Unable to take the prescribed drug to protect my bones from ongoing use of steroids , I received a Zoledronic Acid Infusion last Friday. I was told I might exhibit flu symptoms for a few days afterwards but apart from excessive tiredness over the weekend (which isn’t unusual for me) I didn’t appear to have any side effects and in fact from Tuesday through to Thursday I felt better than I have done for months. Then on Friday morning I awoke to find my muscles had seized up to the extent that it was hard to get out of bed or walk unaided. This eased very little during the day and for an or so hour in the evening I was experiencing severe cramping in both feet and occasional spasms in my calves. This morning I found, I not only had the same problem with my muscles , but also very painful thumb, knee and shoulder joints. I am wondering if this could be a delayed side effect of the infusion. I know these can be common symptoms of vasculitis but until now I have never experienced any aches or pains in my muscles or joints either before or since my diagnosis. I would add that over this last week I have been making a gradual reduction in Pred by alternating daily between 20gms and 15gms and I have just recovered from Cellulitis which flared up in the week before Christmas so perhaps this has contributed to the issue. Apart from a rise in my usual high protein level, my fortnightly blood test on Thursday showed my overall results were looking very good prompting the GP to add “no action needed”. I’m hoping this will be short lived but am interested to hear if anyone else with a vasculitis condition has experienced anything similar after having Zoledronic Acid (or perhaps Cellulitis).
Zoledronic Acid Infusion : Unable to take... - Vasculitis UK
Zoledronic Acid Infusion
I am sorry to hear that you feel quite unwell. I was on Zoledronic acid infusions for 3 years, but I didn't have any major side effects.I remember though that I was told to contact my doctor if symptoms appearing after the infusion didn't ease in a couple of days or if they were not manageable with paracetamol after the second day. If I had a hip/groin pain to report asap.
We all react differently to medication and I personally don't find it unlikely for someone to react a day or two later. The most important thing is if the symptoms ease -as they should if they are a reaction to the infusion.
Thanks I was surprised to get such a sudden and severe reaction after a week so really hoping it is just temporary
Sorry can't give you first hand experience yet. I have vasculitis and am now borderline osteoporosis in my spine so they will soon start me on Denosumab (another class of bone density treatment). I will let you know how things go in case it is helpful to you later. Best of luck!
thanks I hope it all works well for you
I had the flu effect - but not for 2 or 3 days immediately after the infusion, ot took 3 days to appear and then lasted 3 WEEKS!! It also triggered atrail tachycardia instead of the atrial fibrillation I had just had an ablation for!!
However, the infusion will have an effect on the immune system and my immediate reaction to reading your post was it might have triggered polymyalgia rheumatic (PMR, and my specialist subject!).
This
pmc.ncbi.nlm.nih.gov/articl...
reports an immune mediated response to zolendronate where they considered PMR as a possible diagnosis. Their discussion ignores the fact that PMR can be the manifestation of a drug reaction as the immune system is triggered into autoimmunity so PMR remains a possible diagnosis.
Thanks for your reply I am hoping it is a temporary reaction and isn’t down to another form of vasculitis. I have since seen online case studies where the infusion to help osteoporosis has triggered a vasculitis illness up to a month later . It is always a concern that you have a course of medication intended to help and you can end up with worse symptoms than you had before . I’ve now stuck to taking 20mg of Pred for the last 3 days and do think things have eased an bit this evening so fingers crossed
Anything that has an effect on the immune system can trigger a relapse or even a new disorder - it's a fact of having an deranged immune system! Bit of a pain, but there it is!
Hi Obscureclouds, I am sorry to hear of you reaction to the infusion. I had this done last July and I am due for 2 more yearly infusions for osteoporosis. My reaction was the following morning, I could not lift my arms, due to the joint pain. I did feel flu like and just couldn’t really walk upright for the whole day. I also felt sick most of the day too. After 2 days, the symptoms gradually subsided, so I really hope the same happens for you.
I was warned of the side effects and mine were probably as predicted.
I wish you well and I just wondered if others think the infusion is worth having again? I have heard some people say it doesn’t always help with osteoporosis and as I am not medical, I am not sure of the stats.
Take care and I hope you feel much better soon.
Suzy
It may not make a massive difference to bone DENSITY, it usually does, but density isn't the whole story, the trabecular structure of the bone is also stablised and that is crucial.
Despite the cardiac effect of mine last year, I am booked in for this year's infusion in 2 weeks - and the cardiologist agreed that was best. All I can say is that my really bad back pain improved steadily after the infusion.
The talk at the Yorkshire support forum last week was very persuasive about prevention. We were also told that once you have 3 infusions, the effect lasts for about 3 more years and you have a holiday from infusions.
Thank you PMRPro, I really appreciate your advice on this , as I know you have a wealth of knowledge with you medical background.
I do have one more question regarding this and it is to do with dentistry. I know the Rheumatologist told me to go to the dentist to see if I needed any major work done and there may be issues with gums healing after an extraction and possible necrosis. However, after my 1st infusion, my lower teeth have started to twist and I’ve never had this before, so not sure if this is related to the infusion or just the gums changing due to age?
Thank you Suzy
Have you asked the dentist about that? A retainer for night wear may be all you need to sort that but he can do an x-ray to see if anything is going on.
Yes, I did ask and he said it just affects the gums, but the timing just seemed a coincidence. A night retainer is a good idea. Thank you.
I hope you are keeping well and enjoying Italy. I am very jealous!!
Suzy
WHat just affects the gums?
Hi, I’m due my second infusion once my Vit D levels are satisfactory. Was told after the third infusion it lasts for ten years.
Yes I was also warned about possible side effects but the indication being they were likely to be more immediate. But I’m now more hopeful that it will turn out to be just a short term reaction. Like you i was wondering if the infusion is worth having again if it’s going to cause me further problems. At the moment I’m not aware that there is a particular problem with my bone density but more that it was given because of my age and fact that I have been on steroids (and at times on high dosage) throughout the year. It’s therefore been interesting to read the replies to your post so thanks to everyone who has contributed
The acid used in the infusion, but I read online it can also affect movement of the teeth, so I’m not really sure which is correct
What a strange thing to say - that's like saying citric acid damages your body - it is vit C. Oral alendronate improves periodontal disease,
pubmed.ncbi.nlm.nih.gov/157...
sciencedirect.com/science/a...
is something for the naysayers who say it impairs wound healing.
Thank you, that is really interesting reading. I really appreciate these links.
Suzy
GPA under control but still get joint pain
Rituximab infusion 
New to all this...
