What happens next?

[Nanaedake]

If you can't tolerate the side effects of Bisphosphonates then what happens next?

Has this happened to anyone and what did you do?

[maryannscadding]

This happened to me and I am now having a zolendronate infusion once a year. So far I am okay.

[Hidden in reply to maryannscadding]

Same for me, I've had two already so the next one might be my last, depending on what my rheumy suggests.

[geris in reply to maryannscadding]

I had Zoledronlic Acid infusions for three years, then a break of two years, I have had one this year and will have another next year. I think it will finish then. I have had no ill effects while having the infusions.

[Nanaedake in reply to geris]

What happens when you finish zoledronic acid? I'm in my 50's.

[Sunseaandsand]

When I came off ibandronate I was given Raloxofine.

After I had my first fracture I became eligible for 2 year of treatment with Forsteo.

Ridiculous you have to have had a fracture or be over 60 for treatment with Forsteo.

As it turned out it was not a positive experience for myself.

Again I had bad side effects.

My own personal experience with bone meds is not a good one.

I have to say though that everyone is different and people do tolerate these drugs.

I have been told that yearly Zoldronate infusion gives the least side effects.

[walk21]

I take strontium ranelate. This is medication taken daily, a powder mixed with water, and two hours away from anything calcium. I have found this OK, and DEXA scans show a little improvement. Doctors are reluctant to prescribe this as there is some alarm about blood clotting, so only for active people with no heart problems. That said, I would recommend it.

[Nanaedake in reply to walk21]

Are you in the UK and is it suitable for postmenopause?

[walk21 in reply to Nanaedake]

Yes, I'm in the UK and was 70something when I started it - now 83. The original make was Protelos, and that was discontinued; another maker Aristo is now producing it. I had to change pharmacies to get it so you may have to be persistent.

[Nanaedake in reply to walk21]

Did you get prescribed via the hospital or your GP?

[walk21 in reply to Nanaedake]

My GP, at my request. I have never been to hospital.

[Nanaedake in reply to walk21]

OK, I will look into it, tha ks.

[geris]

Hi, I am 83 years old and live in New Zealand. I have had 2 Dexa Scans, and the last one showed some improvement. Maybe that is why they are suggesting the possibility of stopping the Zoledronic Acid.

[Nanaedake in reply to geris]

Or is it only possible to take it for a few years?

[Met00]

I tried alendronic acid first, then perservered with risedronate for a year, before stopping meds due to the side effects. I've decided to try a more "natural" route: regular weight-bearing exercise, including with weights and resistance bands, a bone healthy diet that includes lots of calcium, taking high dose Vitamin D (to give me a blood level over 100nmol/litre), and Vit K2-MK7, Vit C, boron, a small amount of magnesium (can't tolerate much, but plenty in diet), zinc, and I drink a mineral water that contains silica. I've no idea if it's making any difference, but I'm a lot fitter and my muscles are getting stronger!

[Nanaedake in reply to Met00]

Hi, @Met00 I've taken risedronate for a year too but the side effects got worse recently so I can't tolerate them any more.

They've referred me to the hospital but I don't think I'll agree to what's on offer. I take all the supplements you mention except for zinc and silica. I also take a B complex and have gone gluten free but don't buy gluten free manufactured food, just natural foods, fruit, etc. How much zinc do you take and where do you get the mineral water with silica?

I've been doing a lot of exercise over the past 18 months that includes weight bearing, resistance and jogging. I walk for at least half an hour every day and use weights at home and at the gym. Like you said, I too feel a lot fitter.

I'm working on my balance with yoga and Zumba but as I work full time I'm time limited. I felt like the risedronate was poisoning me. It was as though a horrible acid was invading my body giving me pain and making me swell up and blistering my tongue.

I've also discovered, now I've stopped the tablets, that according to my fitbit monitoring, the risedronate lowered my heart rate. I'm wondering why? It sounds like a good thing but as my heart rate is already low, I wonder if it was making fluids or blood pool in my lower abdomen and legs causing the aching?

Can I ask what side effects you got?

[Met00 in reply to Nanaedake]

Hello Nanaedake. While I was on risedronate I was constantly ill (including a sinus infection that needed antibiotics), and my IBS gradually got worse and worse. As soon as I stopped the risedronate, my IBS improved dramatically. Because bisphosphonates made me so susceptible to viruses, and because I may need a lot of dental work, I won't consider an injection (which would bypass the stomach so may not aggravate my IBS), and I don't like the potential side effects of other types of meds either! Having said that, I have just bought a strontium citrate supplement (I'd been thinking about strontium risedronate, but it has aspartame in it, which is likely to upset my stomach). I'm having a EchoS scan (like a Dexa scan, but using ultrasound, claimed to be more accurate) in early November, so am delaying starting the strontium until after that, as it can skew the results and I'd like a baseline before starting the strontium.

I take 15mg daily of zinc (I double that if I've been in contact with illness or am fighting an infection) and drink about half a litre a day of Volvic water (70p for 1.5 litre bottle in Tescos; Waitrose sold it for some time at 2 for £1 but I think the offer's ended now).

[Nanaedake in reply to Met00]

So, you can buy strontium citrate over the counter?

[Met00 in reply to Nanaedake]

I've bought mine online, not sure that it's available in shops. Best Naturals, 680mg, 90 for £12.99, though there are 2 tablets per serving, so that would only last 45 days if you take the full dose. I'm planning on taking 1/2 dose initially, then if it suits me, full dose for a few months, then take it from there. I'm not intending on taking full dose long-term, just thought I'd use it to boost my bone strength and density, then take a lower dose as maintenance. It can cause diarrhoea though, so with my dodgy stomach I'm half expecting not to be able to tolerate it!

[Mandynelson]

Im same zolendronate infusion one every three years then Dexa again. This is supposed to strengthen the bones but will depend on your level of oseteoporosis as to whether you will qualify. I was 50 when i got my first one. Have you been offered the monthky injections? I fought to get them at start

[Nanaedake in reply to Mandynelson]

No, I haven't been offered monthly injections. Is zolendronate a Bisphosphonate?

[mandynelson50 in reply to Nanaedake]

theros.org.uk/information-a...

read up on it here, this gives all the options for medication. I couldnt tolerate the oral form of a bisphosphonate due to stomach problems and an increased risk with having barrets oesphagus wasnt worth the risk, the Zolendronate is one but im fine with the infusion.

[ROSmember]

Nanaedake, This question was so helpful to me the side effects of Bisphosphonates is horrendous, it started with Alendronic Acid and now Rise Dronate I have IBS and lactose intolerant, when I first had the side effects I looked at the ingredients and boom it contains Lactose. I’m not sure what to do now, got a drs appt today, I want to come of everything but I don’t think that will happen.

[Nanaedake in reply to ROSmember]

I'm seriously considering taking the diet and exercise pathway along with carefully selected vitamins and minerals, not cheap to buy. But I'll wait and see what the rheumatologist suggests in my Jan appointment and then decide. Its a long time to wait so I'll have time to research and think about it.

[ROSmember in reply to Nanaedake]

I’m being referred to a rheumatologist I’m happy about that but very aware that bisphosphonates are not for me.

[Nanaedake in reply to ROSmember]

Have you had bad side effects fron Alendronate and risedronate and what sort of side effects? I'm worried about the referral because I don't want to be pressured or frightened into anything. I feel like Bisphosphonates are like playing Russian roulette and I'm not a risk taker.

[ROSmember in reply to Nanaedake]

That’s just how I feel, the side effects where feeling sick, dizziness, stomach problems and feeling down right rough so really glad I’m not taking anymore.