I have had PMR since December 2017, or so I think. I was prescribed steroids end Jan 2018, raised blood readings, and swollen shoulder unable to lift arm. I had a label for my condition! I am now down to 2.5-2 mg after a slow taper. During the tapering I would occasionally raise the dose, but it didn’t really make a difference. Perhaps had I returned to the initial one of 15mg it would, but even there the miracle cure only lasted a couple of days. I have never been really painfree but have found that if I go walking it helps, if I’m not too exhausted in the first place. Other people may have found this, but I sometimes have weird feelings, shaky, ‘fizzing’ inside, mild headaches, sweating, and itchy skin. I also feel sharp short pains in any part of my body, mainly legs or tips of toes, and occasionally an erratic heartbeat.
Prior to my official diagnosis of PMR, I had one of Osteoporosis. Does this explain the ‘straightforward’ pains? In 2013 came the diagnosis of diverticulitis, for which I had to have hospital treatment. I had the weird shaky feelings etc then too. Going back further I would have dizzy spells, stress and chronic fatigue (which I interpreted as M.E. - not recognised then by my doctors). Long nosebleeds which made me feel faint and weak, and a few other things but probably unconnected.
This leaves me with the feeling that it isn’t straightforward, especially if I up my steroids now, as in the past they didn’t seem to change things. I have never known quite if I am having a flare, or if it’s one of the other conditions raising its ugly head. I read that to be on the right dose means being pain free, or at least the pain being controlled. But if it’s something else....?
Apologies for this being long and drawn out, but I never get chance to discuss this ‘history’ and get advice when I am able to see a GP.
bleeds which made me feel faint
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ClarkB
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"Other people may have found this, but I sometimes have weird feelings, shaky, ‘fizzing’ inside, mild headaches, sweating, and itchy skin. I also feel sharp short pains in any part of my body, mainly legs or tips of toes, and occasionally an erratic heartbeat."
I've had all that at one time or other - the erratic heart beat was atrial fibrillation which is almost certainly due to the autoimmune part of the PMR.
I think you weren't started on a high enough dose to get things under control - some people need more than 15mg and if things weren't sorted initially you've not even been playing playing catchup. PMR lasts an average of just under 6 years - and I'll bet you are just still in early days relatively speaking and never been properly managed.
You need to tell your GP you want a referral to rheumatology if you haven't already been to one. GPs can be capable of diagnosing and managing PMR - but all too often they aren't I fear.
As ever I really appreciate your posts and responses, particularly as my query this time was a bit daunting and wordy! I have Just returned from a hefty session at the dentist ( involving posts and stitching) so just putting my PMR on the back burner for a bit! Good thing I wasn’t on AA as this was necessary work. I have done a print out so that I can absorb your comments. Many Thanks. Brenda
Wow that is a lot to have to handle. Sounds like quite the misery.
Yes I have itchy skin, sweating and sharp short pains plus more. I think it is all prednisone related. Sounds like you need a dr. to help you sort it all out. I have so much going on I am thinking of trying an internal medicine dr and see what he has to say about it all. The Gp just isn't any help.
Thankyou Linny for your comments in answer to my wordy query! Have just returned from dentist after a long session, and have temporarily switched off from my PMR! Good thing I wasn’t on AA as it was necessary treatment. Will study my replies later. Brenda
You may have fallen foul to the unmanaged and too rapid decrease in Pred over the last year , and maybe although you increased the steroids for a time , the length of time you increased it wasn't long enough at one level for it to finally breakthrough the PMR related pain.
I have noticed , from my reading of people's progress on the forum over the last year , that people seem to be displaying a much slower return to feeling pain managed or pain free on a dose after they have tapered to fast and had to return back up the scale.
It is possible that this was happening to you , and maybe looking at whatever record of your tapering progress might help.
In terms of the PMR , and its associated pain and stiffness , although we are all reluctant to have to make a big increase because we don't like the steroids, it may be educational to try this and go back to a much higher dose again , with Doctor Supervision , and a much slower taper.
Of course , this could also prove that the worst of your pain may not respond to steroids and still be caused by the PMR in your system , as I say diagnostic education .
But , you do have many things that were going on , right back to the Diverticulitis , nose bleeds and other dizziness and Fatigue related symptoms which could mean something else has always been going on there and no one has joined the dots.
The PMR and Pred together could well have increased the issue and its underlying symptoms , I know it did for me.
These growing symptoms over time could well be another sort of syndrome , rather than being caused by the PMR or OA , it could actually have contributed to it and to the extra pain that doesn't get solved by Pred now , and this really needs discussing with the GP and with a Rheumatology referral.
These symptoms as you say yourself could link to Chronic Fatigue.
They could link to a Neurological syndrome like Neuralgia , mixed Neuropathy or Fibromyalgia.
It could be some form of other connective tissue syndrome , especially if you have always suffered these inflammatory , mixed pain and joint issues , something like myself like Ehlers Danlos or Joint Hypermobility Syndrome. Diverticulitis along with gastric issues , generalised joint and nerve pain , dizziness and orthostatic symptoms are often connected from connective tissue problems.
It could even be some sort of Endocrine , Hormonal or Cardiology connection that when discovering the key could be solved ( with a long term regime) with lifestyle and medication that could ease alot of the symptoms.
Obviously , I'm basing my advice on the fact that you , like me have various symptoms that caused you health issues a long time before the PMR raised its head.
I would suggest I good GP appointment and a referral down the diagnostic path.
It does take time , it can take alot of time , but when the solutions of your interconnecting issues are found and you can start treatment ( even if it's treatment for life) it will be worth it.
Thankyou so much Be for your considered and detailed reply. I didn’t know if anyone would be be able to face reading and responding to my drawn out post! Had put off writing it for ages.
I will re-read and absorb your reply later -have printed it off. Just back from the dentist and reaching for the Paracetamol after a long session. Good thing I wasn’t on AA. Really appreciate your response! Brenda
I think you need to find out why you are having the bleeding episodes. Referral to the appropriate specialist. That aside, it seems quite possible, likely even, that as the others said your PMR was never properly controlled from the very beginning of treatment. I didn't have the same difficulties as you, but I can attest to the fact that once you have had to increase a dose because of a "flare" it can be much more difficult to get back to a lower dose. My personal opinion, and that's all it is, is if you could be on a high enough dose of pred to deal with the pain, and recommendations say between 15 and 20 or sometimes as much as 25, then you could start a very slow sensible taper once the symptoms are controlled. If you do not experience relief after a few days at the higher dose, then some competent medical person needs to investigate what else might be going on. I find it concerning that your initial relief at 15 mg didn't last. How long did you actually stay at that dose? Did your doctor require you to taper even though the symptoms had returned?
Hope the tooth thing is going well and you are healing.
Thankyou very much for replying, Heron. Apart from a bit of a headache, my gums/teeth work seems ok. I was given a list of instructions to avoid infection. The procedure left me quite drained though, as there was a lot of hammering going on! As it was necessary work, it wouldn’t have been done if I had been on Alendronic acid, which would have created its own problems.
My initial steroid dose was a trial 20mg for a week, as my dr and consultant thought my PMR wasn’t a typical presentation. Then 15 mg for a week,10 for 2weeks then reduce 1mg monthly. Later on to have a lowering on alternate days. He recommended I tried the short course of Pred as a diagnostic challenge. The aim was to reduce within an 18month period, and adjust accordingly if I had a flare, which I did, (although still wasn’t sure what a flare actually was!)
What I’ve always been uncertain about is whether it is right to blame symptoms on my latest illness or a previous one! I’m not feeling the dizzyness, etc that I have had for a few days, which come and go. Some of these sensations I had years ago when I was working, but was it PMR then or something else. I’m getting exhausted in thinking about it all!
I haven’t had nosebleeds for quite a long time now. I had always been prone to them, and wasn’t concerned until they were severe, lasted half an hour and made me dizzy and incoherent. Although I am going into another medical issue here, my experience of nasal cauterisation at hospital made it worse.
I know this is a forum to discuss personal or general related issues, but I do sometimes feel like a hypochondriac!
No - you do have genuine problems - whatever is casuing them! It is something that comes with advancing age too - we'd always found the conversations of the older generation amusing. Now it's us ...
I tend to forget the advancing age bit. Think for so long I saw my mother as the old person, doing her shopping, taking her for drives etc, that I never noticed it creeping up on me, especially as I worked until seventy.
Yes, I'd agree with those who think your taper was too rapid. You may have had an atypical presentation of PMR (probably not) but your prescribed treatment was also "atypical" as normally one would be at 15 or 20 for at least four weeks before beginning a slower reduction. Even dropping from 20 to 15 was a 25% reduction and the thing is your body wasn't given time to adapt, even though you'd only been at the higher dose for one week. Same issue with dropping from 15 to 10, although that was a 33% reduction so even more challenging. Not the kindest start I'd say for treating a long term illness. I hope you can get a handle on this and feel better soon.
Thankyou Heron. I never really questioned dosage, as I assumed Dr/consultant knew best! I suppose I shouldn’t go in for appointments looking bright and breezy, etc like I’m going for an interview!
Just off to opticians, hence my hurried reply. Really appreciate your comments, and will absorb what you say. Thankyou!
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