Zoledronic Acid

[creditcrunchie]

I have to make a decision re having a yearly infusion of the above medication for osteoporosis. I have for many years taken ilandronic and alendronic orally but my bone density showed no improvement at the half way treatment check up (I believe this was possibly due to mix ups on my part and the GP putting one tablet not two on my prescription....which I know makes me sound rather stupid but being monthly tablet it all went pear shaped,). Anyhow I am a little nervous about having the infusion because there are so many potential side effects and into the mix my impaired immune system through scleroderma I think you can understand why I am asking if anyone had an opinion or experience. The Osteoporosis Consultant is not an easy person to talk to and couldn't wait to push me into the community which handles the infusions. Thanks in anticipation of any opinions as it's decision making time.

[Juliem61]

Hi, i've had 3 treatments of Zolentonic, at 6 monthly intervals for cancer and have been absolutely fine. Go go for it! All the best JM

[Gmargs]

I’ll be following this to see what people say who have had ZA. My Rheumatologist and GP are considering this for me compared with other treatments for osteoporosis. They don’t want to start it just yet as some current issues I have need to settle down first.

I was told and read that if you were to get any side effects they are usually worse on the the first infusion (But not necessarily severe, eg., can be flu like symptoms, aches and pains, maybe nauseous but you may not get any effects). And each year those effects are less likely or less severe than the last.

I also read that they only treat with ZA for up to 3 years (not sure what happens after 3 years - guess if there is no improvement they look at other treatments?). And of course they will monitor not only your osteoporosis but other bodily functions as well while on ZA.

I have a good relationship with my medical team, they work together (not physically but in correspondence) to plan and monitor my treatment. Of course they are only two of the many medical and disciplinary team I see. As other Scleroderma sufferers would know.

Hope you get some helpful answers

Marie

[creditcrunchie in reply to Gmargs]

Thanks for replies so far. I hadn’t realised this medication was used in cancer treatment or is it because the cancer treatment has a negative effect on the bones? It is a question of shall I be gung ho or do a bit more research!! I guess as I am in the latter part of the seventies age band I reflect on the side effects in case they are long term .

[Halfwayuphill]

Hi, I’ve had 5 infusions over 6 years now on the recommendation of my rheumatologist. No side effects. I did read It’s important to drink masses of water as you are then unlikely to have side effects. I take a big bottle in with me and drink during it. I’m waiting to have another dexa as it’s nearly 2 years since my last but this is postponed as the Royal Free dealing with Covid. The one thing I would be careful of is make sure you have your teeth checked and looked after well before the infusion and afterwards. I was unlucky and had to have root canal work shortly after the infusion. The specialist dentist had to do a very difficult job on a tooth they would normally remove and its still there. The danger is you are at risk of a nasty disease of the jaw if you have an extraction after the infusion. It is rare though and usually patients who’ve had multiple infusions after chemotherapy.

It’s much better than having that difficult to swallow pill when you have scleroderma GI issues.

Hope it goes well

[creditcrunchie in reply to Halfwayuphill]

Thank you for all the information which I have really taken on board and I feel more reassured now. I have never had any of the side effects with the tablets so i think I will probably follow the infusion method. I was aware of dental issues as I had a massive dental job which involved a long period of no osteoporosis treatment. Again thank you for your reply.