Zoledronate

[FJMG]

I've just got my DEXA results: Lumbar spine -3 and Hip - 2.9. I am 62. I have been recommended Zoledronate infusions. I am wondering if anyone has any experience with these? Up till now I have just been taking Adcal-D and Vit K, along with exercise. As my scan is worse than it was 3 years ago (-2.6 then) I guess I need to go onto medication. Not happy about it though, and quite frankly, very scared about side effects.

[FearFracture]

If this will be the 1st time you will be taking meds for osteoporosis, why isn’t your doctor starting with oral bisphosphonates? Do you have digestive tract issues?

[FJMG in reply to FearFracture]

Yes, I have hiatal hernia and acid reflux. I tried biophosphanates for 3 weeks and had trouble swallowing and developed a cough.

[FearFracture in reply to FJMG]

A little about me.

- 4’11” (haven’t lost height 😊)

- currently, 53 and weight approximately 107 lbs

- for most of my life my weight was between 95-101 lbs, there were times when my weight dipped as low as 92 lbs—this is important because weight effects bone density.

- extremely early menopause for unknown reason. did not do HRT.

- 1st DEXA in 2019, at age 50 showed lumbar spine t-score of -3.9 and hips were slightly better.

- I have no fragility fractures

- rarely drink, have never been a smoker

- diagnosed w/ Hashimoto’s hypothyroidism in 2017/take 75 mcg of levothyroxine daily

In January 2020, my endocrinologist told me my bones were horrible and although I asked about natural means to reverse bone loss, he pretty much had no suggestions and pushed osteo-meds. I took alendronate for 1.5 yrs (took last dose the week of my 2nd DEXA scan) The alendronate caused digestive tract issue so I stopped taking it in July 2021.

My 2nd DEXA show small gains in BMD. My lumbar t-score increased from -3.9 to -3.7.

Since I could no longer take alendronate, my endocrinologist pushed me to have a zoledronic acid infusion. I was so worried about what to do I focused on the infusion and with no other options offered I had my 1st zoledronic acid infusion from in November 2021.

I’ve had no major issues with the infusion, yet. I have good dental hlth and luckily, I learned on my own (my irresponsible endocrinologist didn’t tell me about ONJ) that you should have a complete dental exam and discuss bisphosphonates w/ your dentist BEFORE you start taking them, especially in infusion form.

After the infusion, I started researching osteoporosis and what I could do to reverse it naturally. Wish I’d done this back in 2019.

While doing research I learned about the Marodyne LiV platform, OsteoStrong, the Australian LIFTMOR study, vitamin K2, etc., meaning I learned there are ways to potentially reverse bone loss naturally.

I also learned and TBS (trabecular bone scan/scores), bone turnover markers, and tests for secondary causes of osteoporosis—my endocrinologist discussed none of these with me before pushing osteo-meds.

Although my endocrinologist’s plan was that I have a 2nd zoledronic acid infusion this November, I’m not planning to do so. Again, I haven’t had any major problems with the infusion, I just prefer to try a few other avenues instead of using potentially dangerous medications.

If you go to my bio, you will find 2 links. One is for tests you should discuss/have before starting osteo-meds to rule out secondary causes. The other is a pdf of bone turnover markers—some of these tests are listed in the first link. You need a baseline of your bone turnover markers.

If you go to BetterBones.com and search that website for Cindi’s story, you can read about how one 60 something y.o. woman was able to naturally reverse her osteoporosis.

If you want to try alternatives to meds then take a minute to do it. If you are fracturing the infusion might be the right option. If you aren’t already doing HRT, you might want to discuss that option with your doctor.

[MyStar86]

I am 35 I was diagnosed with osteoporosis in 2015 but I put off the meds due to my longterm bowel problems however in 2020 I broke all my ribs on both sides……falling out of bed whilst in hospital!!! The pain of the ribs was enough to force me to take the meds I can only have Zoledronic acid infusions I have my second one coming up in November.

The initial side effects were horrible the first two weeks it felt like when I had covid awful flu symptoms but the bone pain is scary I could even feel my tail bone which I never even knew was there.

However since then I had my dexa scan recently and my spine is now -2.3 so it’s back to osteopenia 🥳 so I’m very happy my hips are still -3.3 but I am going into my infusion happy to do it as a few weeks of side effects then it wears off it’s just when the meds are getting to the right places. The pain of the breaks was so bad and scared me so much that I am very happy being on the infusions.

Someone told me to extra dose up on the calcium and vitamin D for a few weeks before the infusion and 6 weeks after to help ward off the initial flu and sickness side off things as that really helped them so that’s what I will be doing.

Good luck xx

[jimister in reply to MyStar86]

I was encouraged to read that you started to feel better after your first infusion. I had my first one 3 days ago and have never felt pain like this in my life. I went to bed as an active person with no joint problems and woke up disabled and not able to move. I never thought it would be as bad as this and i'm so frightened i will never be back to normal. I came off Prolia after 9 injections so had no choice but to go onto zoledronic infusion.

[MyStar86 in reply to jimister]

I’m having to put my second infusion off due to having gastric surgery in November so I don’t want to risk the infusion making me too weak for it but I will have it again in December but I am not looking forward to the initial side effects. They honestly do wear off well they did for me it’s very scary to start with but you just have to think the medication is working getting into the bones and doing it’s job once it settles down you will feel better and do take the calcium and vit d as the Zoledronic acid depletes the body of it so that’s why you feel even more unwell. I just had lots of baths Epsom salt can help too but it just has to run it’s course give it two weeks and if the bone pain is still very bad do contact your doctor to be safe. Keep us posted how you get on!! It really upset my tummy too as the infusion contains mannitol which givens me violent toilet issues but again it does slowly ease. I was on anti sickness pills for months after though and still have to take them now but that’s the main thing that I couldn’t shake from it xx

[jimister in reply to MyStar86]

Thanks for the reply. I do feel a bit sick but have'nt actually been sick. I really don't need that as well. I have lost my appetite which is not like me i'm always hungry. I'm very underweight so cannot afford to lose more. Who would have thought a drug could cause all this suffering.

[MyStar86 in reply to jimister]

we have to think of it as short term pain for a long term gain as fractures etc the pain and symptoms cause a lot more suffering than the infusion. My ribs took over 2 years to heal after breaking them all in multiple places I couldn’t leave the house for about 8 months it was horrific especially without pain meds I was suicidal. However the infusion side effects will wear off it’s just horrible taking something to make you better that initially makes you worse however do focus on the future as it can reverse osteoporosis as it did with my spine frpm -2.7 to now -2.3 so that’s amazing in my eyes my hips are still -3.3 but I was more worried about the spine so I’m happy with that especially having a total hysterectomy etc at only 35 and like you I’m very overweight so the odds are not in my favour with osteoporosis.

Keep strong and keep us posted we are all here for you and I’m sure when I have my next one I will be in the same state worrying xx

[jimister in reply to MyStar86]

When i was put on Prolia i was never told of the rebound vertebral fractures if it was stopped. I suffer with chronic pancreatitis and it was being aggravated by the Prolia which gradually got worse the longer i was on it. Unfortunate really, because i never had any other issues with it. When i had the first injection it did not cause anthing like what i am having now. But there are some people who have had a terrible time with Prolia. But i will try to keep positive and hope that i am happy enough to have the next dose of zoledronic in a year from now. Good luck with your surgery next month.

[Zumbablue]

I had a Zoledronic with infusion in February 2021. OK at first but 3 days later I couldn’t walk and the bike pain was unbearable. I decided not to have the second infusion in 2022 and started the Terrossa daily injection last week. So far so good. No adverse affects.

[FJMG in reply to Zumbablue]

thanks for the info

[Zumbablue]

bone not bike!

[Bluebell999]

I had a spinal collapse with at least 8 or 9 vertabrae involved. I hadn't taken any bone medication before, except the odd Adcal or Vit D tablets when I remembered. Warning! Don't ignore bone meds when you have an osteopaenic diagnosis. My osteoporosis developed during the three years before my collapse.

I had my first Zolendronic infusion as I was not able to have oral biphosphonates because of gastritis and reflux.

I had a terrible reaction, feeling like flu and bone pain. A blood test confirmed the calcium had been practically stripped and I needed to top up quickly to avoid further problems.

After a few days I began to feel better and over the months the improvement in my mobility was very good. Naturally when the time came for my next infusion I was very worried, but I was told to take extra Adcal and vitamin D about two months before and six weeks after. Also to have the infusion slowed to about 30 to 40 mins, (first one was 15 mins)

I was encouraged to drink plenty of plain water the day before, on the day and the day after.

My infusion went fine, I had a slight headache and a little back pain for a couple of days, but I was okay and nothing on the scale of the first one.

I can't say how much my spine has improved, it is really remarkable. I have even regained a couple of centimetres height which has helped my BMI no end! I am now moving more easily and can gently bend at the sides and can pick up small things from the floor whilst holding on to furniture or my frame.

I know I still have a way to go, I still walk with a frame and use a wheelchair when out but I feel better in myself knowing that I am steadily improving and going in the right direction.

It has been 2 years next month since my collapse and at the time I was incontinent, could not reach my arms out or up or walk more than 2 steps and could not bear for my back to be touched. I spent six weeks in hospital so I will not hesitate to have another infusion if I am offered, as I never want to go through that experience again.

A couple of days or so of feeling unwell is certainly worth it for the results I have had over the rest of the year.

Xx

[FJMG in reply to Bluebell999]

thank you and I hope your recovery continues!