PMRGCAuk
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To take or not to take that is the question ?

I have PMR/GCA and am currently tapering from 40mg of prednisolone, now at 32.5mg. Rheumatologist has recommended and prescribed Bisphosfonate (spelling?) in weekly tablet form. Osteoporosis is prevalent in my family, my mother age 78 has it as do her sisters, so I understand the rational, but on researching this drug it terrifies me. I had a routine bone scan before I started with PMR and was told it was ‘normal’ 18 months ago (age 55). I didn’t ask much more as I thought I would have another scan 5 years hence. I’m having another bone scan in 3 months time when I will have been on steroids for 6 months by then. I’m conflicted as to whether to wait for those results before I start on the weekly tablet.

Do any of you have any experience of taking this drug?

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Hi Sheffield-Karey, I was given a prescription for Alendronic Acid, but it scared the crap out of me! I was on 80 mg of Pred and did not need another terrifying drug with crazy side effects, so I refused to take it. However, my scan was normal and there is no history of Osteoporosis in my family.

I am eating tons of prunes, yogurt, cheese, dried figs, Brazil nuts and I eat a can of sardines every day and keeping my fingers crossed.

Good luck to you... it's a tough decision. I'm sure other much more experienced than I, will have more helpful suggestions.

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Thank you for your reply. And thank goodness I found this forum, it’s been a lifeline , some of the decisions we are making on our future health are huge and way out of our knowledge, well mine at least. Doctors say one thing and Rheumatologist say another and we’re in the middle trying to make decisions with PMR brain fog, whilst still reeling from the diagnosis. 😳

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Yes! ...and the fog seems to be never ending.

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Like you, I researched these wonder drugs and backed off a bit horrified. There are negative longitudinal studies that shed doubt on their effectiveness for preventing bone fractures too. I was put under an awful lot of pressure to take Alendronic Acid eg “ you will end up in a wheelchair” etc. My DEXA scan came back showing that “ I have the bones of a 30 year old”. So for now I take Adcal, have a good diet and take exercise. My mum was bent over with Osteoporosis in her 70s. She also had a poor diet in her childhood.

This decision has to be yours, based on your research. Our beleaguered GPs seem to think they are the great answer. Not me I’m afraid, I’d rather take my chances with what nature has plonked on me. In your case, I would be inclined to wait to see if there has been a serious decline in your bone density before taking this medication.

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Good advice Sheffield Jane. And I think that’s the way I’m leaning ... I should have asked more questions after the first bone scan, we live and learn. thank you

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It really didn't agree with me. I got terrible hip and groin pain the 5 times I took it in the first 12 months of pred. I finally got a scan 12month in and was all A OK for and just recommneded adcal. I had already invested in an otc calcium /vitd3 so took that anyway but now on prescription.

My sister is on alendronic acid for another auto immune condition and I worry because it is a few years into it. Have mentioned she should take a break but no response. My dad took it because he took pred and steroids in his nebulizer for asthma and lung scarring. It was scary seeing him lose height in last few years and turn from man who did manual labour and had good physique into Gollum.

It is a hard decision when OP runs in your family, but All you can do is do the research and make considered and informed decision. 🌻

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I’m taking adcal too, gone from barely taking paracetamols, to a great big bag full of tablets. Heyho I have to keep in mind we are lucky to have options.

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It is disappointing to end up with a bag full of pills. I thank my lucky stars that we Have a wonky and creaky but good health system*. I wouldn't be able to afford my meds. It seems every other year brings a new condition. Dry eyes so far this year 😂

*I notice that at my gp surgery around 100 appointments a month are missed and not cancelled. Then I wonder why there is never a free appt!😲

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Hi,

Have your next scan, and then decide.

Contrary to others I took AA for 4 years (needed it) with no problem whatsoever. Maybe I was just lucky.

But I would say check if you actually require, if not, then why add in another drug?

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Thanks for your reply. I think that’s where I’m leaning ...

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I’d wait for the next scan. 3 months is neither here nor there in the great scheme of things. Then base your decision on fact and not ‘maybe’.

During those 3 months, make a concentrated effort to increase your weight bearing exercise, walk a little further, take up tap dancing! 😉 (ask yogabonnie!) thereby increasing your stability and balance which are essential for preventing falls. This way you reduce your risk of fractures.

My GP and rheum insisted I took AA, but I declined until dexa scan which proved my bones are in great condition, so they’ve stopped nagging now. However it took some 10 months to get a script for calcium and VitD3 from my GP. The ones he prescribed had artificial sweeteners in, so I can’t take. (Make me very nauseous) he says he can’t find anything prescribable that doesn’t have sweeteners, but that I ‘probably don’t need them’. How the goal-posts move!!! I shall get some from Holland and Barret as I did in the initial 10 months!

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It’s all very confusing but I’m getting the gist of it ....🙄

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Yes, early days are a bit like wading through treacle! It is all very confusing, especially when some GP’s give very odd advice 🙄 I remember feeling very dispirited and low, not helped as I felt my GP and I were at odds with each other (still do! I avoid seeing him now LOL) it does become clearer as you stabilise and take back control. Stick with the forum, some great brains here, the best advice, and plenty of soggy shoulders which have been cried on! Sometimes we just need that understanding.

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The optimum time to do the first dexascan is felt to be about 3 months after starting pred. Just because our mother's generation had osteoporosis does not mean we will have it - our diet and activity levels have been very different.

I had been on pred, albeit at PMR doses, for over 7 years at my last dexascan and the t-scores have still barely moved from the first one. I take calcium and vit D and nothing else. I walk for half an hour most days and always do the stairs (especially going down, good bone building activity).

Heron is the expert on how to build bone with diet, exercise and supplements.

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I was prescribed AA, but at the advice of the forum, I asked for the results of my Dexa scan. (i’m in the Osteopenia range.). I did some research and proposed the COMB Protocol along with increased walking to my doctor instead of the AA. Fortunately, he agreed. (To be honest, I’m not following it to the letter. I found a supplement that has most of the vitamins/minerals in it, just not all. I’m hoping the one that wasn’t included isn’t the magic bullet.)

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bjr.boneandjoint.org.uk/con...

You may also find this article of interest.

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Do NOT start without dexa scan and I say do not start even if you have gone to osteopenia and osteoporosis. There are many side effects with AA and I would read everything about it before making that decision. Also you can only be on it for 3 years. .. so 3 years now? or 3 years at 85? or 90? great book on Amazon... Your Bones: How You Can Prevent Osteoporosis and Have Strong Bones for Life―Naturally Paperback – March 16, 2013

by Lara Pizzorno (Author),‎ Jonathan V. Wright M.D. (Contributor)

4.5 out of 5 stars 136 customer reviews

GOOD luck. I know it is all confusing... but read everything you can. This forum is a godsend!!!! and there is always Yoga and tap dancing and walking and weigh bearing exercise! I maintain.... with NO proof. thin bones might be flexible bones and not necessarily brittle bones! Do balance exercises. and Do everything thing you can to NOT FALL!!!! use railings and crampons..or grip boots (Icebug bug grip boots) !!!

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My mom had osteoporosis. One year I bought these for her as part of her birthday present. She did use them whenever she ventured out. (She probably thought that cement would do more damage than carpet?) I remember her asking, "Do these make my hips look big?"

nos.org.uk/media/1603/hip-p...

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wow. I love those. I am definitely keeping them in mind!!!! what a great idea. Amazon has little pants they fit into... not sure they come with them or not..but I will research and if my osteoporosis gets worse I'll get them....at least when I cross country ski or skate!!! good idea! thanks!

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Ha. soon I am going to be covered in GEAR. weight vest. hip protectors. helmets tap shoes and of course that 10 pound layer of extra fat I've gained!!!

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Laughing! And still laughing. Yep, you’re gonna be quite the fashionista for the PMRGCA brand. Just picturing you in all of that as you tap going down the street makes me laugh.

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Fortunately, she never fell so I have no idea if effective. But we laughed that they were the most expensive (and yet least attractive) undies that she owned.

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I cannot tell you how much I loved that she said Do these make my hips look big? I miss my mom... and from what you say.. you miss yours too!! good moms!

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She was a good mom and I do miss her. One of my favorite memories: She would bring one of my pre-teen nieces to have a girls weekend once a year. We’d shop, eat, and play cards. Alot of cards. And my mom was really competitive. She got up to go to the restroom and my neice and I stacked the deck so when it was dealt my mom got the deal of a lifetime. Then we sat back to watch her expression. She usually had a great poker face but her eyes bugging out told all. It didn’t take her long to figure out that she’d been set-up because we couldn’t hold back the snickering. I can still hear her saying, “You girls”. Thanks for letting me share that memory!

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Loved that story!!

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The others have said it all. I'd be inclined to wait and see what your scan reveals. You should be able to ask for the results of the previous scan - they will be on your record and will be needed to compare with the next one.

I do take a bisphosphonate drug because I was diagnosed with osteoporosis 9 months after starting pred and not being given any calcium and vitaminD supplements - I'll not go into the details! I was also prescribed Lansoprazole, which isn't good for bone health.

I now take calcium and vitamin D daily as well as 5 prunes EVERY day - they give them to astronauts to protect their bones in the weightless environment. Like mamici1 I include dairy, nuts and seeds and oily fish, with and without the bones.

It might be an idea to have your blood vitamin D checked - mine was very low and GP is checking it annually.

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Thank you for your reply. I did not know that about Lansoprazole. I’m taking that too. 🙄. I will ask about switching to back to ,Omerprazole or is that the same ? Dear me it’s a minefield.

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Any antacid medication will affect the amount of calcium you absorb so all the PPIs are the same. No real evidence was found in a small study that ranitidine/Zantac has a similar effect. But it is recommended that all patients taking PPIs should take calcium citrate as the acidity of the stomach doesn't affect absorbing it in the same way as calcium carbonate which is what we are usually given.

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