Vitamin Regimen - PMR

I was started on a biphosphonate 2 years ago (followed instructions to not drink anything for 30 minutes following ) - within hours I had the worst throat pain I'd ever experienced. It was like razor blades cutting my throat ( I have never had a drug allergy and was completely healthy prior to PMR). I had a throat swab done, convinced I had strep throat - negative. Long story short, I checked side effects and severe throat pain was one.  Now Biphophonates are considered my only drug allergy. I do Prolia injections twice yearly with absolutely no side effects. 

whitefishbay, have you had a DEXA bone density scan that has shown thinning of your bones (Osteoporosis)?  If not then do request one before taking bisphosphonates - you may not need them.  They cannot be taken for more than five years without a recommended break anyway, so best to reserve them until you really need them....hopefully never!  If your bones show normal bone density at present, then the Calcium + Vit D supplement should be sufficient.  I took steroids for five and a half years starting at a high 40mg dose without any bone protection whatsoever, and my bones remained fine.  I did, however, include plenty of calcium in my diet by way of milk, 'live' probiotic yoghurt, cheese etc and oily fish three times a week.  I also walked each day which is the best weight-bearing exercise for our bones. 

Mrs O,

I have not had a DEXA bone density scan in fact I am waiting to see a rheumatologist (my previous one cancelled my long awaited diagnosis apt).  I will definitely ask my new rheumy @ this.  I will buy calcium + vit D supplements also aim to eat lots of calcium in my diet and also walk. Thanks so much for the advice. 

whitefishbay, the reason the DEXA scan is recommended before automatically taking bisphosphonates is because the medication carries a rare but serious side effect of osteonecrosis of the jawbone and hip bone, hence the recommendation that came out a few years ago to have a break from the treatment after five years.

If a DEXA scan shows that we have bone thinning, then of course treatment with bisphosphonates or similar is required but only then and not before.

Rather than wait for your rheumy appointment, can you not talk to your GP about the recommendations for a DEXA scan.....and sooner rather than later (I'n ot sure how long you've been on Pred)??

At one stage my bones moved slightly into Osteopenia (the stage before Osteoporosis) but no treatment was suggested or thought necesssary at the time, and since coming off steroids, the density has moved into the completely normal range again. 

Only been on pred since 29.3 (3 weeks).

Oh early days on steroids then - hopefully your rheumy appointment will come through shortly and be perfect timing for the DEXA, having given time to see whether the steroids are having any bone-thinning effect but, of course, it won't tell you whether or not it was there originally.  

Just to add in - don't take anyone's word that you MUST take bisphosphonates or you will crumble, it is rubbish. I had a dexascan done a couple of months after starting pred and another about 4 years later after being on pred at or above about 10mg for much of that time. There was no change in my bone density at all and is at a level no-one in the UK or here would consider as needing anything if I weren't on pred. MrsO is another - not even calcium and vit D - and there are others.

I've taken calcium and vit D faithfully every day - and 4 weeks of alendronic acid at the start until I read up about it and discussed it with my then GP. He too was of the opinion it was a good idea when you were showing a fall in bone density while taking pred but otherwise watchful waiting was a far better option - because bisphosphonates have not yet been shown to be totally innocent when given to otherwise healthy patients longterm "just in case". They have side effects too, some of them very nasty.

On another forum there is one lady who developed shinsplints after 2 years on AA and one who has bilateral fractured femurs (both thigh bones broken, no fall involved, it just happened) and the specialist is positive it is due to the 18 months of alendronic acid she had been on. Many dentists will not work on patients on or who have been taking AA.

Would any doctor give  AA to you just in case?   My

doctor put me on it but not just in case.  I have osteoporosis.

Since I'm 79 yo don't want to risk back fractures at this

age.   This trip down senior lane is getting more complicated

all the time....

Someone I know, who got PMR when I did, was put on Methotrexate and AA immediately along with the steroids. No Dexascan.

I do believe that AA was recommended for vulnerable people eg over 65s as a matter of course in the Rheumy Guidelines. I am not sure if that has been changed or not. If I had been offered AA when I first got PMR I would have taken it as I would not have known to question it.

I guess that depends on what the term "vunerable" means.

Just because you're over 65?  Osteopenia?  Can't see that.

I'm not medically trained but can't see giving this med unless

dexa was done and definitely showed osteoporosis.  Pays

to stay on top of your health issues if you possibly can.

Never stop asking questions........

It's sort of historical and very clever marketing. To cut a long story VERY short:

The company that developed Fosamax (the original alendronic acid) did a "study" where they gave doctors the not-dexascan things that I think Boots and other quacks use to offer "bone-density heel assessments" which are totally useless. They purported to show that giving Fosamax prevented bone density loss in older patients and claimed it was perfectly safe. So you could give it to your older ladies (in particular) and it would protect them from having hip fractures - which are potentially very risky. The doctors to whom this was preached were easily convinced so when they have patients on long-term steroid it is automatically handed out as "preventative medicine".

In the guidelines it says to automatically hand out calcium and vit D and send the patient for a dexascan. Patients who are "likely" to have low bone density (post-menopausal and over 65) don't need the dexascan and should be given alendronic acid, as should people who fail the dexascan criteria. Which is tripe - I know several older ladies (late 70s, in their 80s) whose bone density is fine. There is also no direct correlation between low bone density and fractures - but that is also a long story so I'll not go there.

The only reliable way is do the dexascan and review the situation. It's like statins - brilliant marketing...

Faye, based on the guidelines, if you are over 65 you are vulnerable! I think Eileen describes it all very well. The art of marketing! 

I totally agree with dexa and review the situation.....  No correlation between low bone density and fractures?   Wonder what docs would judge need for AA on if not low bone density.?  As I said in another blog

my sister couldn't take the Fossamax and wound up with 7 fractures

in her back........hard to know what to do.  I guess you find a doctor

you trust and go with his judgment.  Let's face it....it's all a

crap shoot!

My rhuemy prescribed AA for me. I'm a 59 yo male. When I said that I was unhappy starting it because of the side effects she said they give it because the Pred can cause bone density problems. When I told her that I hadn't had a Dexascan yet she told me that they didn't do the scan. They worry about us taking Pred but have no worries dishing out AA with no test at all.

They don't "do" the scan....what does that mean?.  They don't

have the equipment or not the medics that order it?  Your

call but I wouldn't take it without the dexa.  Blows me away

how many different opinions the doctors have from practice

to practice.  Makes you wonder where these people go

to medical school.

I took it from what she said that they don't bother with it although I didn't ask for clarification. Unfortunately, I'm the sort of person who will come up with the perfect question to ask 2 hours after I've left the hospital. I had already decided not to take it at all, unless a scan or something showed that I needed it.

I'll give her the benefit of the doubt - maybe her hospital didn't do the scan or her department didn't - but it is available all over the UK, albeit occasionally with a bit of a wait. And recommended for patients on pred.

Couldn't agree more about the reluctance to check you need it first and handing out like sweeties. 

My comment about lack of correlation is that many people with low bone density don't have fractures, others with "perfect" bone density do. The line where you go from osteopenia into osteoporosis was set arbitrarily - there were no studies I know of that it was based on. The incidence of fatal hip fractures was already falling when AA was introduced and there are a LOT of other things that are even more important and which don't have any side effects. Yes a form of it has been in use for 50 years - in a very small population of patients with Paget's disease I think. So a lot of doctors say it is absolutely safe on that basis. Except it was a different substance used in a very different illness - and you only ever find out the REAL rate of side effects when something is used for a long time in a lot of people, which isn't the case during clinical trials.