PMRGCAuk

Bone density medications - an interesting review article

We talk about this all the time and I thought you might like to see this review of bone density medications. What they say agrees with my personal view - although I don't think they discuss adding in steroids which may or may not make a difference (I'm far from convinced they do necessarily).

The first link is the original paper, the second a rather easier to read summary.

journal.frontiersin.org/art...

betterbones.com/bone-drugs/...

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Thanks for posting this. I was prescribed fosamax by my rheumatologist 4 weeks ago as a preventive. Still haven't started taking it yet.🤔 I'm 50 and have always been healthy, hardly take a paracetamol for a headache. Don't like shoving all these tablets in ... steroids I know are doing a wonderful job and I couldn't manage without. I take calcichew and a stomach protection tablet too. I'm really on the fence with fosamax.

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Nothing would induce me to even think about them without the results of a dexascan. I didn't know any better and took 4 alendronic acid/Fosamax tablets then stopped and waited for the dexa. Which was fine. Seven years later, all of them on pred, the t-scores were hardly changed - just on calcium and vit D.

If I were you I would seriously think about the "stomach protection" - I think they are more likely to cause low bone density than the pred.

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Omg really? I take Zoton for my stomach as was advised by my gp who is really good. I'm really just doing what the experts are advising, I had no idea the stomach one could cause problems for my bones!! I have a lot to learn 🙈 Can I just stop taking that one?

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Depends on how long you have been on it. Sometimes stopping them suddenly causes rebound acid production so you should taper them too. The FDA warns that no ant-acid medications such as PPIs (Foton is one) should be taken long term - taken for a short time there is less of a problem. But GPs happily prescribe them for years at a time - and that can lead to low bone density.

Many of us on the forums use yoghurt as a "stomach liner" very successfully to avoid stomach irritation and pred should always be taken with food, in the middle of your breakfast is good if you wait that long to take them.

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Thanks so much PMRpro, really appreciate your reply. I'm on Zoton since middle of July. If I just take one every second day for couple of weeks and then every third and so on? I have live yogurt a few times a week and preds always taken in the middle of breakfast. ( I learned that from here 🤗)

I was afraid to not take what was prescribed for me.

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From the info about yoghurt on this forum I've started having a little when taking my late evening calcium dose, and also when I need aspirin for headache, and it really is helpful.

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Brilliant tips!! Thanks a million😁

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Instead of flying to aspirin for a headache try this:

Spread your fingers through you head and gently tug, do this all over your head.

Each hair has a muscle and the gently tugging relieves pressure.

Bit like Shiatsu.........some good hairdressers when washing your hair, will ask would you like 'shiatsu style' - say yes.

In the booklet, written by patients for patients called Living with PMR and GCA there are pages of tips and tricks.

The booklet was co-written by PMRpro.

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I went to Chinatown (NYC) and had a Shiatsu shampoo for about 15 minutes before my haircut. It was amazing! The haircut was only $40!

Since PMR, I am totally indulgent...weekly massage, personal trainer, Tai Chi, Quigong, 3 months in and it's all about me!!!! Ha! Ha!

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Jinasc Thanks for suggestion but this technique will not rid me of most headaches, which are either migraine or sinus. I think your idea works for tension headaches. I don't get many now, not like younger days. And aspirin works well for me. I do keep otc codeine on hand for the really bad ones and it takes forever to use up smallest available bottle. I do wonder why people seem so afraid of aspirin. It's a lot safer and more effective than acetaminophen.

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Ah, I used feverfew tablets for migraine, but once through the menopause - migraines vanished.

I am please you don't get so many nowadays,

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I took feverfew as well, back in the day. I think it helped. I seem to have some food sensitivities and managing those is also useful. But I can't do much about changes in air pressure, a real trigger.

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You may meet some resistance from your doctor - and if you DO have problems that is a different matter. But I believe taking something "just in case" is not a good thing,

Yes, you aren't alone in thinking you should take all drugs offered - but one of the biggest problems in older patients is what is called polypharmacy, Taking 2 or 3 medications can lead to unexpected interactions - more than that just makes it worse.

There is an assumption that we all teetering on the borders of osteoporosis - and in fact that is far from the truth, Many of us have good bone density because we have had better diets than our mother's generation and we tend to be a lot more active. If you have low bone density then taking something like Fosamax for up to 2 or 3 years is perhaps OK - but I absolutely wouldn't take it longer and only if my bone density was very low.

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Wow excellent advice! I had a dexa scan last week but won't know about results until December when. I have a follow up with rheumatologist. I've made up my mind thanks to this thread, I'm going to wait until I get results from Dexa to see where I stand. I won't be starting fosamax anytime soon.... And It's yogurt all the way to see how it goes. This has been invaluable learning for me, I really had no idea 😳 thanks again 😇

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Anyone interested in a crash course on osteoporosis drugs can add these to the reading list. :D

consumerreports.org/cro/201...

ncbi.nlm.nih.gov/pmc/articl...

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

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I appreciate the information. I have had osteoporosis for 15 years and had every medicine listed in the studies. Since I have been taking Prednisone for PMR, my anxiety about bone loss has increased. I am seeing endocrinologist next week and she wants me to take Reclast since Prolio is not approved by FDA for people on steroids. I had Prolio last year and had 10% increase in bone health.

I have been working on improving strength and balance since PMR diagnosis. I have noticed decrease in balance and sight related to distance since PMR and Pred.

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That's different - whether it helps or not to have denser bones, at least there is a good reason for trying them. But the majority of us are handed it "just in case" - and I believe we should NOT be given such powerful stuff "just in case". Calcium and vit D yes, the rest, not necessarily.

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Even though I need bone drugs, I worry about side effects and risk. I have thyroid disease and hyponatremia as a result of taking diuretics for many years to increase calcium absorption Really struggling with all this since adding PMR to the mix.

It is appalling the doctors recommend these drugs as a preventive measure. Thanks for bringing this out.

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Thanks PMRpro, valuable information

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Perhaps we should be pleased that some docs try to help, no one has offered me a dexa scan or advised vit D or cal. All this I learned while lurking around this forum, many thanks to all of you. A few weeks ago I found a box of lansoprasole gastro-resistant capsules with a note saying these would stop my acid reflux and indigestion. I've never had any problem with this, no discussion just take them. Been on pred since diagnosed with PMR Feb 2016 and GCA May the same year. Bit late to start worrying about my stomach now. The cat is laughing again. 😹

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Almost sounds like they confused you with another patient?

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Possibly but hope not, could be problem. 😫

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I would ask - to check your notes. I had a couple of things on my notes that were fiction!

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Will do, many thanks. Cat laughing again. 😹

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Thanks PMRpro and HeronNs.

Had aZelondronic infusion last Dec and Rheumy insisting on another this year. Never given a Dexa scan as GP said I was too old. Have regretted the first infusion as had bad side effects. Having read some of the articles posted by you I am not going to have another infusion, will just take a chance.

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How about Lansoprazole. I have taking them for years.

Doc says nothing about these but pestering to get off pred fast.

I hade a bone scan and all they tell me. Brittle bones.

Nothing's about density. 😲

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ronzy, you would be wise to make further enquiries about the result of your DEXA bone density scan. A diagnosis of "Brittle bones" is not clear (there is such a thing as brittle bone disease). You need to be informed of the T-score - whether you have osteopenia or osteoporosis.

It sounds as though you are more successful on Lansoprazole than I was. It gave me severe diarrhea and had to be stopped within days of starting. I stuck to eating a live yoghurt with my breakfast each morning before taking the steroids, and this proved successful for me throughout 5-6 years on Pred starting at 40mgs. Due to a misunderstanding between my rheumy and GP, I was never prescribed the recommended calcium plus Vit D for my bones but luckily they stayed intact throughout and even showed an improvement after coming off steroids.

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That's another reason I will not take it, I still have IBS from the first time round, about 12 years ago. Much better now but I still have to be careful what I eat and drink. One glass of red wine is fine, two will have me in the loo half the night. Which is why I get steam coming out of my ears when they prescribe without discussing it first. 😤

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Interesting - i have taken a PPI for more than a decade - a double the usual dose in fact (30mg twice a day) to be effective for 24hrs as GERD runs in my family - all my sibs have it to a varying degree . But Lansoprazole has worked well for me with no obvious side effects so far. Up until I started taking pred - first for PMR then GCA I had 'normal' bone density (age 65 now) - I have now become (mildly) 'osteopenic' - but expect that will improve with my tapering - this only happened after several weeks on high dose pred for GCA.

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I tried really hard at docs to find density. 😬But all I could get out of her was brittle bones 😕

I am a very active person. I consider myself to be quite fit.

Thanks 🍀🍀🍀

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I suspect you have poor bone density and they are patronising you as someone "who wouldn't understand" - brittle bones are a specific thing but the term is often interchanged with osteoporosis. As Celtic says - ask for the "real" report!

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Thanks for the information. I've steered clear of all bone density medications since having an acute reaction to Fosamax after 4 tabs. I've been offered Prolia but feared six months of side effects. I knew the question of bone density meds would come up when I saw my GP after a recent fall but said I'd rather take my chances . My recent Dexa scan showed borderline osteopenia/osteoporosis. Incidentally I saw that someone had been refused a Dexascan at 68. My rheumatologist also said it was age limited but GP put me through for one despite my being 77.

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If you had a reaction it should be posted in very large letters on your notes that you shouldn't be offered any bisphosphonate. Even then it doesn't always stop the medics pushing their drugs!

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Thank you for posting this. Makes me so mad when you read that someone refused dexascan at age 68. I think if that was me I would have one done privately, I believe they are not too costly, something like £50 although this would obviously fluctuate depending on where you live.

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I'm appalled that they assume everyone over 65 has osteoporosis. There is a lady on the forums who is now in her 80s. She also needed a hip replacement and when it was done her surgeon commented on what good bones she had. Another lady, in her late 70s, had a hysterectomy in her 30s I think. She was put on HRT and is still on it - she too has excellent bones. If either had been given AA there could have been problems from TOO dense bones.

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The article confirms my suspicions about taking medication when you don't know if you need it or not or even if it has any benefits. PMR started up for me in July 2013 and I started pred in November of that year. Two of the Rheumatologists I saw (I had 4 in 3 years) seemed desperate to have me take Alendronic Acid. As I researched the side effects and I found it could cause stomach ulcers, I was convinced I wouldn't use it. I had stomach pain on higher doses of pred and when I approached the hospital I was told it was a bug, not side effects of steroids, despite being ill for a month and the problem only disappearing after I dropped by 1mg. When you've had the experience of being turned away and you know you need help, it makes you determined not to put yourself at risk again. One rheumy alleged that my first scan was 'borderline' when the previous one had written to my GP and said it was OK. Why the lie and the pressure to medicate before they examined me to see if there was a problem? My second scan came back as normal so I didn't have to have the difficult discussion about how I was the patient and I have the right to refuse 'treatment'.

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Thanks PMRPro for that very helpful article on bone medications. My GP and two rheumatologists all wanted to put me automatically on Alendronic Acid as soon as I started steroids. Thanks to the information on this forum, I insisted on having a dexa scan (none of the medics were suggesting it). Lo and behold it turns out I have the bones of a 25-year old (positive T-scores all round) and so I was able to go back to the doctors and "justify" my decision to refuse the Alendronic Acid.

The GP also wanted me to take Omeprazole to protect my stomach from the steroids. Again, I decided to wait and see whether I had any stomach problems before starting the omeprazole. Despite taking enteric coated pred, always with natural yoghurt as suggested on this forum, I did start to have stomach problems (niggly sharp pains). However, they have gone away completely since I started taking 120ml of Aloe Vera gel every morning on an empty stomach (before pred and breakfast).

Just thought I'd mention that in case it's helpful for anyone else who is looking to avoid Omeprazole and other PPIs.

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Thanks for the information. I have been following Susan Brown for several years and know people who have been treated by her. She is not a medical doctor and sells supplements and products. An appointment by Skype with her is about $200 for the initial consultation and not covered by insurance.I did not set up the appointment because I believe her interest in helping me is partially self serving ($motivated). But then again, so are doctors!

Adjusting to PMR, retiring from a long career and completely changing my life style because of an auto immune condition has been all I can handle without making another appointment. The research you and others have provided allows me to study options early in the morning when I wait to take Pred at 5:00 am and be my own doctor.

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Susan Brown's website is very helpful. She keeps tabs on latest research and makes that information available to us. You don't have to buy the supplements, etc.

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I watch her videos and keep up with her on Facebook. My sister wants me to make an appointment with her. Someone we know had great results following her recommendations. Between Rheumotologist, endocrinologist, Opthamologist and periodontist, I'm doctored out!

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It wasn't a doctor who wrote the book I found on Vitamin K2. I think medical training may often put blinkers on doctors and it takes someone slightly outside their narrow scope to see something new and useful. Not true of all doctors, of course, I am generalizing.

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Information from various sources can be incorporated in a healthy lifestyle.

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Wow Sandy!

$200 per hour for an initial Skype 'consultation' with anyone sounds too good to be true (although very lucrative for those to can persuade others to buy it)! I would try it, but my moral conscience stops me from exploiting other people, in whatever circumstances, and for whatever reason.

I'm sure you've hit the nail on the head: there are many supposed 'Health / Self Development Gurus' out there who are motivated more by financial gain than helping and informing others. But, Business is not always an ethical endeavour, as many of us know.

Enough said....?

MB :-)

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Business should be an ethical endeavor! That's how I conducted my business and I'm sure that's why I was successful. I am a sceptic and always question motives.

I am grateful for the many selfless people on this site especially the aunties and comics (MB) who have made my life easier with all the unwelcome challenges.

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I really have nothing to add, except my personal experience whilst dealing with GCA.

For the first couple of months, I just took everything (must have been in shock) then looked into everything extra and decided, no I did not want any 'just in cases'. So talked to GP and Consultant and finally they agreed my body, my decision, they also agreed that if and when anything occurred we would then deal with it. I was lucky, both my medics arranged Dexa scans the first one 6 months after being on pred (60mg then slowly down to 40mg) and then every 18 months to two years and the first was 97% bone density and the last one 6 years down the line...........still 97%. I had the aorta and pulmonary check after 2 years as well. They really followed the book.

Meanwhile I had talked to Celtic, and she told me about Lemon Juice for acid reflux, it worked and has worked for many others as well. Mind if I had to have taken one it would have been Zantac (the oldest one now named Ranitidine).

I then met PMRpro and that was one of the best things that ever happened in my life.

I discovered that anti biotics, knocked out the good guys as well as the bad..........so when prescribed antibiotics and the course finished, I headed for Yeo Valley Pro-biotic Organic Yoghurt, (contains L.Acidopolous (good guys) and helped my body to replace the good guys. However after an op, that was not sufficient so I was told about VSL#3. Billions of the good guys in one little packet.........expensive but well worth it.

I did take Yoghurt and a teaspoonful of Manuka Honey (highest UMF I could afford) every morning as well.

I made a friend of my Pharmacist and we checked everything for compatibility, Lara is now a good friend. Once or twice she even called the GP and said 'No this one is not compatible - but this one is and the prescription was changed.

Pharmacists know more about drugs than any other medic. So I never bought any OTC's or Homeopathic remedies, without checking with Lara. Over the duration of the GCA I did use some homeopathic remedies and they worked.

I knew nothing about drugs or GCA but I learned from patients who had also learned much and willingly passed on their experiences, always reminding us that we are all unique, we have much in common, but we are individuals who had or have GCA and PMR or both.

I also found Patient.info and met 4 other people on that forum and Kate Gilbert suggested we meet and see if we could find others and perhaps start up a charity................about a 6 months later 25 people met in London the result of that meeting for all to see and anyone using this forum is a person who has benefited.

So three Charities, support Groups, coffee meet-ups, three forums and more research.

All done on a shoestring and with Volunteers only PMR&GCAuk only has managed to actually employ two part-timers and that took many years.

The following links take you to the 4 websites; all are full of information.

PMR GCA UK

pmrgca.co.uk runs this forum on HU.

PMR-GCA UK North East Region Support

pmr-gca-northeast.org.uk runs tapatalk.com/groups/pmrandgca

PMR&GCA Scotland: pmrandgca.org.uk

PMRGCA Support North West. pmrgcasupport.co.uk

Finally

Patient.info and the direct link to GCA and PMR is:-

patient.info/forums/discuss...

this site is also used by medical professionals and is well administered, it is also the site where 5 people met.

Each and every one of us can benefit from any or all of you becoming members and all though forums are good, there is nothing like meeting people face to face and talking, laughing and learning.

I make no apologies for this long post. I am now nearing my 80th and just wanted to share and encourage, yes an auto-immune illness is daunting, but it can and does go into remission...after 5 years down the line, Celtic and I went into remission and are still there.

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Not the tapatalk forum - the patient.info forum!

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Thanks Eileen, I have amended it.

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It would help if they didn't keep changing the name and the appearance every few months... ;-)

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A huge THANK YOU for all you did and continue to do to pave the way for those of us that are benefitting from your research and experiences of this illness. Bless you!

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I love your long post! Thanks. I couldn't have the confidence to taper, experiment with various forms of exercise, supplements and deal with this uninvited guest or should I say gorilla, without your help and help from so many others. Your work is beyond admirable. I thank you for all you do.

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Thanks!!

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Like insight329 we are all very indebited to the group of you that took the initiative to do something positive and provide initially the means for support and encouragement. Thank you.

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Has anyone tried the COMB strategy that is referenced in the Hindawi report that HeronNS listed? If so, did you have luck with it?

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I certainly didn't follow the protocol outlined in the study. But I did take to heart the message, which is that nutrition really can help, and have been very careful to eat lots of nourishing food, especially vegetables and fermented foods. And I did improve my bone density even though still on pred.

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I am eating sauerkraut every day and it is not tasty! Also added cod liver oil tablets to magnesium,Tumeric and Vitamin Dm. I need 2 glasses of water to down supplements. Not good for someone with hyponatremia. Limit is 32 0z. of liquid per day. Coffee is my big vice! Not easy getting up at 4 for 5:00 am Pred! Decreasing to 20 mg tomorrow. Yeah!

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Now I LOVE sauerkraut! Perhaps not every day but I do like it!

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Really? It was ok on hot dogs but since they have fallen out of favor I eat it straight up. What do you eat it with to cut the tartness? Ice cream? Ha! Ha!

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I do believe you get sauerkraut flavoured icecream...

Yup - pealandeat.wordpress.com/20...

Here we get the choice - milder and heavy duty! I like both but it is always eaten as a side dish here. In Alsace they serve grilled sausages and belly pork with it. Where I live it is kasseler - cured pork similar to ham and slightly smoked.

You can prepare it with small grapes or pieces of apple in it which makes it a lot less tart.

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You bet, HeronNS

Eat well (i.e healthily: good balance of proteins, vits, carbs etc). And... be as active as you can, and try to sleep well!

AND! Keep an eye on your Stress levels and triggers...:-)

MB :-)

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Aren't you full of great tips! Thanks. Now for another issue..I'm having a bit more

Than usual pain from shoulder to elbow and I'm noticing wrist pain which was gone last week. Doing Tai chi and Quigong then have 20-30 minutes with personal trainer. Should I just do leg work or is light upper body work OK?

I think I nam paying for doing too much on the weekend in NYC

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I'd say tai chi and quigong plus 20-30 mins with the personal trainer all at once is a bit much. You will get there - just not yet.

Anything is OK as long as you don't suffer next day - so start small and add on SLOWLY, just 2-3 mins extra each time. With rest days between.

It isn't slow when it works!!!!!!!!

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Just took Tai Chi/Quigong and realized I was done. You are so right! Slow is better. Wish I could get used to the concept!

Thanks for always answering my questions!

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Been there - done that! Got the t-shirt and wrote the book ;-)

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