No bone meds, what’s next?: Hi everyone, I’m... - Bone Health

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No bone meds, what’s next?

ROSmember
ROSmember
43 Replies

Hi everyone, I’m diagnosed with osteoporosis and I was taking AA and Rise D both of which gave me very bad side effects so the doctor has stopped them and is referring me to a rheumatologist can anyone tell me what they do.

Thank you.

43 Replies
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Met00

I imagine the most likely option would be bisphosphonate injections or infusions, which will bypass the stomach. However, it depends what your side effects were. Have you had a chat with one of the ROS nurses on their helpline, as I'm sure they can talk through the different options with you.

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ROSmember
ROSmember
in reply to Met00

Thank you I will do that Met00.

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Nanaedake

Exactly the same has happened to me. Can I ask what side effects you've had? I'm waiting to see rheumatologist too.

Sorry, just read your response on my previous post saying what your side effects were. You said you felt rough too. Are you still working and are you relatively young?

I'm not sure an infusion or injections would be an improvement for me. It will bypass stomach and avoid swelling and reflux but it won't prevent joint pain. Did you have joint pain?

I feel a lot better not taking the drugs.

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ROSmember
ROSmember
in reply to Nanaedake

Hi Nanaedake I’m 70 and I feel much better with no meds, I’m really worried about what the rheumatologist is going to recommend, I do hope I get a choice and I need to know how bad I am and how long I’ve got before my spine compresses.

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Nanaedake
Nanaedake
in reply to ROSmember

I wonder how much they can actually predict on how fast bone will compress? I guess at least you've got to age 70 before having to face this predicament. I'm in the same situation but working full time and need to carry on. Without the medication things might get worse but I was finding it difficult to function at work with the side effects so there's no solution!

I really don't think infusions will be any better as they won't prevent joint/muscle pain. I'm worried about what the rheumatologist will recommend too but I'm not going to make a snap decision and am determined not to be pressured into anything.

I feel miles better without the meds too.

Did you get useful information from ROS?

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ROSmember
ROSmember
in reply to Nanaedake

The ROS are very helpful told me to go to my doctor which I did so now I have to wait for my appointment with the rheumatologist. Goodness knows how long that will be.

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beenard
beenard
in reply to ROSmember

I was referred to rheumatologist in June and my first appointment is at the end of December.It will be first time so not sure what to expect as I take no meds either.Just following a good diet and supplements and walking.I too would prefer to take no meds ,but will try bisphosphonate if I have too. But will not try any of other meds .Let me know how you get on.

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ROSmember
ROSmember
in reply to beenard

Hi Beenard , are you the same age as me or around 70? I’m taking B12 and calcium - D3 and I too like to walk although I’m not able to do too much at the moment as I broke my ankle in March and it’s still not healed. You let me know too as it looks like you’ll see yours before I see mine. Take care.

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beenard
beenard
in reply to ROSmember

I only take calcium in food. I.e sesame seeds,soya milk, broccoli and other green veg also Kefir and take vitamin D3 andK2 I am only doing short walks at the moment as have a painful leg, doctor doesn’t know cause. I am 69 and diagnosed 12 months ago. I have poor T scores too.

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ROSmember
ROSmember
in reply to beenard

I’m lactose intolerant and I don’t eat meat so I’m afraid my lifestyle maybe partly to blame.

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beenard
beenard
in reply to ROSmember

I don’t eat meat only fish. I’m hoping at my appointment they will do a full blood count to see what I’m low in and my calcium and vitamin d levels.

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Nanaedake
Nanaedake
in reply to ROSmember

Do you know what your vitamin D levels are? Good levels might promote better bone healing. Good vitamin B levels might help as well as vitamin C since collagen needs vit C doesn't it?

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beenard
beenard
in reply to Nanaedake

My last blood test said 75 for vitamin D 2.3 calcium

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Nanaedake
Nanaedake
in reply to beenard

You need the lab range to judge if vitamin D3 levels are good enough. The vitamin D Council recommend something around 100nmol. That is normally around mid-lab range.

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ROSmember
ROSmember
in reply to Nanaedake

No I’ve got no idea but I’m going to ask next time I go to the doctors.

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Nanaedake
Nanaedake
in reply to ROSmember

My apt with rheumatologist is next year so ages to wait. If you're lactose intolerant do you take K2-MK7 or eat natto? Many Japanese people are lactose intolerant but apparently the incidence of osteoporosis among women that eat Natto is low.

Let us know what the rheumatologist says.

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ROSmember
ROSmember
in reply to Nanaedake

No to k2-mk7 or matti in fact I’ve never heard of it.

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Nanaedake
Nanaedake
in reply to ROSmember

Oh, K2-MK7 is one of the co-factors for vitamin D along with magnesium. I think it tells you about it on the vitamin D Council's website. There's a few research papers from Japan too.

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Muddled
Muddled
in reply to Nanaedake

Try Vitamin D3 (softgels in coconut oil if you can get them) with K2 and magnesium glycinate before bed: higher doses are part of a "Vitamin D protocol", of which there are a few variations.

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beenard

Also there’s a talk on BBC4 next Sunday 20th ‘ christines story’ on osteoporosis.ROS APPEAL.

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ROSmember
ROSmember
in reply to beenard

Oh thanks I’ll listen to that what time is it on.

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beenard
beenard
in reply to ROSmember

Sunday 20th 07.54 and 21.25 . Thursday 24th 15.27

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ROSmember
ROSmember
in reply to beenard

Thanks for that.

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beenard
beenard
in reply to ROSmember

It about a lady called Christine and how osteoporosis affects her life, worth a listen.

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ROSmember
ROSmember
in reply to beenard

Thanks

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painting12
painting12
in reply to beenard

Can you please tell me what time the talk is?

I too have osteoporosis of lower back. After 5 years of taking AA abd a DEXA Scan my gp told me no to restart AA as results showed no significant improvement.

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Parijm
Parijm
in reply to painting12

I have taken AA plus calcium D3 for 5 yrs and my recent DEXA scan shows osteoporosis in spine. Currently I await result of blood test of bone markers as suggested by Rheumatologist. I am keen to wean myself off the Prednisolone prescribed for PMR. Currently take3-2.5mg daily. Keen to stop AA too.

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painting12
painting12
in reply to Parijm

Can anyone with osteoporosis be referred to rheumatologist. My gp did not mention anything. Should I request a referral.

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Kaarina
Kaarina
in reply to painting12

I had to ask my GP for a referral and he sent me to an endocrinologist and I received good treatment from him but sadly he retired last year. My GP never offered referring me until I asked.

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painting12
painting12
in reply to beenard

Sorry just seen time below

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Kaarina

'Christines' story is being broadcast on World Osteoporosis Day which is the 20th October each year.

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ROSmember
ROSmember
in reply to Kaarina

Thank you

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milkwoman

AA contains microcrystalline cellulose which, for me, yields similar side effects as you describe. I now avoid any medication or supplement that contains this. I try to go with as pure a medication or supplement as possible.

I don’t know what brand of D-Rise you were taking to know if it also contained microcrystalline cellulose. You don’t say what side effects you experienced with the D-Rise so I don’t know if they were the same or you experienced different ones.

Something to think about. As I have come to realize, sometimes it isn’t the medication that’s the issue but rather, a filler ingredient.

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ROSmember
ROSmember
in reply to milkwoman

Thank you milkwoman that’s very interesting, the side effects where fatigue, dizziness, nausea and stomach problems they did contain lactose with it being such a small amount I didn’t think it would make much difference (as I’m lactose intolerant) but it did.

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Nanaedake
Nanaedake
in reply to ROSmember

That's a good point, my symptoms got worse when the pharmacy changed the product to Milpharm risedronate which contains povidone or crospovidone. Which variety of risedronate were you taking?

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ROSmember
ROSmember
in reply to Nanaedake

It’s called Risedronate sodium by Teva it contains lactose and I’m intolerant to lactose so that was the main problem.

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Nanaedake
Nanaedake
in reply to ROSmember

OK, so it could be the excipients for me too although I'm not lactose intolerant it could be the povidone.

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poemsgalore1

Hi, My treatment is Zoledronate infusions . I have one a year and after my third my rheumy may give me a drug holiday, suggest a change of drugs, or continue as I am. Maybe this will help. theros.org.uk/information-a...

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ROSmember

Thank you poemsgalore1

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tezzatowns

I have osteoporosis because I have an injection of Zoladex once every 3 months for prostrate Cancer. I take no medication that was prescribed. I take a vitamin D3 every day alongside vitamin K2.. just two weeks ago I had blood tests done and one of the was Bone Health. Guess what it came back satisfactorily ! I do drink milk and do eat cheese and exercise “walking “ you don’t kneed drugs just a good diet and exercise

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karmel

I was on AA and am now on Risedronate. I feel my side effects have just been dismissed by each practitioner I have spoken to: physio, dentist and ophthalmologists, and told I must take my op drug. If you take bisphosphonate in tablet form and you have bad side effects you can stop taking them. If you have bad side effects when you have bisphosphonate by injection or infusion you cannot stop -I asked a locum dr about that. As far as I understand there are only other two alternative op drugs Prolia, and HRT, and I think you have to have had the bisphosphonate injection and infusion before these treatments. I have started taking Natural Progesterone as well as other supplements as I have noticed that my hair has started to thin (and my nails) since taking bisphosphonate and I am waivering about stopping . Sorry if I have been so negative, but I personally don't think it helps when you are just told you must take your op drug.

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ROSmember
ROSmember
in reply to karmel

Karmel, thank you for that information it is very helpful.

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Lor7

Just to say I take Raloxifene for OP as well as D3, calcium, walk a lot etc. My latest DEXA scan was slightly worse than last time. However, RH says I could stop meds but they may be helping and it protects against breast cancer too so I shall carry on. I have no intention of taking biophos meds due to possible side effects. .

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