that the fatigue ISN'T improved by pred, And one is left to ask how it acquired the muscle strength bit as it says quite clearly in loads of articles that muscle weakness is not a component of PMR on objective testing.
I know. I guess this is the patients objective. Patients feel muscle weakness but when testet by neurologist they says there is no weakness. Physio agrees though. I wonder how they can test it anyway - for the individuel. They do not know what I could do before PMR! Anyway - of course AI makes mistakes, that's what you mean, it it not by: " how it acquired the muscle strength bit" ? But it was just nice to read...as I feel WEAK.
Hi, I'm 56 and suspected I had PMR but due to my age, my doc didn't. Even the Rheumatologist I saw in Cyprus didn't think it was PMR but gave me low dose Pred to try and once the xrays and blood tests came back largely negative (slight increased ESR/CRP/eosinophils) agreed with my suggestion of trying a higher dose of Pred.
The low dose (4mg, half in morning, half in evening) enabled me immediately to ditch the ludicrous cocktail of things my UK GP had given me (Naproxen, Paracetamol, Amitriptyline, Omeprazole; high doses, didn't do much but took the edge of the extreme night/early morning pain). I slept through the night and would have done so better for sure had I set my alarm as you did.
A few days later (after my second Cyprus appt when we discussed the near perfect xrays and largely uneventful blood tests, RA, Lupus and other things ruled out) I started taking 16mg all at once every morning. I slept much better for that but still have shoulder and neck pain which is what started the whole damn thing (which had subsequently 'spread' to upper arms, hands, pelvic girdle and latterly knees).
I'm now thinking that the initial trigger must have been soft tissue damage - left shoulder from a lifting injury over a year ago (seemed minor at the time but I exacerbated it with further careless lifting). Left rotator cuff/tendonitis. The right arm/shoulder was fine for a while so I continued to play tennis (matches etc - quite vigorous - ten hours a week smtms) and the right arm started to lose it. Partly tennis elbow and overuse tendon problems (I speculate) plus right shoulder perhaps compensating for inability to use left shoulder generally.
The other part of the puzzle for me - which dawned on me yesterday after my second full body sports massage in two weeks - is that nothing has really made such a positive and lasting difference as the massage. Very vigorous, top notch professional - painful at the time (I had to say 'not that' when he tried to gently stretch my left shoulder back behind my back but I put up with the rest of the pain which seemed of the good variety).
So after the successful second massage, and a week of taking the higher 16mg dose, I dropped my pred to 12mg every morning and expect to continue dropping it and plan to have very regular sports massage till this whole thing goes away. I'll be playing my first tennis match for 6 weeks when I'm back in UK next weekend. Not sure how that will pan out as I haven't picked up a racquet in that time but our team is short so I'll have to give it a go.
Thank you for the reply , massage is on my list to try but after reading this I will give this a go, in fact, anything I would do to rid of the stiffness and pain. I too `was` a fit 57-year-old, running every day of the week, swimming and whatever and now having to deal with this! All the best to you
I was diagnosed in Aug and currently tapering from 15mg, on 10mg at the moment.
I was just starting my latest half-marathon training when PMR stuck and haven’t run since. I’m 52.
The good news is that after period of recovery I’m now able to exercise most days swimming, yoga, rowing, gym work etc. All at low intensity levels, but slowly I’ve been able to increase duration. As a runner you’ll recognise this as an injury recovery method and to listen to your body - you’ll know what’s possible and what isn’t.
I assume you are on methyl prednisolone by the doses you are quoting? It sounds to me as if your greater problem at present is myofascial pain syndrome - good massage helps that a lot - with PMR superimposed. Careful with the size of drop - and careful with tennis. You KNOW you have a shoulder problem - that may well exaccerbate that.
I've just checked the packet. It's all in Greek but yes, it does seem to be the methyl pred. I hadn't realised that's different to the pred generally discussed?
Very interesting what you say about MPS: I just read up on it and it does sound like what I have; is it a part of PMR or something totally different? It was odd the way the original shoulder/neck pain 'spread'.
For what it is worth - I agree. It is a major part of my PMR and the hardest bit to manage.
Methyl pred is meant to be more antiinflammatory than either plain pred - that may also mean the adverse effects are increased, they were for me. 4mg methyl pred is equivalent to 5mg pred.
Please read this. You are not atypical. The old shoulder and hip diagnosis is fallacy. PMR is a systemic illness. chrome-extension://efaidnbmnnnibpcajpcglclefindmkaj/jrheum.org/content/jrheum/4...
I've just shared it to AtopicGuy I think. I think it is a pivotal concept - but not enough rheumies are interested, They think they know about PMR - simple, benign, lasts 2 years and you give the patient pred and all in the garden is wonderful. NO, NO, NO ...
Perhaps your Doc is like my rheumatologist and waited for almost a year before actually calling it PMR vs “PMR like symptoms” she said it left the door open to try different meds but I honestly don’t think she believed I had PMR because we never tried anything beyond prednisone and methotrexate ordered lots of tests and scans but now it’s been labeled so we can try Kevzara since I made it to 7.5mg down from 70mg once below 10mg I alternated 10 one day 9.5 next I was rotating 7.5-8mg for several days when a full blown flare set me back to a year ago and I cannot get below 10mg even with methotrexate I have split my dose from very early I wait until the moment I go to bed to take 3mg if I take it earlier i struggle to get to sleep wish I knew some magic that would help take care
My PMR symptoms started with my knees. I could barely walk and even bending my knees was really uncomfortable. The stiffness and soreness spread to my shoulders and upper arms. My hips and hands weren't affected to the same extent. I was very fatigued, lost my appetite and felt very low. All movement and daily activities were a struggle.
Hi Markandevie - welcome to the forum, which is a great place to be and where you'll find many friends. I am particularly interested in what you say about the time you now take your Pred. You seem to think it has made a huge difference. Am I right?
The reason I say this is that from the start of my PMR journey, I have not yet conquered any regularity in taking it. I am a very irregular person, a bit all over the place you might say, and for that reason I take my Pred anywhere between 0600 hrs and1100hrs. I realise that's not really satisfactory and, after reading your post, I think I'm going to make a concerted effort to take it at 0200 hrs in future. It may help to get some sort of regularity, I feel. I hope you continue to find improvement in the way you deal with your PMR and wish you all the very best.
Yes, for me it had made such a difference since setting my alarm at 2.30 and taking my pred with a yogurt. I wake around 6 to 6.30 and my symptoms are very manageable. I wish you all the very best and hope you too will find an improvement soon.
Hi Markandevie, well yes, I did change my time to take Pred to 0200 hrs everyday, so at least I take it at a regular time now. But I can't say it's made that much difference, to be honest, and I do find it somewhat inconvenient, in some ways, to have to eat and then clean my teeth at that time.
The good thing is the regularity and the fact I can stay in bed quite happily in the morning because I don't have to think about breakfasting and taking Pred! I'm on 10mg at present and pain is controlled, with slight aches in upper arms from time to time but CPR is 13 up from 8 a few months ago and refuses to come down. I'm putting that down to quite bad pain in both hands and wrists. Tests show carpal tunnel syndrome so I'm assuming that's why CPR is not reducing. I have an appointment to see a neurologist about this on 7 November.
It's all a big pain, literally, isn't it? How I wish my normal life would return once again, as I'm sure you do. How are you getting on? Do hope your symptoms remain very manageable.
Thank you for getting back to me and sorry that timings did not have the effect we hoped. Being normal seems distant now but trying to do all I can with this horrible disease. I am a few months in now and currently on 10mg and reducing a quarter a week so looking at months before I get pred down to minimal, I hope anyway. Good luck with your appointment and managing the pain. Take care
And thank you, Markandevie, for your response. Good luck with your reduction of Pred. I am sure slowly, slowly is the answer to PMR and if the body still shows signs of inflammation ie PMR pain, then we need to patiently wait until we can progress. THAT I have learnt from this wonderful forum!
I have a couple more weeks on 10mg, then I intend to slowly reduce to 9.5mg, over a period of 6 weeks, tapering extremely slowly. We all have our different ways of dealing with this, of course. I have a Covid vaccination coming up this week and am dreading it, to be honest, particularly since I have read about the possibility of the vaccination causing carpal tunnel syndrome, which I appear to have developped. I don't want it to get worse...!
All the best to you and do let us know how you progress. It's so good to feel the support that this forum gives us. 😀😃
Its been an absolute joy being on here and feel supported and listened to by people who are in the same situation as me. I felt so alone when it first come on and the pain that we endure while waiting for a diagnosis was traumatic and scarey and never want to feel like that ever again. I will update on progress and be good to see your progress too. Onwards and upwards eh. I mean what else can we do. All the best to you
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