Zolendronic Acid Yearly Infusion

[Attic]

Hi everyone. It has been suggested that I take Zolendronic Acid as a yearly infusion. I think the list of possible side effects looks horrendous and would welcome opinions from people who have tried it please.

Thank you Attic x

[HeronNS]

Hi Attic, why has this infusion been suggested to you? Were any alternatives given? Personally I agree with you about the list of side effects. Why these medications are on the market beats me. Unlike prednisone which so far is the only treatment for some things (like pmr) there are other less scary ways for most people to help strengthen their bones.

[bowler]

Hi attic

I only had one infusion, that was enough for me, the side effects were awful, however you wont know how you will react unless you try it, as we are all different,

I have been on Pred for 16 years and only take a calcium/ vitamin D supplement, and so far all my bone scans have been normal, but like I say we all react differently.

[Attic in reply to bowler]

I agree with Bowler and Heron, the list of possible side effects makes very scary reading indeed. The Lady at the National Osteoporosis Society suggested I give it a try, because I can' t take Alendronic Acid. I am taking Osteocare Calcium, Magnesium and Vit D at the moment with Vit K. She said they wouldn't help my Bones at all except as a top up if my diet is deficient.

To be honest, I have had enough bad side effects with the Pred, without having to contend with anymore, but she said if I didn't take something like the infusion or some other frightening Drug then the way my Bones are I would be in trouble. I have two Fractured Vertebra in my Upper Spine at the moment.

Thanks for listening Ladies.

Attic x

[HeronNS in reply to Attic]

The fact that you've already had a couple of fractures is worrying and I really wish at this point that I had medical training and could advise you. I do know that there are people out there touting the natural methods who say that even people with full blown osteoporosis can be helped. I thought I had osteoporosis for a couple of months, and getting a more accurate report which makes me fairly severely osteopenic, but still not osteoporotic, made me very happy indeed. I had already decided not to take the OP drugs, though, and embarked on what I now not so fondly refer to as My Osteoporosis Journey. If you can find a way to protect your spine, perhaps there is something out there, maybe you would be safe to go the more natural route? In time your bones would become stronger and less and less likely to fracture, but because it is such a slow process you'll have a year or more of trying to stay unbroken. I have heard people say that strontium is an acceptable alternative to the more risky drugs. Strontium is not really harmless because there is a reason the body prefers calcium to strontium, but it does make the bones harder and as far as I know it does not come with the same scary potentials as any of the other OP drugs. It might be a possibility as you embark on your bone-building adventures? Worth a little research?

[Attic in reply to HeronNS]

Thank you Heron. I will have a look straight away.

Attic x

[HeronNS in reply to Attic]

Let me know what you find out and what you choose to do. Rest assured that whatever you decide we are here to support you and give you virtual hugs.

[Attic in reply to HeronNS]

Thank you Heron I will have to think long and hard, but thanks for being here for me.

Attic x

[HeronNS in reply to Attic]

If you google strontium spinal fractures you will find a long list of scholarly articles on the subject. I didn't investigate to see if they are referring only to prevention of future fractures or if there has been research on people who have already experienced osteoporotic fractures.

[HeronNS in reply to Attic]

Attic, this is an interesting commentary:

consumerreports.org/cro/201...

And this, which on the whole is pretty positive regarding zolendronic infusion (not tablets), although it notes a lack of research regarding long term side effects:

ncbi.nlm.nih.gov/pmc/articl...

I was bemused by my doctor who originally seemed quite okay with my refusal of OP medication (I have osteopenia and no fractures so much more fortunately placed than you) but after she attended a workshop on osteoporosis was much more adamant that I am wrong to refuse them. Wonder who sponsored the workshop?

[bowler in reply to Attic]

Hello Attic

you didn't mention in your first post that you had problems with your bones, I thought you were being offered Z/acid because you were taking Pred, as I was. Like I said we all react differently, so it's up to you to give the treatment a try as I did, but it didn't suit.

I wish you luck.

[Attic in reply to bowler]

Thank you Bowler.

Attic x

[PMRpro Ambassador in reply to Attic]

I can't remember - have you told us why you can't take AA? Zolenronic acid is also a bisphosphonate but as an infusion probably avoids the gastric problems but other side effects might still apply. The only way you find out is by trying.

Have they not suggested denosumab or Forsteo? Denosumab is a also classed as a bisphosphonate because of the way it works but is a very different drug. Forsteo is a synthetic version of a natural substance that encourages bone formation.

If you already have spinal fractures it is probably too late for the "natural approaches". The first ones are often merely uncomfortable but if they get worse it can be very painful.

"Why these medications are on the market beats me." - because, believe it or not, the alternatives to not using them are mostly far worse than the effects. Drugs do have to undergo strict assessments before being approved - and they are not approved without showing themselves to have a purpose, especially in the UK. You will see a lot in the print media about how disgusting it is that this wonderful new drug is being denied patients who need it: that is usually because it DOESN'T do entirely what the makers claim, or that it costs a vast amount to achieve maybe a few weeks/a minor improvement. Whatever is said about the approval committees, they do look at the cost benefit relationship. If it doesn't benefit - they are reluctant to approve it.

You MUST remember that the side-effects listed on the data sheet are every single side effect that was observed in the clinical trials. Pred has 82 listed - and we know of a few that aren't mentioned. No-one gets all of them, many people get very few, even none. You cannot forecast who will get which, no crystal balls here, but it is perfectly possible you will have a good response and few problems.

[kingharold11 in reply to PMRpro]

Hi all I have been taking a monthly tablet of Ibandronic acid for the last 2 years I wouldn,t say there are no side effects but there are less than when they insisted I take alendronic acid I don't have stomach problems with it but I do get vague dizzy feelings but then I get that with everything.At least its only once a month and not every week.

[Attic in reply to PMRpro]

Thank you PMRpro. I realise I need to take something but the Alendronic Acid gave me Heartburn beyond belief, I was actually being sick with it. I will have a good think about it and as I can't see my Dr. until Jan 21st, I have plenty of time.

Attic x

[PMRpro Ambassador in reply to Attic]

He's following the guidelines - you "failed" the first option of AA, he feels that you had gastric problems rules out all the oral bisphosphonates - next step is an infused one. I think you have to accept trying it once.

[Attic in reply to PMRpro]

Thank you PMRpro, You are probably right,but as I said I will have to do something. I have had an awful Cold the last few days and have been sneezing for England. As I said, I have just had two Fractures without knowing how I got them, but now after all the sneezing am in agony again and I just know I have got yet another Fracture. It is agony.

Attic x

[daw50]

Hi Attic

I am at the beginning of Y6 with GCA/PMR. I had Zolendronate IV for 3 years as I found it very difficult to swallow Alendronic Acid pills once weekly. My bone density is excellent (3 dexa scans). I had no side effects from this drug. I would advise you to have it as GCA/PMR needs all the help it can get. I have found that the hardest thing to accept about these conditions is that they are incurable. Once I had accepted that my outlook on life changed completely. I now do whatever it takes to give me a good quality of life and I am much happier for it. My advice would be to take whatever is offered if you feel you will benefit from it. Good luck.

[HeronNS in reply to daw50]

What was your bone density before you started the treatment? Glad it was helpful for you.

[daw50 in reply to HeronNS]

I was sent for a Dexa Scan once the diagnosis had been confirmed. I had never had a Dexa scan before this so I don't know what my bone density was prior to this.

[HeronNS in reply to daw50]

Just wondering if your bone density had improved because of the treatment or if you started out at excellent? I didn't have a scan until three months after starting pred, and that may or may not have made a difference, that I'll never know.

[Attic in reply to daw50]

Thank you Daw50. The pain I am in again now,I think I would take anything to get rid of it.

Attic c

[Annodomini]

Hi Attic, when I was first diagnosed with PMR (in 2011), I couldn't have Alendronic Acid because I already had a reflux problem which would be exacerbated. I was prescribed Strontium Ranelate but read some disturbing reports about heart trouble resulting from it and decided to discontinue. I continued to take AdCal. Then I had a dexa scan which showed that I had osteoporosis in my left hip. My rheumy suggested that I should try the ZA annual infusion and I agreed, as a last resort. The rheumy nurse took me carefully through the procedure and the possible side effects so I went ahead. That was a month ago and I can honestly say that I've been one of the lucky ones. I haven't had the fluey symptoms or the joint pains that I'd been warned about and enjoyed my Christmas with family to the full. It's up to you, Atic, but although there are two sides to the coin, it is possible that you, too, could be one of the lucky ones.

[Attic in reply to Annodomini]

Thank you Annodomini. I am so glad it worked for you. I just don't know what to do really. That is why I am asking the Ladies and Gents on here. It is nice to hear differing opinions.

Attic x

[Sallyaches]

Hi Attic, I take Risedronate orally and can cope with it. Maybe this would be worth a try if you don't want to go down the infusion route? You would only have to try it for a couple of weeks, and unlike the infusion it would be out of your system in a week.

Best wishes

[Attic in reply to Sallyaches]

Thank you Sallyaches, I was thinking that. It probably makes sense.

Attic x