Fosamax While Taking Pred

[BuddyBearF]

My Rheumy told me I need to take Fosamax to prevent Osteoporosis while I'm taking Prednisone. Do others take this or just take Calcium, Vitamin D3, Vitamin K2 Supplements?

[piglette]

I would only take Fosamax if someone could prove to me I needed it. I would insist on a Dexascan first. I would not take it as a prophylaxis.

[BuddyBearF in reply to piglette]

Thank you. That was my reaction as well. I have a bone density test scheduled for next month and asked if I could wait until then to see if I needed to take the drug, but he said it's part of the protocol if I'm taking more than 5mg Pred. I have it...won't take it until after the scan results come back.

[piglette in reply to BuddyBearF]

He is saying it is part of the tick off list!

[BuddyBearF in reply to piglette]

That and getting me off Pred ASAP, even if it's what I really need to be taking. Seeking another opinion next month and hoping to get a better Dr. who knows PMR!

[piglette in reply to BuddyBearF]

sounds like my GP, we have an on-going argument about it.

[Seacat30 in reply to BuddyBearF]

Nobody has told me to take it and I have been on more than 5mg of pred.

[piglette in reply to Seacat30]

You are lucky.

[nallufl24]

my dexa scan was normal so I only took calcium and vitamin D from 60 mg pred to 0

[piglette in reply to nallufl24]

My Dexascan makes my bones look like stainless steel, my GP still thinks I should take a bisphosphonates as it is recommended. .

[WearyLucy in reply to piglette]

do you take it though?

[piglette in reply to WearyLucy]

No. Every time I talk to him it comes up. It has been going on for over four years now. Each time I think I have won!!

[PMRpro Ambassador]

Have you had a dexascan to see the state of your bones?

I started taking pred 13+ years ago and got the standard handout including alendronic acid (Fosamax). I took 4 tablets before stopping, with another GP's approval, until the results of the dexascan were seen. They were fine, as have the subsequent 3 scans so I have never taken any more. My bone density has hardly changed. I took calcium/vit D supplements at first but the calcium caused bladder problems and I dropped the calcium, making sure my dietary calcium was good. I take 4000 IU vit D, far more than the supplements.

[BuddyBearF in reply to PMRpro]

My scan is scheduled for next month. The doctor talked about how there is a delay and I will only be scanned once every 2 years, so I should just take it. I'd rather take supplements unless the scan tells me otherwise. Just wanted to see what others were doing. I figured it was more about him covering himself by prescribing it than it helping me.

[jinasc]

Ask him 'which protocol' because I would like to know where to find it - unless someone else has seen it and can tell me where it is. .

I was given the usual supplements, then before I took them asked a few questions. AA no thank you until I have a scan.

GCA and on 60mg and six months later Dexa Scan - bones 97% - scans every two years, bones never moved. Remission 5 years years later . Bones still the same.

The guidelines say you should have Dexa scan 6 months into taking Pred. Then scans every two years. So grab that one in November. Sooner the better, then ask him to book another one for November 2024.

So over the years when newcomers came along, always told them - ask for a full spectrum blood test and a Dexa Scan before you take add ons.

The whole population do not get enough sunshine as they get older to keep the Vit D in a good range. Vit D Deficiency is quite common and it causes aches and pains just like PMR .

In the old days, flour was fortified with Vit D - for some reason this was dropped in the UK in, as far as I remember in the late 50's or 60's.

I did get Vit D Deficiency and high doses, 40,000 units per day for one month then 20,000 units per day for the second month. I still take Vit D every day just like PMRpro.

BTW: AA is not the only option, if you do need to take bone protection go to the Royal National Osteoporosis website and look at all the options. There is a yearly one.

[BuddyBearF in reply to jinasc]

Very helpful. Thank you!

[Missus835]

I'm taking 3000 IU of Vitamin D3 daily, along with K2 and Calcium, Vitamin C (2000 mg), B12. Rheumie prescribed Risedronate (a bisphosphonate which so irritates my digestive system, I took only twice). It's a once-per-week medication to "prevent osteoporisis in post menopausal women". I had a bone density scan about one month ago and never got the results from the Rheumie nor can I without going through some channels. Her nursing desk said "she would definitely call you if there was a problem". I'm hoping she's not thinking I'm taking Risedronate. I have blood work done monthly, but never know what the CRP is. Mammogram which I presume was normal. No follow up whatsoever. So, as Pro suggests, I will continue with the supplements, from which there are no adverse side effects.

[FRnina]

I've been taking Fosomax since onset of PMR/GCA 2017. Have also taken Vit. D and dietary calcium very conscientiously. Also I live in a sunny part of France and am outdoors in it as much as possible. I had a bone density scan in 2017 and then 3 years later which showed a deterioration: am now in the osteoporosis range. I'm due for my third scan in a couple of weeks. I will be off Fosomax anyway because it's not efficacious after 5 years I'm told by the specialist here. There are other things to take in its place if my bone density is worse at my third scan. Also my GP here says that after 75 years old (I'm now 79), 50% come into the osteoporosis range: so there's age-related lack of bone density also to take into consideration.

I wonder if genetics also play a part? I've been physically active (though not a sport fanatic) from about 35 onwards so I do wonder why I'm not more strong-boned. Maybe I'm in the unlucky 50% with age-related osteoporosis. (Lucky Jinasc, bones never changed!).

Like most, I follow the advice of the specialist but I'm tremendously grateful for everyone on this forum. They bring up questions that I can subsequently discuss at consultations. My particular specialist is very open for information exchange in that respect.

[Miacaro45]

When I was diagnosed with GCA 2 years ago, my rheumatologist asked me to get a bone density scan. Turned out that I had osteopenia. He suggested that I take Fosamax because he thought that I would get off of the Prednisone quickly. Well, that never happened and between the GCA and PMR I am still on 17 mg of Prednisone. I am diligent about exercise and taking Calcium with K2 and D3. I just switched over to Prolia every 6 months. I hate taking all these things. It is a double edge sword. You are damned if you do and damned if you don’t. Pick your poison!

[PMRpro Ambassador in reply to Miacaro45]

Osteopenia is not a medical condition - it just means your bone density is lower than it was when you were about 30 and virtually all of us have osteopenia at our age. It is a range that goes from almost normal to almost osteoporosis - I was osteopeneic, I still am bit not much lower bone density than before pred. It is all a matter of degree.

[PQXZT]

I take Alendronic Acid/ Fosamax. I was already taking it as I have osteopenia and am also taking Letrozole, to prevent recurrence of breast cancer, which also weakens the bones.

[67Blue]

Please, please , push for answers. Foolishly end of 2020 when diagnosed with GCA/PMR, I never queried AA just took what I was given, but when I finally joined this site did cringe when I read about other peoples experiences. Asked for a dexa scan and the very overworked Rhumy said "good point". Obviously scans were not on his agenda. After months of waiting (we was, and still are in difficult times in Ipswich hospital) I was told I was down as a no show in NOV, and I would have to wait another 4-6 weeks, finally had it in May. Chased the results only to be told they didn't have time to send them to me, but the lady did say I would have been contacted if there was a problem, (standard for this area) she said she wasn't qualified and probably shouldn't tell me but it all looked Ok to her just carry on as i had been doing. In September (4 months after the dexa scan) I received a letter from Rhumy. saying they had just reviewed my recernt!!!!! Dexa scan results and my bones were consistent to other 75 year olds so if i was down to 5 mg pred I could leave AA off. So all those months of AA I shouldn't have had. I had queried it with my Dr and he had said I would be on them for several months after I finished my pred as it would still be in my body and to just get off those steroids!!!! He has not been helpful and I do have my doubts as to his knowledge of our diseases

[montebello]

Hmmm... my GP in the states told me there's absolutely no evidence that calcium and vitamin D supplements help bone loss, and yet here i read that many are taking these supplements.

[DorsetLady PMRGCAuk volunteer in reply to montebello]

Strange then that experts in Rheumatology world recommend it their guidelines….

[PMRpro Ambassador in reply to montebello]

They possibly don't in healthy people - but a study was done in patients on pred where calcium and vit D seemed to be protective. Pred makes you lose more calcium than usual - topping up the level floating around makes it more likely the bones will capture enough to maintain density.

There is also an opinion that taking calcium supplements is actually dangerous, increasing the risk of cardiac problems. Again, that applies to healthy younger women who aren't taking vit D - those who took vit D too had fewer problems. And again, with the best will in the world, we aren't normal healthy.

[BuddyBearF in reply to PMRpro]

One more thought to add to the conversation. My dietician neice who works UVA hospital says they test young people with osteoporosis for Celiac disease. She says oftentimes people will have gluten intolerance or Celiac and not know. Over the years their bodies have not absorbed enough calcium because of this condition.

[Noosat]

I looked at Mayo clinic and harvard school of medecine and decided against taking it

[BuddyBearF in reply to Noosat]

what did those sources say?

[BabyRuby1]

I was diagnosed with osteoporosis 2 years ago. I refused fosimax. There are wonderful other natural supplements I take…I now have osteopenia not osteoporosis thanks to natural supplement for bone building…oh I also have PMR since July 2021

[BuddyBearF in reply to BabyRuby1]

which supplements are you taking?

[Yorkshireusa]

hi before my mothers GCA diagnosis she was diagnosed with osteoporosis and took fosamax for 5 yrs and stopped. The doc said you must stop, it’s done it’s job if you carry on your bones will be worse for it.. Years later following her recent GCA diagnosis she was asked to go back on it by the GCA doc and she refused until she had a dexascan- which showed she was all good. She has been put off taking it again ad she’s convinced too much of it makes your bones “like crisp packets” and she knows too many elderly ladies suffering the consequences. Best wishes

[Tiredofpmr555]

I have been in the osteopenia range since age 65 and now drifting into the osteopenic numbers in my hips after being on prednisone for three years. All doctors have been pushing meds and I have always refused because of the possible negative side affects that could happen. I am now 87 and finally off of predisone and still keeping my fingers crossed that I made the right decision. I still feel that unless one has had problems with breaks and fractures staying away from Fosamax, Prolia and the rest is the best way to go. Not many old people are going to have the bones of a thirty year old anyway so who says that trying to artificially get them is the way to go?.

[Broseley]

I had a dexa scan as part of the investigations into my hip pain in 2021. They found osteopenia so I was put on AA. This was before PMR/GCA diagnosis. I have been told recently when I enquired, that I will be on AA for the rest of my life, with a break after 5 years. So I will have to get used to those weekly early morning standing for 30 minutes routines!!

[DorsetLady PMRGCAuk volunteer in reply to Broseley]

You don’t have to stand -sitting is perfectly fine..it lying down that’s a no,no….

I always sat down and read or did crossword … and unless your osteopenia has turned into osteoporosis, once you are off Pred you can stop AA.

[Broseley in reply to DorsetLady]

thanks, I know, but I'm scared to sit down as I automatically slouch!

[PMRpro Ambassador in reply to Broseley]

I imagine pretty well all of us are osteopeneic - I refuse to say "have osteopenia", it is NOT a disease state. It is a question of degree - it ranges from not quite normal to not quite odteoporosis, there is a lot inbetween and if your t-score is better than -1.5 then you do not need to be on AA, calcium and vit D is more often than not enough.

[Broseley in reply to PMRpro]

my highest reading was NoF T= -1.1.

[PMRpro Ambassador in reply to Broseley]

Had it been -1.0 it would have been normal. -2.5 is osteoporosis. You wouldn't catch me even THINKING about taking AA at that.

[Broseley in reply to PMRpro]

It's probably because I smoke and drink.

[PMRpro Ambassador in reply to Broseley]

But you did that before pred I assume.

[Broseley in reply to PMRpro]

Yes!

[PMRpro Ambassador in reply to Broseley]

Didn't have much effect then?

[Broseley in reply to PMRpro]

Doesn't the effect increase once you're over 50?

[PMRpro Ambassador in reply to Broseley]

Possibly - but when you had the dexascan your results were still pretty good ...

[Broseley in reply to PMRpro]

Thanks, I'll try and get another one. The GP said 2 year intervals. Hopefully the CalciD and Vit K2 have had an effect!