Thanks to this great forum which has sustained me in many a dark hour.
I have had PMR and been on preds since January 2011. Now down to 5/4mg a day and reducing slowly. My bone scan showed I have some osteopaenia though my GP thinks it's OK for my age (66). He offered me bisphosphate medication. After he explained it and I read a bit about it I have strong doubts about putting this in my system. I am quite an active woman or as much as I can be. Any views on this?
Hi Miu, I like yourself would be lost without this forum. I am a newbie to PMR just back in November past. I am presently on 15mg pred. Someone with more experience than myself will be along to answer your questions. They are a great bunch of people who will steer you in the right direction. They will support and advise you and have loads of information. Good luck on your journey
Do you know what your bone scan results were? Actual figures? Did you have one at the outset to get a baseline?
I had a bone scan 3 months into pred and then again three and a half years later, for most of that time my dose was over 10mg. The scan was essentially unchanged with low level of osteopenia just like you probably. No medication was insisted on either time. Had either shown anything nearing osteoporosis I would have considered the bisphosphonate but as it is I've got through well over 5 years so far on just calcium and vit D. I suppose I need another scan soon.
Some one on one of the forums wrote recently she had contacted the National Osteoporosis Society and spoke to a specialist nurse who explained the scan results to her and the implications.
My main concern with regard to these drugs is firstly the "polypharmacy", all the different drugs we are shoved onto when PMR is diagnosed. Polypharmacy increases the risks of side effects and no-one knows how all the drugs interact anyway (it isn't the same as 1 to 1) and definitely not in the longterm. And bisphosphonates should not be used for more than 5years - so I'd rather save them in case I need them much later in life. I'm far from convinced by the "prevention" concept since I know a few people who've taken them for years and they did nothing. Have you had your calcium and vit D levels checked first of all? Because they don't work if they aren't adequate.
my doc put me on calcios this morning because i had to up my pred to 2 mg. though i havent had any bone scans so far do you know the differance between
calcios and bisphate. does it do the same thing i have never seen a rhumi
either. so i am supposing i am not as bad as some people
Good morning Ladies: I'm new to the forum. Has anyone ever used or heard of Etelvia ?
Hi Rita, it's afternoon here in Belfast, Northern Ireland. To answer your question, no I have never heard of Etelvia. Is it an illness, is it some type of medication? Pat
Cacios are calcium and vit D supplements so that your body has plenty of them to build bone the way it always does.Bone isn't a static substancce, it is constantly being broken down and replaced with new bone. Prednisolone changes that and in some people it can lead to osteopenia or even osteoporosis (osteopenia isn't as bad as osteoporosis).
The bisphosphonates are subastances that slow down the rate at which bone is broken down while allowing the formation of new bone so the density shouldn't reduce and may even increase.
This explains it all:
Atelvia is the brand name for a form of risendronate sodium. It is a bisphosphonate and has most of the side effects of the other bisphosphonates.
In the UK risendronate sodium is used as second line for patients who can't tolerate alendronic acid since it costs slightly more. It is very unlikely that Atelvia is used in the UK as it costs probably 10 times as much as the generic substance!
thanks eileen your very knokledgable on this thing how do you know all this. how do you know
I worked in the NHS in various roles, in the labs where blood tests are done and as a research technician, I have a physiology degree which means I know how to look up the science/pharmacology I don't know anyway and I have worked for many as a medical/science translator so I know how to write things in plain English.
I've had PMR myself for over 10 years. I've been closely involved with the support groups and a research group as an expert patient for some years - and have answered hundreds of questions in that time as well as writing articles for newletters about various aspects of PMR and its treatment. I suppose you could say it's my hobby!
well thank goodness for your hobby is what i say. and thanks for putting so much time on this forum. just while you are there should i stop taking my holland and barret vit d tablets while im on the cacios from doc
If it were me I wouldn't - the calcios give you 800 IU/day vit D. These days many experts say you need at least 2000 IU during the winter. I live in northern Italy which has rather more sun than the UK at any time of year and our local osteoporosis expert says 80% of the locals are deficient in vit D so we should be taking at least 2000 IU. Don't ever double up on the calcium though - too much calcium isn't good for you.
Have you ever had a vit D test done? Having a low vit D level can cause symptoms very like PMR and it should really be checked when they are making the PMR diagnosis.
noot that i know of eileen. unless they check it with my blood test. but on thinking doc wouldnt have given me calcios, unless he is just guessing i he just tells me two blood figures bot dont know if one is vit d
No, the two blood figures he tells you are probably ESR and CRP which are indicators of inflammation in the body and vit D would have to be requested separately. The calcios are standard supplements when you are taking prednisolone as that makes you excrete more calcium in your urine and you need both calcium and vit D to build healthy bones.
o. i. c well i am going to turkey for 5 weeks begining may so that will help with that . . just sat here at the mo with no pain hardly at all so we will see what tomoz brings night noght