Advise prior to doctors appointment please

Thank you so much for your advice.  I am all about information gathering now!  It helps to feel proactive rather than helpless.  Thanks again

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'.

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

 

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.

I stumbled onto a platform from a train in the dark at an unfamiliar station - my friend tumbled off just in front of me and ended up at the fence the other side of the platform, with me running into her.  When my initial lower back and leg pain started off a couple of weeks later, the stumble was blamed for further injuring my already long term damaged spine.  As we know, many people say they experienced a period of severe stress just prior to being diagnosed with PMR - rightly or wrongly, I strongly suspect that my PMR resulted from the stumble causing severe physical stress to the tissues around my already damanged spine.  Following an MRI, an orthopeadic consultant decided not to go ahead with the spinal fusion he had been considereding as the cause of my pain, saying that the spinal slippage was not severe enough to be causing the amount of pain I was in and was adamant that something else was going on.  How lucky was I avoiding spinal fusion when PMR was the real culprit!  Thank Heavens for that consultant.  

Erika, I should add that a long time after our incident at the train station, we read an article in my friend's local newspaper saying that the offending platform at the train station produced an unusually steep drop from the trains and was being modified!!!  It seems I wasn't the only passenger that had come to grief.

MrsO, this is a fair warning about doctors who think surgery is the ONLY option.....sometimes it is not.  I had a couple of stumbles, too but basically I think that PMR is involved with most of my pain. Unfortunately my new Rheumy thinks otherwise.  It is good to seek as much information and research about a health problem.  It is our body and we need to make the decision.

THANK YOU for your kindness to tell me your story and experience.  It was very helpful. Erika

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