[susieParticipant]

Hi All

Has anyone on Zometa experienced any kind of back, hip, or femur pain ? I’m not talking about flu type symptoms.

I’ve had my 7th infusion and again I have increased back pain and pain in my left hip and the top of that femur. The pain is only on weight-bearing ie walking. It starts about 2 days after infusion and gets worse over about the next two and a half weeks. I’ve had another MRI and my consultant said it showed no myeloma and really shows no interest in what is causing it. He was going to refer me to a rheumatologist but “forgot to do it” I’ve looked Zometa up and it seems this sort of thing can be a side effect, but again my consultant says its nothing to do with Zometa.

I’d be really interested to hear if anyone else has had this side effect.

Best wishes to all

susie

[finnParticipant]

Hi Susie

Yes, I had similar pains after Zometa infusions! Mine started maybe a week after the infusion and got worse for two weeks before getting better just before it was time for a new infusion. My lower back, left hip and femur were really achy. I always assumed it was caused by Zometa going into bones and taking minerals such as calsium with it, but it could have been something else too, such as bone marrow making new cells/components for the bone. Anyway, after two years I have now stoped Zometa infusions and although I have occasional bone pain, it does not have a pattern and I can cope with it without pain killers. Best wishes

 

[davidbrParticipant]

Hi Susie

I found your post very interesting. I am on my 18th Zometa and have not noticed many problems before. But now thinking about it the last 2 have been terrible.

After my previous infusion I had a very sharp pain in my Right hip if turning quickly or sneezing. It made traveling in a car very painful when the car went over speed bumps or holes in the road.

After my latest Zometa on 2nd June I had flu like systoms for a couple days. Then until now I have had very bad pain again in my right hip which makes sleeping and walking difficult. I also feel because of the pain I don’t want to do anything and everything is an effort. I tend to work through it and go for my usual 2 mile walk but then I suffer for it later and get very stiff and painfully when I rest.

As I have been having Zometa for 2 years now and the next one will be my final one I am now wondering if I should cancel.

Best Regards

David

[kpParticipant]

Hi Susie,

I find I feel generally unwell after the Zometa infusion for a few days and it also upsets my digestive tract. This last cycle the Nurse let it run through in five minutes and two weeks later I am still not right. Makes me wonder if it is worth it?
Cheers

Karen

[susieParticipant]

Hi All

Finn. Interesting to read your symptoms. Is your pain there all the time or like mine, just when you walk ie weight bear ?

As Zometa strengthens bones I wonder if the pain is the zometa actually working.

Best wishes to all

susie

[finnParticipant]

Hi Susie

I did not have constant pain but what I would call an annoying and painful ache while walking, bending etc. Sometimes my femur and hip were aching during night when sleeping on one side for too long. I would not worry about it (easier said than done), and maybe you can take some painkillers for it? Best

[susieParticipant]

Hi finn.

Thanks for your reply. Yes I am on pain relief, co-codamol.

Best wishes

susie

[christaylorParticipant]

Hello Susie, I do have bone pain after a Zometa infusion especially my femur leg bones and back I do suffer this pain as a matter of course but it certainly seems worse after the infusion. I normally have to take extra pain relief for this period of 3 to 4 days then it settles. I have mentioned it to the nurses who give it to me and they say the bone pain is likely to be the Zometa.  I feel that although it’s painful if the Zometa is really strengthening my bones then a few extra Paracetamols it’s worth doing.

Take care CT.

[tampelanParticipant]

I was on IV Zometa for around three and a half years.  They may stop it at any time after two years post transplant if you are still in remission.

The drug has a fairly long life. I used to get it every five weeks which suited my work rota.  It did give mild bone pain for three to four weeks after infusion.

Its only now that I’ve been off it for several months and reading this thread that I realise I don’t get that bone pain any more………..

They were going to try prednisone to see if that was better if I remember correctly but just decided to stop altogether.

 

[steverowleyParticipant]

I receive my treatment at Portsmouth’s Queen Alexandra Hospital.

Last year, 2014, I was moved onto  Zometa from Pamidronate but found it didn’t agree with me, headaches and sickly feelings. Also found the calcium tablets, that I was given to take on a daily basis, were rather unpleasant to take.

As a result of this, I requested to revert back to Pamidronate, which was duly agreed.

As I had been receiving infusions on a monthly basis for two years, this has now been extended to an infusion lasting 1 hr 30 mins, every 3 months.

All is now well.

Steve.

[CarolsymonsParticipant]

Parmidronate stopped after 2 years in Australia, but I didn’t notice side effects except flu like symptoms after the first infusion. For now, so happy to be drug free.

Carol

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