No bone meds, what’s next?

[ROSmember]

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.

[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.

[ROSmember in reply to Met00]

Thank you I will do that Met00.

[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.

[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.

[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?

[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.

[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.

[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.

[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.

[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.

[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.

[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?

[beenard in reply to Nanaedake]

My last blood test said 75 for vitamin D 2.3 calcium

[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.

[ROSmember in reply to Nanaedake]

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

[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.

[ROSmember in reply to Nanaedake]

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

[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.

[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.

[beenard]

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

[ROSmember in reply to beenard]

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

[beenard in reply to ROSmember]

Sunday 20th 07.54 and 21.25 . Thursday 24th 15.27

[ROSmember in reply to beenard]

Thanks for that.

[beenard in reply to ROSmember]

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

[ROSmember in reply to beenard]

Thanks

[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.

[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.

[painting12 in reply to Parijm]

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

[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.

[painting12 in reply to beenard]

Sorry just seen time below

[Kaarina]

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

[ROSmember in reply to Kaarina]

Thank you

[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.

[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.

[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?

[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.

[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.

[Hidden]

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...

[ROSmember]

Thank you poemsgalore1

[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

[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.

[ROSmember in reply to karmel]

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

[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. .

[Hidden]

Hi ROSmember,

Thank you for thinking of me today. The hospital rang this morning changing my appointment from 10.30am to 1.00pm. I was apprehensive as I had read so much about side effects so wasn’t sure what to expect. When arrived at the ward, I was shown to a bed and my BP, temperature and pulse were checked. I had been drinking water before I arrived, and was given a jug of water, and also a cup of tea. The infusion was set up and as it was my first one it was going to take an hour. Once the Aclasta was almost finished, some saline was flushed through the line to make sure all the zolendronic acid was used. I felt fine during all this and after my BP, pulse and temperature were checked again, and seeing as I felt fine, I was allowed to go home. I was given a blood form to have bloods taken for bone profile in two weeks, an appointment for screening at the end of January 2021 and appointment for my second infusion at the beginning of February 2021. It is almost 8 hours since my infusion finished and so far I am feeling fine. I have not needed any paracetamol. I hope this has helped you, as I know your appointment is on the 14th. I will be in touch again to let you know how I go on. So far, the whole thing has been much better than I feared. Kind regards.

[ROSmember in reply to Hidden]

Hi Cook1703

I am so pleased it all went well for you what a relief eh, and thanks to you I’m feeling a lot better now about having mine done so thank you.

I’ve been in a lot of pain this week which wasn’t helped by the fact I had to have a back tooth out ready for my infusion and I still can’t open my mouth properly and my jaws aching, I’m sure it’s all to do with this blasted osteoporosis.

Take care of yourself we’ll talk again. 😊

[Hidden]

Hi, I am sorry to hear you have been in a lot of pain this week as well as having to have a tooth out. I hope things are easing a little today for you.

It is now 24 hours since my infusion and I thought I would let you know how I have been. I slept fairly well last night, but have still been feeling tired today and slightly lethargic, with a slightly fuzzy head feeling. Whether this is due to the infusion or not, I don’t know. I have not had any aches or pains - so far - so have not needed any paracetamol.

I will see how I go over the week-end and let you know how it progresses.

Take care.

[ROSmember in reply to Hidden]

Hi, I’m a lot better today thank you.

I’m so glad that you seem to be coping well with the infusion, I wonder if that feeling your having is due to a bit of anxiety, I’m expecting a fall out from the nerves it gets me every time.

I hope you carry on with no side effects. Take care. 😊

[Hidden]

Hi, I am not sure what I did there but it was meant to be a reply to you, so I will try again.

I am sorry to hear you have been in a lot of pain this week as well as having to have a tooth out. I hope things are easing a little for you today.

It is now 24 hours since my infusion and I thought I would let you know how I have been. I slept fairly well last night, but have still been feeling tired today and slightly lethargic, with a slightly fuzzy head feeling. Whether this is due to the infusion or not, I don’t know. I have not bad any aches or pains - so far - so have not needed any paracetamol.

I will see how I go over the week-end and let you know how it progresses.

Take care.

[Hidden]

Hi, in my 4th day following infusion and I am coping well. I felt tired and not firing on all cylinders over the weekend so have been taking it easy. Just felt like hibernating to be honest. Obviously the weather hasn’t helped. I feel much brighter today and hope this carries on. I will be thinking of you on Friday and hope things go well for you. Please let me know how you get on when you can. Take care

[ROSmember in reply to Hidden]

Hi, sounds like your doing really well, I’m so pleased for you, I think feeling tired is all part of our condition!!

I’m still very nervous about Friday so thank you for your good wishes I’ll let you know how I get on.

Take care.