Deexascan and Pred Query
Posted , 9 users are following.
Hubby had a phone call rom the surgery to make appointment.
Scan results showed bones as being nomal but report accompanied by query/comment that could medication be reviewed in view of "high" pred dosage.
He was diagnosed mid June PMR/GCA and left the asseement unit on 40mg pd.
At time of scan he was on 25 - 22.5mg reduction week and is currently taking 20mg about to star a reduction to 17.5 (admittedly a slower rate than GP was suggesting in September).
He'll be on 15mg by mid Jan at current rate.
Rheumatologist who saw him initiall has unfortunately died in an accident shortly after and he has not had follow-up.
He's comfortable on current pred reduction rate.
Any observations welcome.
0 likes, 19 replies
EileenH jones10939
Posted
I've just answered you over on the other forum but I'll put it here too for others to see if they are interested:
A long term dose of 40mg probably could lead to some problems - although there are a few ladies on the forums who had GCA and not even calcium and vit D supplements whose bone density remained perfectly OK all the way through until they got off pred. It doesn't follow your bones will suffer from pred. I had been on pred for over 7 years at my last dexascan and my bone density had barely changed at all - have only ever taken calcium and vit D. Anyway, he is obviously getting on well with the reduction - and it is though that the greatest changes occur in the first 3 months of pred which he was past by the time he had the scan.
If the bone scan is normal, even if they are suggested politely refuse to take bisphosphonates at present and make sure he takes his calcium and vit D religiously. They have no real side effects - bisphosphonates do and shouldn't be taken for more than 2-3 years because of the (newly identified) long term risks of formation of cracks in the long bones that can then lead to atypical fractures.
At least, that is what I would do. I did it 9 years ago - or I would have been on bisphosphonates totally unnecessarily. No regrets...
karenjaninaz EileenH
Posted
EILEEN,
I wonder if physical activity has a great bearing on bone density as well as genetics while taking pred.
in your case you were skiing ; In my case my reactive airway disease - not responsive at all to steroids and barely to beta agonists inhalers- really impaired my exercise ability. In the past I was hiking yearly in the Alps.
I just started Forteo for my significant hip osteoporosis. I always took the calcium and D supplements but exercise is crucial I believe.
EileenH karenjaninaz
Posted
I think it may be - although skiing isn't generally thought of as weight bearing in the usual way! It IS very significant in youth when we are building bones and then I didn't do much although I was a well built young woman 😉 I was also on HRT for some years although I wasn't post-menopausal then. That may make a difference of course.
I think genetics has a lot to do with it. But I also think that pred is painted blacker than it is when it is for PMR and the like. They dish out PPIs like sweeties when we are on pred, they hand out inhalers for asthma but never say a peep about either impairing bone density.
BettyE jones10939
Posted
I've posted this info before but perhaps worth repeating.
At the age of 81, and when I'd been on pred. for eight years altogether for PMR ( two episodes ), I had a much needed hip replacement and was told by the surgeon that I had "amazing bone density for your age"
The only bone supplement I had had was calceos ( calcium and Vit.D ) as I could not tolerate A.A.
That is no guarantee to others but does show that bone deterioration is not inevitable.
Now in remission and have been for more than five years. No longer take Calceos.
I recently tripped over a hose in the garden and fell heavily onto concrete slabs. Bruised and shaken but no broken bones.
karenjaninaz jones10939
Posted
Another factor in my osteoporosis, in my case was that, before I even knew it was PMR, I had very disabling bilateral hip bursitis. I could hardly walk or sleep on either hip. I had many, many steroid hip injections just to function- most injections on right hip and that's the hip with the lower bone density. I also have been using, since my lung injury from fumes seven years ago, steroid inhalers. I' ve lowered the SYMBICORT to the lowest strength.
jones10939
Posted
Thanks everyone - he has appointment on Monday, I'll post some info then
Anhaga jones10939
Posted
If you haven't already, have a look at the post I made on my own "osteoporosis" journey. It could be helpful to anyone worried about their bone density. I will try to post in a reply to this reply, but if it gets sent for moderation, just google: healthunlocked my osteoporosis journey
Anhaga jones10939
Posted
Have a look at the post I wrote about my "osteoporosis" journey. It may have some useful tips. I will try to post the link but if it doesn't work just google healthunlocked my osteoporosis journey
Anhaga jones10939
Posted
Have a look at the post I wrote about my "osteoporosis" journey. It may have some useful tips. I will try to post the link but if it doesn't work just google healthunlocked my osteoporosis journey
EileenH Anhaga
Posted
https://healthunlocked.com/pmrgcauk/posts/137578304/my-osteoporosis-journey
so it gets here faster!
Anhaga EileenH
Posted
I think it got well and truly posted!
EileenH Anhaga
Posted
😃
Like a couple of other posts of mine - I clicked reply and nothing appeared to happen so I tried again, and again. Then checked!
BettyE EileenH
Posted
Does anyone else get posts classified as new when you have already read them and marked as read? Apparently it may be BT, my server, ( is that the right word? ) but as it only happens on this forum I'm not convinced. Will we ever get this site back to "the good old days"? Has the whole internet got too big for its boots? Anyone stayed in any posh hotels l since 2014?( ref yesterday's news of latest massive data compromise.
Is there any good idea that the human race has not b......d up?
EileenH BettyE
Posted
Probably not!!!!! On both counts.
I think I get stuff classified as new that I have seen - the Moderator insists I don't! Difficult to say as I use both email notifications and the in-page box - and of course I see other posts when I read one.
But the site is being an utter b*%%"! today! And it has been VERY quiet - which I suspect means people are getting bored with the fight...
peggy_56092 BettyE
Posted
I get a notice for the next to last contributor and then, notice for the last some hours later.
lynda62707 BettyE
Posted
BettyE....I'm getting duplicate posts OVER and OVER and have been for days! so annoying!
other than that, the forum seems quiet....I suspect folks are frustrated. I know I am!
one post I started said I had 5 replys and there was only one....this thing is messed up!!
EileenH peggy_56092
Posted
I, on the other hand, have just had an email notice of a post from Lynda - which leads merely to the top of this thread. No post in sight...
ptolemy EileenH
Posted
I have just replied to your post which just hung up, I then refreshed and it has disappeared. I replied to someone else and it has appeared countless times.