My PMR presented three years ago , and the pain I had at that time was bilateral neck, shoulders. upper arms and lower back.
I have been trying to reduce from 7mg to 6.5 using a DSNS method for the last few months.
Last time I got down to 6.5 every day was in late August. I had no return of PMR symptoms, just extreme tiredness. Because I had a lot going on in Aug and Sept I put myself back to 7mg and immediately felt much better. On 7mg I had needed to do much less pacing and felt better than I had felt since PMR started.
So 3 weeks ago I started the slow journey back to 6.5mg.
A few mornings I had a stiff neck. Today it is a bit off an effort to lift my arms sideways to any great height, something I think has been ok since I have been on pred, and was awful before diagnosis.
And today I have had severe pelvic pain, which has increased over the last few hours ro the extent that walking is VERY painful. Paracetamol has helped not a bit.
This pain is new to me. It’s a bit like pelvic pain I suffered at the end of my last two pregnancies. I note from searching on this forum that several people do get pelvic pain as part of their PMR symptoms.
I am supposed to be having a 6.5 day tomorrow, and a, feeling a bit unsure about what to do.
It’s impossible to get an appointment at my GP within a couple of weeks, though I guess I could try tomorrow in case they take pity on me in my plight!
I usually get night sweats as one of my first signs my dose is too low.....feel fine from that point of view. And I remain pretty energetic as I have been for the last few months apart from my abortive attempt to be on 6.5 in August.
What do you think?
Mary
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Mary63
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I really don’t like the sound of your restricted arm lift. It’s so classic early PMR. The pelvic pain and the neck pain could be related to activities. Pelvic pain in pregnancy is related to carrying the bundle around. Have you been lifting at all? Our bodies are pretty unforgiving. You have probably given it long enough. It sounds like 7 mgs is your dose. It’s not too bad. I should listen to myself, 6 mgs is not doing it for me really, but I can stretch my arms out and up. My walk has gone a bit spraddley though.
Thanks for your reply Jane. No I haven’t been lifting at all. It’s really strange, and my arm symptoms at present are v mild. See my later answer to all for my plans. AND maybe listen to your own advice? Hope you feel better soon
You ladies are so informative! I had no idea about the arm lift thing being a classic sign of pmr. About 4 mos in, I had a cortisone shot in my shoulder as I couldn’t raise my right arm ( my pmr has always been one sided. I mean it affects both sides, but not at the same time 😳). Amazing that my rheumy didn’t pick up on that, while he was telling me he couldn’t give me a definitive diagnosis of pmr!
No-one can give a definitive dx of PMR - it is a clinical observation with no conclusive tests. And if you mentioned it was only on one side side that may not have registered...
The usual rule when you taper is if pain is immediate but eases after a couple of days it's pred withdrawal. If the pain increases it's more likely you need more pred. Reading between the lines I think you may also be doing too much? I'm in a bit of the same situation myself at the moment because of having too much to do right now, which I have no choice about. Have managed to give myself a flare.
I wonder if when you felt fatigue before and went up to ease the fatigue a better reaction for your long term tapering success might have been to make sure you got more rest? That's water under the bridge now, but can you cut yourself some slack this time? Yes, as Sheffieldjane says, you probably do need that extra .5 mg right now, and it would be better to take it now, or even a bit more, before things build up any more. You could take an extra 3 mg or even 5 mg for a couple of days, and then taper very quickly back to 7 if you had been all right there before most recent taper attempt. The other thing which happens is the disease itself can get a bit more active and we have to bite the bullet and deal with it before it gets out of hand. I'm a slow learner, and reluctant to increase, but learned from bitter experience last year that stamping out a flare at the beginning is more effective and results in less total pred intake than trying to tough it out.
Thanks for your reply. See my later reply to all for my plan!
Regarding resting, I do still rest much more than I used to before PMR and usually feel well. I would not wish to attempt ‘normal’ activity levels. But when I was on 6.5mg I seemed unable to do much at all, and felt ghastly. Thanks for your help.
Hi Mary, I was diagnosed with PMR in 2015, and all I had at the time was pelvic and lower back pain after an MRI showed that blood tests where required my ESR and CRP where elevated so I went ion pred . I got down to 3.5mg great for a while after a chest infection had severe neck upper back and chest pain , so I have sort of reverse of your symptoms . So yes pelvic pain is common .i’m back On 10mg unfortunately but the pain under control again . Feels like i’m Starting again 😩 good luck
Thank you everyone for your replies. I am going to stick with 7 for the next few days. And see if symptoms subside. If they do I will try 6.5 in the New Year ( or later as due to go to New Zealand in mid Jan). If they don’t I will bounce up to 9 or 10 for a few days to ZAP the inflammation and then come back to 7. I will also do the right thing in TRYING to contact my GP today.
Personally - whatever pains you have or don’t have I wouldn’t reduce before flying to NZ. If you are okay at 7mg then no harm in staying on it for a few months. I was at that level on one of my trips out there, and stayed on it for the whole six weeks I was there. As a bonus it might help your adrenal glands start thinking about working again!
Very envious of your trip, this time last year I was getting excited- flew out on 30 Nov for 12 weeks!
Re flights, take extra Pred in case you need an “top up” on your stopover. Plus carry in your hand luggage along with copy of prescription.
Hello Mary63. I have had all of the symptoms that you describe. With me the pelvic pain was the start of my PMR and led to my diagnosis. The pain felt like someone had reached up inside me to do an internal and then grabbed hold of everything they could and were trying to pull it out through my ladybits. My shoulder and neck issues didn't happen until I had a flare after being steroid free for a few months. I would phone the surgery as soon as the surgery opens and tell the doctor's receptionist that it is urgent you get into see him that day. They are supposed to keep a couple of emergency appts available per day, which is why you should phone as early as possible. It might be necessary to increase your dose to higher than your 7mgs for a couple of days to bring it under control again and then drop back to your 7mgs if you can.
I had very bad pelvic girdle pain before I was diagnosed. I was walking like a mouse - little steps - I couldn't take proper steps. Had no idea what it was of course - it was obviously the PMR - when I went on the Pred - it sorted it. Along with my - by then - appalling arms, etc. So may be PMR symptoms - of course your GP will be able to confirm. Of course it could be something entirely different. Good luck with it - let us know how it goes.
I would go back to 7mg and see if that helps the pelvic pain while I waited for a GP appointment. It sounds as if you are very much on the borderline and it would be such a shame to waste all the good work you have done.
But I would speak to the doctor about the pelvic pain - it may be coincidence.
Hi Mary 63, initially I got shoulder and arm pAin. A couple of weeks Later i also got pelvic and groin pain all prior to diagnosis. It is all part of PMR pattern that some people get. I still get it when lowering dosage for a couple of weeks before I settle on new dosage. Take care.
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