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zoledronic acid severe osteoporosis

Radars profile image
16 Replies

I have been reading a lot more regarding zoledronic acid ,I am thinking of refusing it, there is more negative than positive, people have been feeling good then after the infusion in agony later on,I have got a phone call from endocrine team on 7th Feb, they will probably try and talk me into it,at 74 are the problems worse it,reviews 4 out of 10 for zoledronic acid.

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Radars profile image
Radars
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16 Replies
Nusch profile image
Nusch

Fully understand - same here. Did you get a DEXA scan? TBS? What are your results? Before starting therapy I will also go for a CT 3D scan.

Radars profile image
Radars in reply toNusch

-2.5 and-4.1 lumbar spine

Kaarina profile image
Kaarina

I fully appreciate your reasons to refuse this drug. I would be most reluctant to take any of these drugs offered for OP except strontium ranelate which I was eventually prescribed and was fine on and then it was unfortunately withdrawn. It was brought back eventually but where I live they refused to prescribe this drug anymore.

One has to also remember that those that are on OP drugs and are doing ok do not tend to post on forums saying how great they are on a certain drug as they are busy getting on with their lives.

I think it is a big gamble taking any of the OP drugs as to if they will suit and benefit one as everyone tolerates things differently.

Radars profile image
Radars in reply toKaarina

yeah, if I had the infusion and did ok I would post and help others to feel a bit better, I have been reading a lot not just on here there are more bad cases than good, it puts anybody off,my mind was set to have it but is it worth the gamble.

Seasid profile image
Seasid

Very good question.

MyStar86 profile image
MyStar86

you really are asking this question a lot and I do understand your dilemma. How you actually suffered any fractures? The only reason I had the infusion was due to lots of breaks hips and ribs I wouldn’t of done it otherwise.

I’m sorry my experience wasn’t a positive one for you but in a way I’m glad I had it now because it will do my bones good and if I was on anything else I would of stopped it but my only issue is that I have bowel problems if I didn’t already have those the infusion would of been fine so please don’t go off other’s experiences we are all different like your reasons for osteoporosis is very different to mine. Good luck for next week but you have to go with what you think and feel but I worry that you are going into this worrying already about side effects so you will be focusing on that the whole time post infusion. Yes it’s not nice but neither are broken bones…….take care and I hope you get the answers on here or from your endocrinologist x

Radars profile image
Radars in reply toMyStar86

yeah, after a lot of thought I think it's best to have it with my scores -2.5 -4.1 lumbar spine and vfa at t12 I think I have had a fracture in my back because when I go for my daily walk I get a bit out of breath which is 1of the symptoms, and I have had a chest x-ray and that was ok.

MyStar86 profile image
MyStar86 in reply toRadars

just please go into it positively like I did believe you won’t get the side effects and hopefully you won’t. Honestly I’ve been fine this time just my guts but that’s an ongoing issue and only the mannitol in the infusion that upsets them. Just keep positive thoughts don’t read anymore about side effects and just go with what makes you happy. Keep me posted I’m always here if you need a chat from one who knows the pain of many fractures and is going through the infusions. Take care now stick to your guns and hope for the best x

MyStar86 profile image
MyStar86 in reply toRadars

I wanted to wish toy good luck for today!! Make a list of questions and ensure you cover all of them to help put your mind at ease but go with your gut and I’m sure your endocrinologist will be helpful so fingers crossed for you. Let me know how you get on. Good luck

Radars profile image
Radars in reply toMyStar86

it's a phone call now instead of an appointment, it's not the same as face to face, I take supplements does that effect zoledronic acid.

MyStar86 profile image
MyStar86 in reply toRadars

I agree I prefer to look them in the eye vs a telephone call but it’s better than nothing for now. That’s a good question to ask the endocrinologist as they will know best. I don’t take supplements so I couldn’t say but the endocrinologist will be able to advise you I will have a look for the paperwork that comes with the infusion as that should mention any interactions but it usually only lists medical drugs not supplements as they are not medically recognised but I will send you the link if I can find it. Good luck I hope it goes well

MyStar86 profile image
MyStar86 in reply toRadars

this is what I found:

4.5 Interaction with other medicinal products and other forms of interactionIn clinical studies, zoledronic acid has been administered concomitantly with commonly used anticancer agents, diuretics, antibiotics and analgesics without clinically apparent interactions occurring. Zoledronic acid shows no appreciable binding to plasma proteins and does not inhibit human P450 enzymes in vitro (see section 5.2), but no formal clinical interaction studies have been performed.Caution is advised when bisphosphonates are administered with aminoglycosides, calcitonin or loop diuretics, since these agents may have an additive effect, resulting in a lower serum calcium level for longer periods than required (see section 4.4).Caution is indicated when zoledronic acid is used with other potentially nephrotoxic medicinal products. Attention should also be paid to the possibility of hypomagnesaemia developing during treatment.In multiple myeloma patients, the risk of renal dysfunction may be increased when zoledronic acid is used in combination with thalidomide.Caution is advised when zoledronic acid is administered with anti-angiogenic medicinal products, as an increase in the incidence of ONJ has been observed in patients treated concomitantly with these medicinal products.

Not sure if that helps but that’s the interactions part of the leaflet.

medicines.org.uk/emc/produc...

Radars profile image
Radars in reply toMyStar86

thanks, endocrinologist phoned me,they are arranging for transfusion, I asked him regarding the creatine I am taking to try to put some weight on and the supplements I take he said ok,I said to him this is all because I have no testosterone, I said can't I have a little bit just to get me where I should be and be monitored, he said see your gp to have a word with urologist, anyway that's another story, he asked if my teeth are ok,I have just had a dental crown fitted, it is still sensitive. anyway just wait now to when I start. cheers

MyStar86 profile image
MyStar86 in reply toRadars

I am glad to hear that your call went well and you finally got the answers you had been seeking. It’s good to get others experiences on here but the experts do know best so I’m glad that you feel happier now ylu have spoken to the endocrinologist. I can’t comment on the progesterone being female and I haven’t needed to supplement post hysterectomy but I know they do offer topical testosterone so I hope your gp/ urologist can help on that one.

The infusion does make your teeth more sensitive I’ve noticed that a lot but it doesn’t hurt I’m just aware of it and so salty mouth washes to keep it at bay. If you need the dentist whilst on the infusion make sure you tell them you are on it as they can’t do any work that involves drilling into the gums and must be made aware.

Hope you don’t have to wait too long so you don’t worry too much. Good luck

Zumbablue profile image
Zumbablue

I had one infusion and had such a bad reaction that I refused the second. I now inject daily with teritetrapide (probably not spelt that properly). Apart from gaining fat in the areas I inject I haven’t had any adverse reaction. I would not recommend zoledronic acid.

strongmouse profile image
strongmouse

I tried the tablets which made me sick and have had three,so i 've had yearly infusions of zolendronic acid, Apart from feeling fluey for a day or so afterwards I have had no side effects. My dentist ensured my teeth were in good condition before starting treatment. The worse problems seem to be with those who need it long term ongoing.

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