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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Shirley, it isn't easy to answer your question as to "how much pain is acceptable" as some of us find a level of pain intolerable whilst others will tolerate it more easily.
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!
Thank you so much for your advice. I am all about information gathering now! It helps to feel proactive rather than helpless. Thanks again
Hi Shirley,
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.
Thank you very much. I try very hard not to complain about my GP as I cannot expect him to be an expert on everything but I have basically been left with various tablets and told to take the dose down on a plan I was given and go away as their job was done. I have ended up on anti-depressant tablets as I have found it so hard to cope on my own so I am really hoping that now I have found this forum my mental state will improve and that will be one tablet I can stop taking! Thank you once again for taking the time to reply
Hi Shirley, I just cannot imagine what life would have been like without this forum. I would have been totally isolated. I have learned more from the people here than I would have from dr. or rheumy. The people on the forum are very supportive, have loads of information and nothing is ever too much trouble to them. I am on my own and I find it difficult at times. My son lives with me and he sometimes help with things I cannot do. Hang on in there and life and PMR will get better. I am more or less pain free and I have reduced from 20mg last November and am now on 10mg from 1st June. The fatigue is my main thing and not being able to walk any distance without my calves pulling. I suppose it is swings and roundabouts. Good luck. Regards Pat
To help with your "information gathering", there are now two great books available, one written by Kate Gilbert of PMRGCAuk called 'Polymyalgia Rheumatica and Giant Cell Arteritis: a survival guide', and the other available from PMR and GCA North East support group called 'Living with PMR&GCA'.
shirley dont dispare you will get there in the end though it is a long road. i have been very lucky. not had any side efects at all. i am now down t 1 mg for the second time, but i must say i feel better at 1mg thiis time than last. i lowerm my dose by quater per tablet each time, it has taken me 6 weeks to drop quater. i nkow its slow but it suits me. each time i lower i take 1 paraceamol every 2 days 1 week and feel .good. my only prob is bad knees, but have read on another forum that its a common thing. when lowering pred at this dose. though i dont realy think its to do with pmr.i have been on pred for 3.5 years at 73 , i think its r which has been coming on over that time and the higher doses of pred have been masking it.
I didn't like the pred side effects. The mental and mood effects. I keep some sort of a balance or trade off between pain/stiffness, activity and side effects.
Sufficient activity so I don't waste away but not so much I aggravate the symptoms. Pacing and not overdoing is key. And changing how I do things.
I tolerate mostly stiffness but occasional twinges in arms. Nowhere near the untreated debilitating screaming pain of 19 months ago.
I've been on 6mg pred / day for a few months. 5mg was just a tad low, a couple of odd things (swollen leg / mild shingles) upset the apple cart. And my usual headache changed its character a bit. Its easy to imaging bad things are happening. The side effects are currently tolerable, almost not noticeable to me.
Reducing pred was a bit of a struggle. Had to write myself instructions and follow them. Lucky I didn't notice any withdrawal pain. I'm about due to reduce a bit more.
All in all I feel I'm one of the lucky sufferers (if such exist) and its all sort of "normal" for PMR.
Thank you for your advice. I hope things continue to improve for you
Thank you so much for your reply. I really do feel better about the whole thing already as the replies I have had have been so friendly, upbeat and informative. I think my mind set has changed from desparate to get rid of it at all costs and trying to ignore it, to taking it steady and learning to manage it so I get a better quality of life right now when posible. Thanks so much for your support
Thank you for your message. I hope you continue to get better sounds like you are nearly there! I feel so much better for having found this forum and asking for help. The response has been fantastic and very friendly.
I agree with you MrsO about the slow process. -- I am reducing right now by 1/2 mg of prednisone for 3 days, and then I will go to the 1 mg reduction for 1 week from 14 to 13. When needed I will take a couple of extra strength Tylenol which I need at times for back/sciatica pain anyway.
Erika, I sympathise with you having sciatic/back pain alongside PMR, making it quite frustrating sometimes not quite knowing which pain is which. Good luck with the rest of the present reduction stage.
Thank you for your well wishes on my own reduction plan. I hope it will work. It is indeed frustrating to have to deal with piriformis/myofascia syndrome and sciatica pain. I was told yesterday by my new lady RA doctor to have an MRI done to make sure to find out what the cause might be. It is not PMR but inter-connected which she does not agree with. Physical Therapy has helped.
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
Paracetamol is equevelant to Tylenol in the States. Since I had never heard of it I had to look it up so thought I'd pass it on.
Audrey
Erika, I suffered a forward slippage of my lower spine (spondylolisthesis) and damage to a disc following a fall and landing hard on my derriere many years ago, so at least I suppose you could say I was lucky in that I knew the cause of some of my back pain whilst suffering from PMR. The difficulty was recognising which was which. Any bouts of sciatic pain I knew immediately were due to my spinal problem as I had experienced sciatica on a few occasions long before PMR.
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.
Thank you, this helped a great deal. I will see what the MRI might reveal tomorrow about my spine.
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
Erika, I don't wish PMR on anyone but that comment by your rheumy just makes me wish that she could walk in your shoes for just a short while.
It is very disappointing to deal with this kind of a doctor one would like to put ones trust in. Maybe she just meant the present spine/sciatica problem which probably is not PMR......not all pain is, but the struggle I had to deal with since the PMR diagnosis, should be put into consideration, and that the muscle inflammation is probably some cause of it.