PMR, Refusing Bisphosphates and Calcium Spplements

[Omanain]

I was diagnosed with PMR in May this year and am currently on 9mg Prednisolone with instructions from the rheumatologist to decrease by 1mg per month. If I manage to decrease at this rate I will be on 7mg by the time I see him (or the nurse specialist) again.

I have read lots of posts on here and have gone from never having heard of PMR to being quite well informed! So thank you everyone for your contributions to this valuable service.

My GP, under advice from the rheumy prescribed Alendronic Acid, I took two doses and it made me so ill I told him I couldn’t take it, so he prescribed Risedronate Sodium instead. Through my research on here I discovered that this is another bisphosphate. Further reading makes me believe the stuff is likely to do me more harm than good. I don’t have osteoporosis, it was suggested as a preventative. I am not going to take it but should I tell my doctor or save myself a lot of possible argument and just let him believe I am taking it? I I would be grateful for opinions.

I have decided to try and strengthen my bones with supplements so I am taking Calcium 400mg twice a day together with 90mcg K2 and 400mg D3. I also drink about a pint of semi-skimmed milk a day, half a small carton of yogurt and try to eat a bit of cheese every day. I would be grateful for any further suggestions. I am a bit nervous as my mother did have osteoporosis and I nursed her through a couple of crush fractures in her spine which natually gave her a lot of pain.

I also take Thyroxine and Ranitidine so trying to arrange all this pill taking so they don’t interfere with each other is not easy!! I had a bit of a wobble yesterday when I realised this was not a temporary thing but now part of my life for the foreseeable future!!

I am grateful to you all for getting me this far.

[Mstiles]

Hi Omanain,

There will be experts to advise you about biophosphates and bones on here I’m sure.

Have you had a dexascan? That can be ammunition to take to your doctor if your bones aren’t in danger.

It can be a challenge to coordinate medications and supplements!

Are you taking thyroxine for low thyroid? What was your experience with it? I have had thyroid problems too and my doctor has suggested trying thyroxine or natural thyroid. I haven’t gotten any information from doctors about what GCA/PMR do to thyroid function.

[Daisychain12 in reply to Mstiles]

Me too. Thyroid cancer and so it was removed. I’m on thyroxine and Tazac for terrible acid I can’t tolerate the newer drugs.

[Omanain in reply to Mstiles]

I have asked my GP for a dexascan but he says it will not be helpful as it won't predict whether or not the prednisolone will affect my bones!! (I am in the UK -North England) I think he is probably trying to save the cost but as I am not in a position to get one done privately there is not a lot I can do.

My thyroid startet slowing down around 35 years ago (I am now 71) and I have been taking levothyroxine ever since. I take it first thing so it gets about half an hour to absorb before I have a cup of tea or anything.

Actually I never though about how PMR may affect thyroid function. I will try googling it!

[PMRpro Ambassador in reply to Omanain]

Hypothyroid is one of the things that should be ruled out in making the diagnosis in the first place as it too can cause similar symptoms. But they are often interlinked by the HPA axis - the hypothalamus, pituitary and adrenal glands which govern a whole load of hormones and other substances in the body. If one is out of balance - the rest may suffer too.

[piglette in reply to Omanain]

For goodness sake, why does he need to predict, he should want to know what the situation is now! Is he saying you should never have a Dexascan as you cannot predict if you will get osteoporosis? What rubbish. I can’t predict if my house will burn down but I have insurance just in case!

[Omanain in reply to piglette]

It must be an excuse, not a reason!

[Omanain in reply to piglette]

I know, it is ridiculous. I think the problem is that they have to use the machine at a private hospital and this would have to be paid for. I can't think of any other reason for him not wanting it done.

[PMRpro Ambassador in reply to Omanain]

There will be a contract with the NHS. It is the GP trying to save money out of his budget - would be the same if it was a scanner in an NHS facility.

[piglette in reply to piglette]

As the Dexascan lady told me today, there is a shortage of scanners inside the NHS. That might explain why doctors are so averse to letting us have scans.

[Casia in reply to Mstiles]

Hi there. I’ve been in thyroxine for 30 years and am not aware of any side effects but I would not take it or any drug unless it was necessary and there weren’t other options. A friend of mine who theoretically should be on thyroxine has never had to take it - she swears by reiki and the doctor is mystified. It really is worth looking at options and what feels best . I hope that helps.

[podo]

Your ideas on refusing biphosphates is sound. I would insist on a Dexascan first to ascertain the state of your bones. Assuming this is good, I would suggest that good diet and weight bearing excercise would be a good approach. As well as the vitamins you mention, I would also suggest that you look into Magnesium & Vitamin B12. It would be good if GPs would routinely measure blood levels of all these supplements but perhaps that is pie in the sky!

[Omanain in reply to podo]

I will try asking again for a Dexascan at my next appointment. He refused last time and I am not in a position to go privately.

Thanks for the suggestions on supplements. The calcium I am taking also has magnesium but I am lacking B12

[HeronNS in reply to Omanain]

The whole point about a DXA scan early in your treatment is it gives you a baseline - otherwise you will never know if pred has affected you or not.

What you are doing is good. I suggest you add plenty of plant sources of calcium as milk is not the best choice for calcium in the long run. Yoghurt, some cheeses (like Brie) and kefir are better choices than plain milk. But there are some plant powerhouses. You can find good non-dairy sources of calcium from google and they may be better in the long run than too much dairy.

Weightbearing exercise also very important.

[Omanain in reply to HeronNS]

Thanks, I will look into this.

[yogabonnie in reply to HeronNS]

I will be getting another dexa scan in Nov and will find out if the weight vest and TAP dancing have helped (started this prednisone journey ALREADY in osteoporosis) or at least prevented further loss of bone. FINGERS CROSSED .

[Rosedail]

I vote (lol...like I get a vote) that you be straight with your physician about not taking any biphosphates and going with calcium supplements instead. It’s important to have the correct information in your medical file so that your physician(s) now and in the future have access to correct data. If the dairy proves to be too many calories, I’ve heard that leafy dark greens, like kale and spinach, are another way to get calcium in the diet.

[Omanain in reply to Rosedail]

Yes, you are right. I will just have to stand up for myself if he tries bullying me!!

[HeronNS in reply to Rosedail]

NOT spinach. It contains too much phytic acid or something. Kale should be excellent although I have heard some caveats about even that. And broccoli. There are other foods with calcium, like tinned salmon and sardines, if you eat the bones too. Some other greens, I've heard bok choy is good, some nuts and seeds, and even oranges. They all add up.

healthyeating.sfgate.com/bi...

[Omanain in reply to HeronNS]

It's a mine field really!! PMR requires us to be experts in so many things!!!

[yogabonnie in reply to HeronNS]

what? not spinach? I eat spinach. lots of leafy greens...???

[HeronNS in reply to yogabonnie]

Bioavailability of calcium.

healthyeating.sfgate.com/bi...

Spinach has other good things, though.

[Hidden]

Hi, I too decided not to take the biophos stuff.

I take calcium w D and I drink milk every other day it seems.

I like to throw salmon on the skillet and when it is done I stuff the skillet with fresh spinach and boy is that not only easy to make but yummy. Oh and on those occasions I have a vodka gimlet yummy too.

Do tell your doctors because some drug combos are not good. My pharmacist is great he called one time because doc had ordered something that really would not mix well.

🤪My new doctor laughed when she asks if I smoke and I tell her a few nights a week I smoke 2 puffs of pot to sleep. She laughs and says that is fine.

[Casia]

Hi Omanain

Like you I take thyroxine and have coeliac aw well as PMR . Before I got PMR and on my coeliac diagnosis I had a DEXA scan which showed I had some osteoporosis . However a friend of mine who’d had experience of bisohosphonates and had done a lot of research gave me bags of info and i decided not to take them. I have told several doctors with no problem. The good news is I managed to reverse my osteoporosis through exercise, diet and calcium and vitamin D which is really important to absorb the calcium. Now that I’ve been on pred for 18months, though only on 4 , I will request a DEXA but I don’t intend to take any bisohosphonates. I’m advised that the problem with them is that no matter how old you are, your bones do regenerate but apparently there’s evidence that bisohosphonates prevent bone regeneration. I haven’t seen the research and Im not an expert but I do worry that the more drugs you take the more side effects you experience and this is one drug I don’t want to take. Whatever you decide don’t be afraid to tell the doctor as I think it’s important to speak up and it’s your body !

[Omanain in reply to Casia]

That is really good news that you have managed to reverse your osteoporosis with calcium supplements. It helps give me confidence to continue along this path.

The following is another reason not to take alendronic acid. If this is correct even the 2 doses I did take will be a long time leaving my system!

The duration of action of a drug is known as its half life. This is the period of time required for the concentration or amount of drug in the body to be reduced by one-half. We usually consider the half life of a drug in relation to the amount of the drug in plasma.

The elimination half life of prednisone is around 3 to 4 hours. This is the time it takes for your body to reduce the plasma levels by half.

It usually takes around 5.5 half lives for a drug to be completely eliminated from your system

After absorption in the bone, alendronate has an estimated terminal elimination half-life of 10 years.

[PMRpro Ambassador in reply to Omanain]

That is probably very underestimated - it just means they found it after 10 years of it being used. Now it will probably be 15 years - as it is about that long since they started to use it widely.

[edmonton in reply to Omanain]

Hello all, I have PMR since March 2017 and take Adcal. I had a Dexa scan which showed slight Osteopoenia (havnt got my score). A locum GP said I should take Alendronic Acid but I declined. I saw a different Rheumatologist in July who was very angry that I had declined it (which was mainly due to what I'd read on this site. He said I was putting myself at risk and said I could have an alternative AA treatment intravenously which took 15 minutes to go in and which lasted a year. He said it would give me flu like symptoms for a week. Has anybody else had this?

[PMRpro Ambassador in reply to edmonton]

Which one? I'd ask him if he'd had it. And point out it is MY risk - not his.

They are all beginning to show feet of clay - I would consider them if my bone density were low, not otherwise.

[piglette in reply to Casia]

Hi Casia, how long ago did you have your last Dexascan? In my area in U.K. they won’t do them more often than every three years. I was talking to the Dexascan lady and she said the NHS did not have that many machines. In my area they have one per county and I live in quite a heavily populated area. I actually helped fund raise for our Dexascan, so I feel that I am getting my money back.

[Casia in reply to piglette]

Hi piglette, I think NICE guidelines are every 2 years for those at risk but not entirely sure. When I got diagnosed with coeliac that was the recommendation and I assume with PMR you’re at risk so I would have thought you should be getting one more frequently. They certainly shouldn’t be advising people to take bisphosphinates without knowing the DEXA score . I think they especially owe you one if you fund raised for the scanner!

[piglette in reply to Casia]

They say in my area three years minimum. Mind you they probably could not fit everyone in every two years. I helped fundraise for our Dexascan, the lady who organised the fundraising was not allowed one, I think she made a big fuss in the end.

[powerwalk]

When I was first prescribed Prednisone - just over two years go - the Rheumatologist prescribed that Alendronic Acid also - I was not happy about having to take it as I was having enough issues with the pred - so after looking into it - I decided I would stick with the calcium only. I asked to be sent for a Dexa Scan and she said she would send me for that AFTER I had finished the pred completely - which to me seemed nuts. Why would you not check someone's bones first and see what state they are in. You can get supplements with all you need in one tablet if thats the route you decide to go on - it has K2, magnesium and calcium, Vitamin D etc., so you are not taking a bunch of stuff - you can get them in the health food shops. Anyway I got my GP to send me for a Dexa after about a year and it was fine. Obviously we are all different. Good luck with your decision. Best wishes.

[PMRpro Ambassador]

Only one question: have you had a dexascan and what were the t-scores?

Don't agree to take a bisphosphonate "just in case" - only if there is strong evidence you need it.

[Omanain in reply to PMRpro]

No, my GP will not agree to me having one and I can't afford go go privately.

[PMRpro Ambassador in reply to Omanain]

Try a different GP? It is part of the BSR guidelines for the management of patients with PMR - it is probably part of guidelines for any patient expected to be on long term pred.

[Hidden]

I was also advised to take bisphosphonates plus Vit D and calcium supplement as prevention. No detail scan, plus D and calcium are fine. Looked into Alendronic and decided it's toxic. It's horrendous, so to,d GP I decided not to take it. My medical records are therefore correct.

I bought this :

amazon.co.uk/Your-Bones-Pre...

Someone here recommended, PMRPro maybe. It's absolutely packed with info and details about which foodstuff contains what and the amount. I recommend it. It's easy to understand and the info is practical and positive.

[Omanain]

Thanks, I will look into the book. I will also stand up to my GP!!