zolendeonic infusions

[Errp82]

is there anyone on his site that is on this treatment, and if so what side effects have you experienced

[Zumbablue]

This is a negative response. I had one infusion in 2021 and had a very bad reaction. Unable to walk for a short time and very bad joint and muscle pain. I was told that I was very unlucky. However, I decided against a second infusion. I have started a daily injection of Teriparatide. Into second month with no side effects. I hope you get some positive responses as a yearly infusion is more convenient than having to inject every day. Good luck

[Errp82 in reply to Zumbablue]

hi, Many thanks for your reply. I took teriparatide some 10 yrs ago, for 18months and had no side effects. Sadly, one cannot go back on to it a second time. I’m VERY nervous about a yearly infusion, with all the mentioned side effects. I’m currently on alendronic acid. So far, so good.

[jimister]

Hi i don't mean to put you off because everyone is different but i had my first infusion 3 days ago. I was told i might get flu like symptoms. I can honestly say that i have never suffered pain like this in my life every joint and bone is affected. I can barely move. I am on 6hourly painkillers, i have a high temperature. I'm needing help just to get to the bathroom, i have'nt even brushed my hair for 3days. I was an active able bodied person i am now practically disabled. I pray that this is going to improve soon. I had read some horror stories before but i thought they were exaggerating a bit it can't be that bad. I now know people were not exaggerating.I do believe that not everyone suffers as bad as i have but i can only say what has happened to me. I would like to know if anyone has had a second infusion and if they were ok on the second one.

[Zumbablue in reply to jimister]

I had the same reaction. It did improve. However I feel I never regained my previous fitness. I refused the second infusion and am now on daily injections with a Terrossa pen with no side effects.

[FJMG]

I'm waiting to start zolendronate as well. I rang the royal osteo society and had a long chat with a nurse there. That made me less anxious. I've been told to drink plenty of fluids and take painkillers the night before and the morning of the infusion. I've booked a few days off work as well just in case. Fingers crossed.

[Bluebell999]

I too suffered horrendous side effects after my first infusion that lasted for a few days, but was fatigued and achy for a few days more. However, the results have been good and long lasting.

When it came to my second infusion I was naturally apprehensive and undecided for several weeks. I was offered teriparitide injections but as I am on Warfarin, did not fancy the daily bruises and the worry of keeping them at a certain temperature, so with reluctance I had the infusion.

This time though I was more prepared. I drank a lot and I mean A LOT of water the day before and on the day and day after. I asked for the infusion to be slowed down from 15 mins to 30 mins and the nurse was amenable to that. I went straight home and rested.

During the night I woke with a headache and neck ache and had some joint pain which went with ordinary painkillers. I felt "washed out" and achy for a couple of days, but that was all.

The biggest recommendation I can give is to how I am now. My back is so much stronger, I can move more easily, although I still need a frame for walking. My family and friends are amazed at the improvement from bedridden and housebound to getting out and enjoying life more.

Like you, I felt that once something like this is in the body it stays there, not like taking tablets which you can stop if they don't agree with you. The other way of looking at it is, if it is doing you good and giving you a good quality of life why would you not want it to stay in your body?

I hope when the time comes I will be offered it again. Okay, I might be under the weather for a few days but then that is it for another year! No injections, tablets or whatever to remember, all done and dusted, and it continues to work throughout the year which to me is the biggest plus.

[Karana81]

I have written on this before. I was so worried about the side-effects from reclast that it took me a long time to finally do it. It turned out that is was very easy and I had no side-effects. I think it was due to what another person said - I drank a lot of water beforehand, slowed the infusion from 15 minutes to 30 minutes and I believe I took an Advil or Tylenol prophylactively. I won’t know until my next DEXA (March) whether it has any practical effect, but I am glad I gave it a try.

[MCW22]

I have had 2 infusions of this and only suffered a headache for a couple of days after each one. No fractures at all since starting this. My only regret is not starting it sooner. Whilst I was dithering do I or don't I, I had my 3rd spinal fracture. After that I decided to go ahead. Not looked back since.

[FearFracture]

DEXA 2019

lumbar t-score -3.9

DEXA 2021

lumbar t-score -3.9

both hips around -3.1

Endocrinologist put me on Alendronate in January 2020. Took it for approximately 1.5 yrs. Developed digestive tract issues and stopped taking it around July 10, 2021.

Took a short bisphosphonate holiday.

In November 2021 had my 1st zoledronic acid infusion. Followed all the recommendations:

Pre

- Had a complete dental exam, including x-rays, talked w/ my dentist to make sure my oral hlth was great.

- Had bloodwork done to check that my kidneys were 👍🏻

Day of

- Drank plenty of water

- weighed myself so I could give them my exact weight

- took 2 tylenol with plenty of water (DO NOT TAKE NSAIDS)

- made sure the infusion was given over 15 minutes

- continued drinking plenty of water after infusion was given

- took 2 tylenol before going to bed that night with plenty of water.

———————

Side effects minimal so far. 🤞🏻

- within 30 minutes of receiving the infusion, I was literally in my car pulling out of the parking lot, I had some sharp pains in my neck. They weren’t horrible, they were just usual and they didn’t last long, maybe 15 minutes, if that.

- for about a month after the infusion I experienced dry mouth and used biotene

- had a soarish or scratchy throat for about one month.

- Once, a few weeks after the infusion, I experienced one really bizarre event—my entire jaw and lower teeth 🦷 felt like they were tingling—it was like a low electrical current was running through my jaw. It was weird, it made me a little nervous, it didn’t last too long, and it only happened that one time.

—————

I would basically say that the side effects I experienced would not stop me from getting a 2nd infusion, and my endocrinologist’s plan was that I would have 2 infusions, one in 2021 and the second, one year later, in 2022; however, I haven’t made up my mind whether or not I will have another infusion this year. There’s a lot behind my decision and if you want to know why just let me know and I’ll go into more detail.

[Nettyporthole]

I’ve had two of these infusions here in the Netherlands. I followed advice and drank loads of water before. I had no side effects whatsoever. The only fractures I have since had are a broken knee from falling over the dog and I did have one vertebra break when I accidentally let go of the mattress whilst changing the sheets. However, I hurried the full length of the room backwards and hit the wall, so I think that would have happened to anyone!

[strongmouse]

I've had three infusions - one a year over three years - as I couldn't tolerate oral medication. I felt a bit off colour for about 24hours, but no other side effects.

My mother had severe osteoporosis and I am happy to take this infusion along with supplements and bone and muscle exercises to minimise the effects of osteoporosis. Some of the recent exercises I've been doing are to help with my balance and strengthening core muscles (less likely to fall). Such medication wasn't available for my mother. Like one of the others here I made sure to drink plenty of water when I had the infusion.