Advise prior to doctors appointment please
Posted , 12 users are following.
I cannot tell you how much better I feel now I have found this group. I have had PMR for about 2 years now - I am 59 - and have felt pretty much alone as doctors either don's seem to know the answer to my questions or haven't got the time to discuss. I have recently had what I now know to be a 'flare up' I thought it was withdrawal and had to get on with it. I understand the difference now thanks to this forum and will not make the same mistake again!
I have a doctors appt on friday as a follow up to going back to 10mg of pred from 6mg. Things are a lot better but still in a bit of trouble first thing in the morning. My question is how much pain is acceptable? Should I be pain free if I am taking the correct amount of pred? Perhaps you have to put up with some if it goes away with pain relief? I would really appreciate any advise so I can go in to my doctor with a bit more information so I can discuss my needs properly. Many thanks in advance
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1 like, 23 replies
MrsO-UK_Surrey shirley40391
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If you experienced at least a 70% reduction in your pain levels following commencement of treatment, then that improvement should be maintained during the reduction process, often improving along the way. I was never pain-free/stiffness-free down through the doses whereas a few very lucky people do find that they become pain free along their journey.
It can be quite common to experience some returning pain immediately following a reduction, known as steroid withdrawal pain, and this usually improves after a few days. However, if a reduction in dose results in pain starting a few days afterwards and continuing to build, then that usually points to flaring inflammation due to the new dose being a step too far too soon. Difficult to recognise at first but, as you have unfortunately found, we learn from experience.
Some people find that taking paracetamol for a few days following a reduction in dose can help with their steroid withdrawal pain. But even better to taper the dose so slowly that the body doesn't notice the withdrawal, and neither do you!
shirley40391 MrsO-UK_Surrey
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MrsO-UK_Surrey shirley40391
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erika59785 MrsO-UK_Surrey
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MrsO-UK_Surrey erika59785
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erika59785 MrsO-UK_Surrey
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She was very insisting that I take Fosamax for bone loss becaus of Prednisone. My bone scan showed osteopenia. I am hesitant taking it because of the side effects.
I would appreciate if you could let me know your experience you might have had.
With thanks, Erika
MrsO-UK_Surrey erika59785
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As far as taking Fosamax or any other bisphosphonate is concerned, if you have been diagnosed with osteopenia as opposed to osteoporosis, then i doubt very much that you really need any bone protection at this stage other than calcium + Vit D. In my case, certainly, bone protection meds were never suggested following my DEXA result of osteopenia of my spine (my hips were shown to be normal). The T score I was given following a repeat DEXA when approaching zero Pred was -2.1. The latest scan some two years after stopping Pred showed an improvement at -1.6. I wasn't even prescribed calcium + Vit D alongside the steroids due to a misunderstanding between my GP and rheumy, so I consider myself very lucky that I didn't suffer much deterioration. I did, however, have plenty of dietary calcium by way of daily 'live' yoghurt, milk and several helpings of oily fish a week, plus a fair amount of weight bearing exercise, mainly walking but also Tai Chi and Nordic walking.
Hope that helps, Erika.
erika59785 MrsO-UK_Surrey
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I am sorry, but I don't have much trust in Rheumys who go by the book.
She asked me if all of my pain was gone when I was taken 20 mg of Prednisone, and I said.....no. "Then you do not have PMR", she told me.
She is fairly young and must not have had much experience with PMR patients.
My GP diagnosed me in September 2014, and he knew more about it, but never explained PMR to me. This is when I joined this informative forum. He did sat that I would experience "girdle pain" which I did after I had problems with my shoulders. My back hurts when I get up from a seated position....these are all symptoms of PMR.
I will continue taking calcium, Mag. and Vitamin D. I eat a lot of Greek Yogurt.
Again my thanks for your input. I do appreciate it very much. Erika
MrsO-UK_Surrey erika59785
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erika59785 MrsO-UK_Surrey
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MrsO-UK_Surrey erika59785
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MrsO-UK_Surrey
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erika59785 MrsO-UK_Surrey
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THANK YOU for your kindness to tell me your story and experience. It was very helpful. Erika
suesing shirley40391
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I think most of us still suffer from some pain/stiffness/swelling from time to time, but nothing like the original, severe pain. I can feel great some days, to the extent that I think, great, it's gone, but then bits of me, especially my arms can start being quite painful again and I can get random swelling and other symptoms. On the whole I don't usually feel completely pain free and it certainly gets worse when I've overdone things a bit. My GP imagines that because he's given me a pill, all the pain should go away, which sadly seems to be the understanding of other GP's too. Withdrawal symptoms from tapering the Pred' seems to cause some discomfort, but again, nothing like the original pain. I haven't suffered a real flare up, so can't really describe what it's like. I hope all our comments help you.
shirley40391 suesing
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