Have just returned from doctor`s...my dexa results showed Osteopenia, she said the measurement was`nt through, but that is what was advised. In the past three years on pred, have tried daily, weekly, monthly (wretched Bonviva!) and because of having Fibromyagia, could not tolerate these at all. Can just about tolerate Adcal, but doctor says this is not enough. The doctor is referring me to Rheumy, with a view to having a once yearly injection maybe. I am concerned that if I can`t tolerate that....how long will the affects be, once I`ve had it!...if you know what I mean. Is anyone else having this injection? Thanks for any input
Hi Linda, I am a newbie, I just got diagnosed November past. I still haven't seen a rheumy. Someone with more experience will be able to answer your questions. This is a great forum and I would be lost without the good people on it. Good luck on your journey. Regards Pat
Linda
Yes, two or three people have that yearly injection' Densumab' and you are so lucky your GP has not said Alendronic Acid.
Look at the National Osteoporsis website for more information and also on the Osteo thread on this site.
Thanks for that....have tried Alendronic Acid....felt like I was having a heart attack!! Think the injection is called Strontium Ranleate (or thereabouts!) but will look up what you suggest.
Can someone tell me what the benefits of the Densumab injections are. I have not been offered anything like that but before I was diagnosed with PMR and GCA I had been on Prednisone for around 15 years for Lichen Planus which is terrible on one's skin, nails and mucous membranes.
Now after a 3 year break from it I have had to go back on the Pred for the PMR and GCA and my neurologist thinks it may help my Peripheral Neuropathy.
No - there are various versions given by injection. Strontium ranelate is also a bisphosphonate so if it was the bisphosphonate that caused the trouble you might have to go further up the list. There is Forsteo which is a totally different substance and denosumab that is classified as a bisphosphonate but also works in a different way.
Google the National Osteoporosis Society and call their helpline. Someone on another forum said they were wonderfully helpful with their advice and explanation. Make sure you have your facts available - some doctors are very reticent about going to the expensive end of the spectrum and one lady was first given AA when it was totally contraindicated with her history of gastric bleeds and her rheumy is STILL trying to give her that. When she had a hissy fit the doc then offered s/ranelate - which she can't have because of DVTs and cardiac problems in the close family history. Some of them simply DON'T put their brains in gear and read the data sheet in front of them but can get quite stroppy when you say no. Know your facts and your family history - just in case.
In the UK there is a hierarchy which must be worked through in order to get funding - alendronic acid first, str. ranelate second and then you progress as you rule each out because of history or reaction.
If you were on pred you should have been given a dexascan to establish the state of your bones both early on and at intervals while on it (every few years at worst). Now you need one again - and what you need should then be based on the results. Without knowing exactly how good or bad your bone density is no-one can say which you need. If it is good then calcium and vit D may be enough. With a history of 15 years of pred it is more likely to be reduced to some extent. If it is borderline osteoporosis then they will probably start with alendronic acid - for the reasons I gave above but most of the others are similar in effect, just the side effects are different. If it is VERY bad it may need to be Forsteo which is related to parathyroid hormones and activelyincreases the building of new bone - the others just reduce the breakdown of existing bone while bone building continues as normal so Forsteo is more effective. Denosumab is another sort that works in a different way. Both Forsteo and Denosumab cost megabucks in relation to the starting drugs, hence the rules in the UK. It is different if you are in the USA or another healthcare system.
Thank you, I`ll probably have quite a wait for an appointment so will look it all up, and go armed! I`m really am not feeling well at all, don`t think the doctor knows which pain I have...fibro or PMR, so I`m not making myself feel worse, by taking bisphonates, as has happened in the past. Hoping the Rhemy will know what`s going on with both things...I`m on 15mg pred, but feel as you say proper poorly!....thanks again....
Has the 15mg helped at all with the pain?
I have osteopenia - you aren't going to crumble in a heap for waiting for a few months! No-one is saying I need ANYTHING with osteopenia, that is just a stage on the way and most women our age with have bits that are osteopeneic.There isn't much evidence other than very clever marketing that it makes any difference to fracture risk. Women who are osteoporitic don't have broken bones, women who have normal bone density can break a hip. There are other far more significant risk factors that can be eliminated with NO side effects:
Good muscle tone to avoid being wobbly - maybe do tai chi
Good lighting in dark areas, especially with steps
No rugs to slide on hard floors or trip over
Remove cables and other trailing things
Wear shoes not sloppy slippers
Maintain vit D levels
Keep hydrated
Be careful when standing up if you feel dizzy at all.
No side effects - guaranteed!
No, 15mg not helping with the pain now...., and agree with all the above...although with fibro/ME I`m not very mobile, I have calcium rich foods/Adcal.....
As for the 15mg....was on 20mg just before xmas, after I posted on here about blurred vision, was sent by doctor to eye clinic, who put me from 7mg,( pain and fatigue as well had returned)....to 20mg, have reduced down since, SLOWLY might I add, to 15mg, but feel awful.....it was coincidental having the Dexa test. Doctor said today to keep a little longer on 15mg....think she`s leaving it now to the Rheumy to sort.....but in the meantime??
If 15/20mg isn't doing much then the chances of it being PMR do seem less likely. Is it general feeling rubbish or are there specific things?
Feeling like flu....hips/pelvis shoulders lower back, feel painful and weak, like if I move wrong I`ll put something out of joint! That`s the only way to explain it...Doctor had given me a few Tramadol to try, just to get some sleep...
If it were me I think I would tell (tell, not ask) I wanted to have an emergency referral to rheumatology - an urgent referral means not a lot, it just means sooner than routine. It was 12 weeks rather than 18 weeks at one time and someone said somewhere recently it is 6 MONTHS where they are. The current gubmint removed the targets - need I say more!
Have I asked before - where are you?
Norfolk......Didn`t wait too long in 2012, when I first went....will be interested to see, but if it`s a longish wait...I will ring up..no hesitation about that....love the word gubmint, have`nt heard that before!
Eileen would i be ok to go on calcium and vit d tablets. thanks
The only reason for not taking calcium and vit D supplements would be if your calcium level in your blood is high or if you have kidney problems. Your vit D level is more likely to be low than high and the usual supplements are quite low dose anyway. Your doctor should have done most of the common blood tests because of the possibility of PMR, they may not have done a vit D test though. Check with your doctor to be sure about calcium tabs.
many thanks
Eileen, I`m sorry to keep bombarding you with questions...but, feeling worse by the day, very weak and in pain, I`m wondering with my history of not tolerating medication, has it been known for the steroids to have this effect on some people. Prior to lowering from 15mg, down to 9mg last year, I have been on 20mg, one month from December last year, when my dosage was upped, and 15 mg ever since....I have`nt felt like this before......Thank you.
thank you
It may not be PMR and if it isn't PMR then pred won't help. Not everything causing these sort of pains is what we mean by PMR - it is a pest really.
PMR is just the name for a set of symptoms with a lot of different causes which need to be ruled out BEFORE deciding on PMR and a moderate dose of pred having a fairly magic effect sort of confirms that.
Not wanting to scare you but there are a few cancers that cause it too and they MUST be ruled out, especially when the symptoms continue or get worse when on pred. You should have had about a 70% improvement in the symptoms you think might not be fibro if it is PMR. It doesn't sound as if you have. There are other less nasty causes - but I'm rather sceptical that it is PMR to be honest. I could well be wrong - but if you are getting worse not better you need another opinion.
Go back to the doctor - and tell them you want to be sent to hospital for an expert to do some tests. And now, not in months.