Eileen/annual bone building injection, anyinfo welcome please

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.

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.

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, 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.

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.

Thank you I will...

.Just had a letter from the hospital, I have regular colonoscopies, because of my mother dying of bowel cancer, they now don`t deem it necessary!! 

I somehow think money has come into it...yet, I am the age when they say they should be done!.......our poor NHS where is it heading??

Sorry to reply to this after so long....but just had an appointment with my Rheumy (have posted on this) but she has suggested that I have the yearly injection for Osteopenia, how can I find out which one it is before it is done....she says I won`t have side effects!!  How on earth does she know that, I am intolerant of meds, because of havind fibro (20 years) She was in no mood to be challenged....but I did!

I really do wonder where some people put their minds! Any medication can have side effects - one of its side effects is the reason you've been given it in the first place. She;s probably one of the people who doesn't believe fibro exists and that if you tell someone there are no side effects thay won't have any - and actually there is some evidence that waht you don't know...

How can you find out? I don't know. Who is it who will give it you? Not that I would allow anyone to give me anything without knowing what it is - it's called informed consent ...

Hi Linda. I've got FMS and now a year ago I was diagnosed with Osteoporosis, I wonder if there's a link? I'm really suffering with a swollen throat. I've been ill and didn't take my weekly Risedronate tab and for the first time in a year I feel ok and I've been able to eat a 'normal' meal. Do you know if the yearly injection has adverse affects?

Thanks Bebe

 

bebe - this thread is nearly a year old so I don't know if Linda is still around.

Why not start a new thread and ask your question.

Hi bebe,  Was surprised to see this post is still around , like me!  I decided against the injection, I didn`t feel my Dexa readings were high enough for me to suffer more side affects, which you well know we do with Fibromyalgia as well!  I am Osteopenia which is not as bad as you....so if I  were you I would look it up (google or this site)  and decide....and good advice from Eileen as usual...ask on a new post, but remember, not everyone with PMR has Fibro as well.  Sorry I couldn`t have been of more help...good luck!