AA and osteoporosis

[Marlenec]

I have 2 friends who have osteoporosis and take AA, one having injections for at least 6 years. Does anyone know if they will be at risk, or is AA still the best/only medication for them? Having read the new research I'm not any wiser.

Thank you.

[PMRpro Ambassador]

I have just posted this extract from the conclusion of a review of the potential harms of bisphosphonates:

ti.ubc.ca/2012/06/14/a-syst...

"In secondary prevention, the small benefits of bisphosphonates likely outweigh the harms during the first 3 years of therapy, but harms likely outweigh benefits for durations greater than 3 years."

This was from 2012 - but I think it is still valid and I know the FDA have changed their recommendations to say patients should have a drug holiday after 3 years on bisphosphonates.

Of course there is an added problem. The data sheet says very clearly that before they are used the patient's calcium and vit D status should be reviewed and adjust if they were not optimal. If their vit D level is low - the stuff doesn't work. Celtic on this forum has written about her aunt who had been on bisphosphonates for years - and still developed spinal fracture. Forteo has worked - it has a different mechanism.

Part of the trouble is that the drug company used to say this was a totally safe drug you could give to everybody and it would save everyone from fractured hips...

[Marlenec in reply to PMRpro]

Thank you Pmrpro. Will give them this info then may discuss with their doctors. It's that para you quoted that is crucial.

Once again thank you, your posts along with some others are so valuable .

[HeronNS in reply to Marlenec]

My personal opinion is that people, whether or not they take the drugs, should do everything they can to improve their bone health through nutrition, including a few supplements, and appropriate exercise. I think one day it will be considered negligent of doctors not to advise patients about this, beyond the usual "take calcium and Vitamin D". What makes our bones healthier will also improve our general health and wellbeing, so there's nothing to lose!

[Marlenec in reply to HeronNS]

Thank you Heron - yes I agree and as we can learn more about nutrition and exercise these days put it all to good use. Without the internet I would not be as healthy as I am today despite PMR!

[piglette in reply to Marlenec]

I think pred had quite an effect on my interest in nutrition. I am now terribly aware and check other people’s grocery buys at the shops. Recently I have had a nasty blister that got infected and has created a sort of shark bite in my leg. I was told to eat lots of protein which really does seem to have worked. So with any luck I won’t need plastic surgery.

[Jan200 in reply to HeronNS]

You speak a lot of common sense! Thanks HeronNS

[PMRpro Ambassador in reply to Marlenec]

Heron has quoted this link on the other thread:

hindawi.com/journals/jeph/2...

I think it is particularly applicable here if these ladies are fairly fit - jumping jacks or skipping for impact exercise isn't something I could consider! On the other hand - I'm overweight so I have that as a positive when walking, especially downstairs! In the past I have suggested that even if you can't walk UP the stairs, walking down them has great benefit for your bones!

[Marlenec in reply to PMRpro]

Thank you again, I know these ladies from Yoga class and they both use sticks and have problems here even though all the positions, exercises etc. are very gentle and we can all just push ourselves as far as we want. We also have tea and biscuits afterwards! As for the skipping - I'll have a try at that as I can now walk 5miles plus most days around the house or garden and hoolahoop sometimes. I bought a Fitbit when I refused to take AA after 4 months of it, and it's made me lose one and half stones (now 9st) and feel much fitter with the steps.

[PMRpro Ambassador in reply to Marlenec]

As I mentioned - Heron walks with a weighted vest so if you are walking that sort of distance that may be all you need to not have to do star jumps!

And

health.harvard.edu/womens-h...

[Marlenec in reply to PMRpro]

Don't know if I'd cope with that as I have dreadful shoulder ache all the time and try not to lift or carry anything heavier than the kettle!

[piglette in reply to Marlenec]

I even have trouble with a full kettle!

[Marlenec in reply to piglette]

not good is it! We'll get there though. Hope you were joking about plastic surgery! I had an infected insect bite on holiday in Italy which left a hole in my leg but it eventually healed without a scar. Hope you'll be ok.

[piglette in reply to Marlenec]

I am afraid I am not joking about the plastic surgery. I had a bruise on my leg after an operation which developed a small blister which got bigger and bigger. The nurses all came to gawp at it. When I got home the district nurse decided to burst the blister which then became infected. It was 14cm long and I had to have an operation to debride the wound which had a lot of necrotic tissue. The plastic surgeon said that I would need plastic surgery eventually. I currently have a district nurse in three times a week. They said eat protein and the wound is now 11 cm and is looking pretty healthy. They have been using silver and also manuka honey. I have been taking photos, someone said I should have them as my Christmas card. They are really gory. Most people refuse to look at them, it is a change from holiday snaps though.

[PMRpro Ambassador in reply to piglette]

Oooooh - i'd look!!!!!

[Marlenec in reply to piglette]

Ooh Piglette that's really nasty and must still be very painful - 11 cm is a big wound. Hope everything goes well for you. Have a lovely Christmas and better health for 2018! x

[piglette in reply to Marlenec]

When I get the dressing changed I cannot believe that the wound is part of me except it hurts. All the professionals keep saying “I have never seen anything like it before”.

[GerriMc in reply to piglette]

Sounds awful. Great that the protein worked. Manuka honey is amazing. I saw Noel, the Supervet use it on a dog’s paw where one of the pads had rotted away from an infection. It not only healed the wound but the pad began to grow back.

[piglette in reply to GerriMc]

Good old Manuka honey!

[Hidden in reply to piglette]

I bought one of those kettle cradle things. I fill with plastic jug so still get a little lifting exercise. Just don't have to buy new kettle when I inevitably drop it..like ALL my glasses😲

[borednow in reply to piglette]

For that very reason I invested in a new small kettle - it's an igenix, holds 1 litre, lights up a lovely blue colour and has opened up a whole new world to me. Not sure whether to be happy or extremely sad!!

[Hidden in reply to borednow]

😂😂😂

[piglette in reply to borednow]

I was given my kettle about twenty years ago, it was a throw out from a friend after closing down her business! No lights. It is extremely fast though. Probably illegal nowadays.

[borednow in reply to piglette]

20 years ????!!!! No worries there then - if the PMR doesn't get you then the kettle might!!

[PMRpro Ambassador in reply to Marlenec]

The vest doesn't use your arms. But if you have such shoulder problems you ought to get your doctor to check for bursitis or some other problem. Or you need a bit more pred.

[Marlenec in reply to PMRpro]

I told my rheumy 2 weeks ago about my shoulders and he said to take pain-killers, and as I can raise my arms above my head and don't need help turning over in bed must reduce the pred faster. I used the dead slow method to get down from 12mg to 5mg, which worked very well, but now really struggling to get from 41/2 to 4. After 2 or 3 days even on dead slow I am a different person - no energy to do any steps, shoulder pain too severe and almost flu-like feeling, I just sit. But he said as I was 71 I should have no problem at all getting off Pred and wrote out treatment card alternating 3 and 4 mg daily for 1 month, then 3mg for 1 month and so on.

However I'll take your advice and see a GP, see if I can get better help there.

Thank you again for your time and expertise PMRpro. I did mention this site to him and said I had learnt so much from contributors on here. He poopooed it and said that "people who post on these sites have their own agendas". I don't swear but .............!!!

[Hidden in reply to Marlenec]

Presumably medical profession and pharma have no agenda at all. 😂

[PMRpro Ambassador in reply to Marlenec]

Marlenec: I suggest you find yourself a more realistic doctor - why on earth should it be easier to get of pred just because you are 71???? Wonder if that is because you are older or younger?

Funny - I just met a renowned PMR/GCA expert who has just started a proper regional specialist rheumatology department at my local hospital and HE was delighted to meet someone associated with the UK charities and forums as he worked with Dasgupta for 6 months. It is unusual since we are in Italy...

Yes - I DO have my own agenda: it is to provide founded information for other people with PMR so they have the confidence to stand up to bullies. And he sounds as if he qualifies.

You are showing typical signs of adrenal insufficiency with the increasing fatigue and feeling unwell, as well as probably being on the verge of a flare. I described what happens to me at 5mg and he said if it happens again he will arrange a synacthen test. He commented it is "very rare" - but looked amazed when I said that on the forums alone I know 4 patients, at least, with adrenal insufficiency out of maybe a thousand patients.

[Marlenec in reply to PMRpro]

Thank you Pmrpro I will ask my GP for a sync then test and I shall stay on my 41/2gm until L feel ready to reducefurther. Thank you for your help you are so kind to take the time to Give your expertise.

[karools16 in reply to Marlenec]

What a cheek, Marlenec! What does age 71 got to do with coming off Pred. I will be 71 in Feb, and still on Pred, for GCA, after 12 years.Wonder what he'd say about that?

[HeronNS in reply to Marlenec]

The thing about the vest, at least the one I have, is that the weight is distributed evenly over your torso, no drag like you get from hauling a single heavy weight around, or wearing your average backpack with weight in it. There are metal ingots weighing about 2 oz each and you gradually add these, starting at a level which doesn't cause any discomfort and never adding more than you can manage as time goes by. I've been very slow because I keep forgetting to wear it so have only added three pounds over the past two years but I resolve to do better from now on. I did notice this, however: I wore it all the time when I first got it, through my first pred winter, then not during the summer, or not much, and when I started using it again in the autumn it was very much easier to carry, so my bones had slowly been building up in response to the previous winter's challenge!

osteopenia3.com/Weight-vest...

[Marlenec in reply to HeronNS]

Thank you Heron. The vest is something to think about . Just boughttwo 1lb weight to build arm strength .

[PMRpro Ambassador in reply to Marlenec]

Cheaper to use a couple of 500ml water bottles - you can start with a quarter full and keep adding water to increase the weight.

[piglette in reply to HeronNS]

Dear Heron, I am just so impressed. I get exhausted by just watching the Strongest Man on television!

[HeronNS in reply to piglette]

The point I'm trying to make is that the vest is comfortable. The only time it feels heavy to me is when I'm taking it off its hanger or putting it back, not when it's on me.

[piglette in reply to HeronNS]

I would get exhausted watching you taking the vest off its hanger!

[HeronNS in reply to piglette]

But, Piglette, you wouldn't be watching me. You'd be using a vest with maybe a pound or two in it to start, even less if your back is in horrible condition.... Surely you can lift a brick of butter? One pound.

[piglette in reply to HeronNS]

It is watching others do exercise that exhausts me!

[HeronNS in reply to piglette]

I've walked for over 9000 steps so far today, half of it in the rain, with my Nordic poles and a backpack. I bought a new pair of winter boots on the way home which, fortunately, fit into the backpack. Now I'm home and too tired to do anything except play on the Internet, and wish I had a robotic vacuum cleaner.... It's not even 4 pm here yet, and that has been my day.... Please don't think of me as some sort of paragon. Just a person terrified of becoming a frail little old lady.

[piglette in reply to HeronNS]

I feel even more tired! I have just been clearing up and decided that I am never going to wear my cross country ski outfit again!

[HeronNS in reply to piglette]

Do I detect a whiff of depression? I'm afraid to go there any more myself. There are so many kinds of loss which require a period of grieving, and it can seem so, I don't know, self-centered? selfish? to grieve something like loss of an ability, loss of youthful looks, health, work, etc., yet we have to allow ourselves time to accept and heal and move on. I'm still grieving the loss of the life I had when I worked and pre-PMR, but after three years I think I begin to see a light glowing on the horizon.

[Hidden in reply to HeronNS]

It was about 3 years after having to stop work that I finally passed through grieving process. Sadly I was still in mid 4os. It took a long time to accept that I had to pace myself. That I would never ride my bike (balance and strenght) or do a 26 mile walk in mid summer's day. I cant even sit for 2 hours in cinema so had to give my monthly pass up. But eventually your goals and activities change and you accept new normal and push against it a tiny bit to stay mobile and flexible as possible. Oh and get net flux so you can sit walk or lay down whilst watching films.

[PMRpro Ambassador in reply to piglette]

"... I am never going to wear my cross country ski outfit again"

Can't imagine why not...

[piglette in reply to PMRpro]

Not enough snow!

[PMRpro Ambassador in reply to piglette]

Come and visit - we've got plenty this year...

[piglette in reply to PMRpro]

Just putting on my cross country ski outfit!

[PMRpro Ambassador in reply to piglette]

It's a glorious day - just like the first day I came to this area - deep blue sky, brilliant sunshine, a few fluffy clouds and a load of snow. Blue, whilte and gold...

Bit parky though at -8C at 10.30am. Though that is a decided improvement on the -15C overnight!