After Zolondronic Acid infusion. : Hi, I had my... - Bone Health

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After Zolondronic Acid infusion.

ROSmember profile image
15 Replies

Hi,

I had my first Zolondronic Acid infusion in February and since then I have come out in bruises on my arms and legs, my joints swell, I get tired quickly I have no energy and My muscles are weak, my skin looks as if it’s dehydrating, I can’t stand or walk for very long.

Are these side effects that anyone else has suffered.

Thank you.

15 Replies
Fruitandnutcase profile image
Fruitandnutcase

Haven’t had zolendrinic acid or an infusion but a lot of your symptoms sound like how I feel on alendronic acid. I say feel but it should actually be ‘felt’ because I stopped in July. I have had enough.

I was tired, had no energy, no interest in life, muscles hurt. Constant sinus infections, teeth, face, everything hurt from when I started - just horrible.

None of the gut problems I was half expecting though. I felt very down as well. Not nice.

Hopefully someone will be able to answer your questions and I hope you start to feel a bit better soon but you’ve been feeling terrible for a long time. I’ve got an inkling of how awful you are probably feeling and it’s no fun.

ROSmember profile image
ROSmember in reply to Fruitandnutcase

Thank you fruitandnutcase I wasn’t like this before the infusion, I’m hoping I can get to see the rheumatologist before my next one, I seem to have gone downhill. Take care.

Sunseaandsand profile image
Sunseaandsand

Hi, I have not had Zoledronic acid infusion yet, I was supposed to have my first infusion last December but because of problems I was having caused by an injection of prolia it did not go ahead.

What I can tell you though is I HAD the same problems plus more that you are having when I was having 3 monthly infusions of Ibandronic acid.

I was having the injections for 3 years before it was discovered the infusions were the cause of my problems.

I ended up seeing so many different consultants because of the different side effects.

I had biopsies taken which were painfull and distressing.

I had all the things you describe and I also had blood blistering in my soft palete and down my throat.

I had oral thrush that would not clear even with strong treatment and they blamed it on my inhaler, 3 whole years I was back and forward to the hospital for one thing or another that in itself wore me out and wore me down.

The doctors at the bone clinic were adamant it was not the infusion that was causing me these problems.

In the end a leading consultant in dermatology wanted me off the infusions he was convinced after taking biopsies from my fingers, hands and knee that the infusions were the cause of my problems. He wrote to the doctors who were treating me and I was promptly taken off it.

The blood blistering in my throat and palete stopped occuring almost straight away( it always happened shortly after my infusion)

The bruising in my hands fingers and knees continued and gradually decreased although this took a long time because the bisphosponates stay in the bones for years and as the bones turn over it is slowly released.

My hair which I had been losing returned to normal, the aches pains and tiredness went away and the joints in my fingers stopped swelling.

My energy levels returned to normal again and I felt well again.

The chest infections I had also been plaqued with almost ceased.

The thrush dissapeared with treatment and did not return.

In 2017 I had 2 further spinal fractures a month apart of each other I was becoming more disabled by the fractures and was that frightened of more I foolishly agreed to try the infusions again.

I must have been out of my right mind.

I had 2 injections one in the August and the second in November.

ALL my previous problems returned and It was finally proved to me after all those years that the ibandronic acid infusions had caused the oral thrush.

It may sound terrible, but to hear of your experience has actually made me feel better because at long last I am hearing of someone who has a lot of the same symptoms as I have had.

It has also confirmed in my own mind that that the different yet so similar bisphosponates can and do cause the same side effects.

I hope in some way this helps you.

Take care.x

ROSmember profile image
ROSmember in reply to Sunseaandsand

Sunseaandsand. Yes it helps me a great deal, you have described everything I have except swollen joints and throat and thrush problems. I will be thinking seriously about not having anymore. I am haveing a phone call with my doctor on Thursday I will be mentioning this. Thank you again. Take care x

Sunseaandsand profile image
Sunseaandsand in reply to ROSmember

I hope your telephone appointment is a positive one for you.

Please let me know how you go on.

We do have to try what is reccomended for us but unfortunately one man's medicine is another man's poison.

On a positive note you have been able to link the treatment to your symptoms reasonably quickly.

Take care x

ROSmember profile image
ROSmember in reply to Sunseaandsand

Sunseaandsand thank you I will let you know how I get on x

Sheila5022 profile image
Sheila5022 in reply to ROSmember

Hello. I also had that Zolendronic infusion last October and had no problems. But I do keep getting red marks on my arms and legs but thought it was due to the steroids I had to start taking last August for polymyalgia rheumatica. Take care

ROSmember profile image
ROSmember in reply to Sunseaandsand

Hi Sunseaandsand as promised I’m letting you know I went for my blood test and unfortunately I have to have another on the 17th as the doctor didn’t like the results so doing them again. Stay tuned. X

Sunseaandsand profile image
Sunseaandsand in reply to ROSmember

Hi, Sorry to hear that your blood test has to be repeated, and I hope when you get the results it will tell you what the problem is and that they can have it resolved quickly for you.

In the meantime I shall be thinking about you.

Thank you for letting me know and please get back in touch when you know more. Xx

ROSmember profile image
ROSmember in reply to Sunseaandsand

Thank you I will, take care. X

ROSmember profile image
ROSmember in reply to Sunseaandsand

Hi sunseaandsand

Well at last I have my results of the blood tests and they are all fine, I now have to wait another 9 days to have a phone consultation with the doctor as to what happens next.

I personally don’t want another Zolondronic Acid infusion as I am sure that has been the cause of all my problems.

So the saga goes on, nothing happens fast these days does it?

I hope your keeping well? Xx

Sunseaandsand profile image
Sunseaandsand in reply to ROSmember

Hi, Thank you so much for keeping in touch and letting me know the good news about your blood tests.

I can well understand your reluctance to continue with the treatment.

Hope something positive comes out of your telephone appointment in 9 day's time.

You are quite right about nothing happening fast, I now have the long wait till next March before I can even have x rays or scans!!

Let me know how you get on.

Take care in these uncertain times.xx

Potzerella profile image
Potzerella in reply to Sunseaandsand

Hi there

Just read your post, it sounds very similar to my situation

I had a Pamidronate infusion in 2019, 18 months ago for a childhood bone condition which turned out i didn't need, but that is another story

About 3 months later my hair started to thin, after 5 months my scalp started to itch and burn, a few months later my eyes went dry, I developed tinnitus, dizziness and became excessively tired. My sinuses became dry and nose became aggravated. After being dismissed by the consultant who prescribed the pamidronate and many consultations with GP,s and dermatologists. I was diagnosed with various types of alopecia, dermatitis, lupus, even anxiety, and sent on a CBT course for my mental health.

After many blood tests to rule out auto immune conditions, 2 scalp biopsies indicated unspecific changes the last suggested urticaria and or a drug reaction!!!

Suddenly my gut instinct was confirmed.

I was not told about the long term side effects of this drug and in particular how biphosphates become encased in the bone and released for many years (hence the delayed reaction) . I see you had ibrandronic acid which i think is less potent than pamidronate but would be interested to know how long it took for your side effects to disappear in particular how long it took for your hair to recover. I still have all the side effects and my hair is still thinning and I don't know where this will lead

Hope to hear from you x

2-0-1-9 profile image
2-0-1-9 in reply to Potzerella

Hi Potzerella,

I’m so sorry that your suffering like me, I however have been to the doctor and it seems that I may be right the zolondronic acid is the reason for all my conditions and the worst thing is it could stay in my system for 2 years and I may never get all my hair back or my skin back to normal. Any way the doctor is on my side and he’s given me some exercises to do 3 times a week plus my walking and vitamin D hopefully it will help.

Only time will tell.

Keep in touch well get through this. ROSmember.

ROSmember profile image
ROSmember

Hi Sunseaandsand I’ve had a conversation with my doctor and he’s taken me off Statins as my cholesterol is normal and he thinks it may have caused some of my problems.

I have to let him know after Christmas, if I am still having the same problems then he will look into the Zolondronic Acid infusion, he doesn’t think that it is the cause of my problems.

He is very reluctant to stop the infusions because I’ve had several fractures he said you need the infusion!!

Anyway again I am playing the waiting game but we’ll get there in the end.

I hope your well and staying safe it’s been a horrible year and there may be another on the way!!

Take care from Pam x

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