Back to square one: Had my first zolendronic acid... - PMRGCAuk

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Back to square one

Mimma profile image
15 Replies

Had my first zolendronic acid infusion yesterday. Guess I’ve reacted badly to it. Shivers, temperature, swelling, aching etc. All the classic PMR symptoms.

Anybody else reacted like this?

I called the hospital and was initially told I must have picked up a virus at the hospital and to call my gp.

Then the dr called me back and said it could be from the infusion as it was my first one. He said it should pass in 3-7 days.

Should I up my prednisolone? On 8 mg a day at the moment.

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Mimma profile image
Mimma
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15 Replies
Attic profile image
Attic

Hi Mimma. I had my first one last year and was jus t like you, I felt awful. It passed in a couple of days though, without increasing Pred. I am pleased to tell you, I had second one in June with no ill effects at all. Hope you will be the same! Take care, Jenny x

Mimma profile image
Mimma in reply toAttic

Thank you for getting back to me. Good to hear it will pass soon! I have 14 hour plane journey in a few days time and just hoping I’ll feel better.

Hi Mimma

I had had a full course of Zolendronic Acid (Post Chemo) every six months for 3 years with no side effects at all.

What annoys me is the hospitals attitude, it is well known that it can cause bone pain & flu like symptoms. Personally l would treat it as such, rest, take a simple pain killer but not necessarily increase your Pred.

Hope you feel better soon 🌷

MrsN

Mimma profile image
Mimma in reply to

Thank you. Good advice

in reply toMimma

My first one was so unremarkable l thought they’d forgotten to add it to the drip!

Hopefully you’ll feel better soon 🌷

Mimma profile image
Mimma in reply to

Thank you

Blearyeyed profile image
Blearyeyed

I'm so sorry , it's horrible when the drug you take to feel better begins by making you feel worse.

It definitely sounds like the side effects as your body adjusts to the new drug entering your system and reality the hospital should have prepared for this possibility by talking to you and giving you the required paperwork.

I'm surprised their instant reaction was to blame a bug rather than a more knowledgeable answer.

As your GP said , these side effects should die down in a few days as your body rebalances to the new drug. The same level of side effects shouldn't happen again , or at least not to the same level.

If these symptoms get worse though , or you begin to suffer trouble breathing or swallowing , itching and swelling skin or mouth , dizziness or fainting contact a doctor again or go to an out of hours service before increasing the Pred. These are signs of a severe intolerance or an allergy and you need to get it checked and get advice before increasing the Pred.

If you get the familiar symptoms of PMR on top of your current symptoms the side effects might have triggered a mini flare and then it may be necessary to increase your dose for a few days. Again , it might be worth waiting and checking this with the GP first.

Take care and I hope things improve soon

Mimma profile image
Mimma in reply toBlearyeyed

Thank you Blearyeyed for your advice. I will wait till Monday and then reassess.

PMRpro profile image
PMRproAmbassador

No, not unless the GP suggested it. It's a reaction rather than an infection and in fact I have never raised my pred dose even with infections.

Like MrsN I'm not impressed by the hospital's response - it is a listed effect.

Mimma profile image
Mimma in reply toPMRpro

Good to know. Thank you. I actually did ask the rheumy who checked my bloods before the infusion if I would experience any side effects. She said 'you may feel a bit warm but thats it'.

PMRpro profile image
PMRproAmbassador in reply toMimma

Yes, during - but afterwards is often more interesting!!!!

scats profile image
scats

I was given a leaflet that explained possible side effects and that would have covered what you felt.

Like MrsNails I felt nothing, but I am pretty sure it caused the horrible mouth I was left with for at least a year afterwards. Horrible taste and peeling skin lining the mouth.

Hope all goes well for you.

Mimma profile image
Mimma in reply toscats

Thanks Scats. No leaflet from Hammersmith Hospital. Guess the reaction I have is quite rare.

HeronNS profile image
HeronNS in reply toMimma

Looked up reactions on google and your reaction is top of the list.

Mimma profile image
Mimma in reply toHeronNS

Thanks HeronNS

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