Last night my nech, shoulder back of neck and behind ears all started to hurt, then started with awful headaches, went to bed early, this morning had to take my pred 2 hours earlier than normal the pain and aches were so bad.
Went for my bloods doctor said go basck to 10mg till you feel well enough to reduce, so thats what i am doing, was doing so well i did the dead slow method, 2 weeks long with going on holidays, so will have another go when i feel better.
Got a copy of my DEXA SCAN
limar spine T Score -1.2 Z Score 0.6
Rt Total hip -0.4 Z-Score 0.9
Lt FemoralNeck T Score -1.1 Z Score 0.4
Lt total hip T Score -0.2 Z Score 1.1
Osteopenic. Degenerative changes in the spine, a wide range of BMD values in the spine, the significance of this is unclear.
Investigations FBR,ESR,U AND E,LFT, BONE PROFILE SERUM ELECTROPHORESIS.
CONSIDER BISPHOSPHONATES.
Rescan advice in 2 years
I still feel as though i do not want to go on the Bisphosphonates, cannot see the doctor again for 3 weeks, so will have a word with her.
With readings like that they would have to do a fairish job to convince me to take bisphosphonates - those readings are barely into the osteopeneic range and well above osteoporosis.
However - it sounds as if they are concerned about the fact you have very mixed readings in the spine and it is possible to have the odd vertebra that has very low readings that could compress at a later date. I might be wrong - but I didn't think there was a lot of evidence for bisphosphonates doing much in the spine. I believe Forteo has been seen to rebuild spinal bone.
Why not call the National Osteoporosis Helpline - I've been told they are really very good at talking you through what it all means and your options.
PS - have you tried Bowen therapy? The neck and head pains could be due to tight muscles and the higher doses are enough to help, it certainly happened to me and Bowen did help a lot.
Many thanks Eileen, i have tried to find a Bowen specialist but it does not appear to any where i live, i have asked the massage lady who does my nails, and she had never heard of it, she offered to do massage for me, but also she has not heard of PMR, when i have my hair washed the young lady massages my nech and i do get some releive from it.
I will try and ring the Osteoporosis helpline.I feel better now after speaking to you.
morning margaret. sorry to hear you had to up the pred.to 10. and i am here moaning cos i have decided to up by .5. to 1.5 because around 4 am i get aches in the muscle at the top of my arms, which are pretty bad. but then when i have been up an hour or so it goes. so what that is i dont know. i am so scared i am going have a bad flare and have to up like you to 10, .just wheni think i am nearly ready to join club zero it raises its ugly head. this is the second time i have got down to 1 mg. last time i upd to 2 this time i am trying 1.5.
but the knees are still bad, will ask for xrays when i see doc on wednesday.
A pred dose of 2mg is very low and doing very little in the way of side effects of any sort - but it is obviously managing your PMR for the full 24 hours - the return of pain in the early morning suggests the 1mg isn't doing that. If I were you I'd stick at the 2mg for a lot longer and don't let a doctor persuade you it is such a low dose it can't be doing anything for the PMR!
Hi Pauline, i am going to try 9mg again today, I find that my neck and shoulders are the only thing giving me aches, apart from the temple.
When i was on ten full time the temple pain was a lot worse, but when reducing to nine this was 80 per cent better,started reducing on the 7th June on the 7th July finally 9mg full time kept to it on holiday, but when i came home it got worse(SHOULDERS AND NECK ETC) so went back to 10mg and now giving another go at 9.
Ater i take my pred it takes about 2hrs for the aching to ease, but i put this down to withdrawls system.
Had some bloods done this week so will see what they say, i know people dont set store by them but i will know if the results are either the same or higher than my last one in april.
thanks eileen and margaret thats why i persivered on 1 mg till my bloods were done, . because with me the blood readings seem to be correct., as my journey on 1 mg wnet on i eventually had to take paracetamol to help with the pain.but eventualy the para didnt seem to work, but yesterday no para and back on 2 mg so we will see