After seeing my useless rheumie in May, who wanted me to drop VERY quickly as usual. as is not evan sure if it`s PMR...I made an appointment with GP, and have just been....she said you drop as you want, as long as you want.....whatever works for you...yipee!......but then the bombshell, why have you never taken Alendronic Acid?.....because after 5 years, you will more than likely now get Osteoporosis, if you haven`t already got it!....(had dexa 2 years ago) was ok. Told her of friend who has taken it 5 years, with poor gums etc from taking it, she agreed that`s a possibility, but it`s nowhere near as bad as osteo.....so agreed to take for 1 month to see if I can tolerate it....thoughts please, as I don`t really want to take it, but doctor said I`m not due for another dexa scan yet.... Thanks for any thoughts or experience of this....
Hiya Linda. My doctor said the same to but I find that they give me a stomach upset
Many on this forum reject them for one reason or another and I have done the same. I do not wish to take more pills than I need to. Glad you have a good doctor and have dumped the the rheumie, most of which are a waste of space unless you get a good one.
Im sure those with the knowledge will be along shortly but after reading on here and elsewhere decide not to take it. As i understand it makes your bones brittle so if you fall they snap and most of those who fall dont have Osteoporosis anyway, dentists dont like you either. I got accidently pushed down the stairs recently i am recovering slowly but i never broke anything and i have Osteoporosis in my left hip. Good Luck on this long journey.
As soon as I was put on prednisone, for PMR, I was also given prescription for alendronate sodium 70mg tab (fosamax)...take one per week......along with daily calcium and vit d supplements. Been on it 10 months.....
Linda, glad you have a reasonable GP.
I reacted badly to AA ( breathlessness and wheezing ) after just six doses and just took Calceos. Altogether I was taking Prednisolone for eight years (3 + 5 with a break of three years.). Perhaps I was just very lucky but the surgeon who did my total hip replacement told me I had "amazing bone density" for my age ( 81 at the time ) so osteo porosis is by no means inevitable. Hope you are lucky, too.
Another dexascan is the first requirement. I've been on pred for 8 years with almost no change in bone density. But I had the same discussion with a rheumy who I saw to get healthservice-funded physio and massage here - I'd just had a dexascan and the results are fine but she said she'd need to look at it more carefully to decide what to do. I told her she could spare herself the work, I wouldn't take it. Especially in view of the most recent research from Imperial (I think) - I will wait until I am nearer a low level because after about 2 years of it it seems to start to make brittle bone tissue with microfractures. The FDA have said for some time it shouldn't be used for more than 5 years - and that figure has been falling steadily.
If you are on pred you are entitled to one after 2 years in most areas - it was certainly that a few years ago in the UK. I'd happily pay for my own - a weekend in Southampton and £55 for a scan I think it is. In the NHS facility.
Yes, first thing is an up to date scan. I had a diagnosis of low bone mass early on in my pred journey (aka osteopenia) and dr urged me to take AA, particularly after she went to an osteoporosis workshop! I refused and in the course of one year improved my bone density from -2 to -1.6. Please note that I was on pred the entire time, more than half of the intervening year between scans at a level of 5mg or more, the level at which it's felt pred can have a detrimental effect on bone remodelling. I takethe usual supplements plus Vitamin K2, and do lots of appropriate exercise.
Annaba, Would you mind saying which are the usual supplements you take In addition to the k2?
Hi ricky - just calcium and vitamin D. I also try to make sure I eat a diet which gives me the other micronutrients needed, including boron, magnesium, vitamin C, etc. I take a few other supplements but they are for osteoarthritis (glucosamine, complete E, complete B)
Hi Linda, I have had a GP like that. You have been on steroids over two years so you should take Alendronic Acid. After an argument which I thought I had won, particularly as my Dexascan was brilliant, he let it go, only to go on about it the next time I saw him, so we went through the same argument again. I then had a phone call with him and he tried again. I now go to a different GP, which has solved the problem.
I was on Pred for several months when density scan, showed some less density. I guess that how you state that. I had a once yearly zoledronic acid drip, I had no side effects. I will talk to my Endocrinologist who act as GP, about test before next ski season. I would have another drip, easy and I had no side effects.
Over 11 years on pred. At first doc tried different osteoporosis meds none of which agreed with me. After many years of taking no osteoporosis drugs new rheumy had me try prolia 18 months ago. Worst decision of my life. Still having side effects after just the one injection. Now see a different rheumy. After a bone density exam showed my scores had improved - 0.02- she said no drug was necessary as I am now down to 7mg of pred. Going down very slowly and hoping this time to succeed to at least 5mg where I will stay if I have to.
Yes I agree about another Dexa scan, doc said you had one 2 years ago so not necessary........
The reason I wanted opinions on AA is because a friend of mine had breast cancer 6 years ago (fine now thank goodness) and was put on AA, she has now got gum problems....but her back was painful and bent over when starting AA......she has said the gum problem is worth it compared to the back pain etc she had....and bone density has increased.....now she has to stop AA, because like you say her 5 years is up....
The doctor said to me Adcal is not enough....
I will push again for a Dexa scan, and if not, will look into paying for one....I told her I don`t tolerate meds very well either, another reason I don`t want to take it....she said make sure you are sitting up when you do take it.......watch this space, have prescription, but......
Thank you everyone for your imput....because of my friend I was torn about what to do....but think I know now......
Thanks again for all replies.....
She can't tell whether AdCal is enough - it is all I have ever taken and have spent a lot of time of the last 8 years at above 10mg. The only reliable aid to the decision is a dexascan - and even then some doctors just won't accept it.
Good grief, what will they accept!........once again they have their own agenda.
Had to smile this morning told my daughter-in-law that doctor said I can lower pred at my own pace, she said surely they agree at doctor`s and the hospital how it should be done.....as a mother-in-law kept my mouth shut....but La La Land came to mind! Thanks again....
Thank you, Anhaga
Wouldn't it be nice if the doctors and hospital could dictate how PMR/GCA and other autoimmune diseases will behave????
La-la-land indeed...
It is amazing how those little letters at the end of their names give
them such insight. Did you see the piece on Brexit?
Personally, I decided not to take it. Read all the literature, pros and cons. Know too many people that have had problems with it....major problems. Jaw necrosis. Teeth problems. I am never quite sure if some doctors recommend certain mess because of patient experience, or recommendations from the drug companies. Often difficult to make an independent decision. I would be sure and take the calcium and vitamin D either way. Best to you..
I said somewhere else that I know people with more letters after their name than in it - and they still don't have a clue. My dear spouse included sometimes...
Sorry Michdonn - I watched some of it but didn't have time to see it all. I've not heard of him but that doesn't mean much - however, what I saw seemed a fairly accurate representation thus far! Must find time to watch the rest!