IV zoledronic acid osteoporosis treatment anyone?

[Barnclown]

hello all. following on from my earlier questions/posts on this subject:

today i attended the metabolic bone unit in our lupus & vasculitis rheumatology clinic. the consultant was clearly hugely experienced & v proactive + a really good communicator

he is setting me up to start annual IV zoledronic treatments there now (subject to the lab test results of the bloods taken today)...says that if i tolerate IV zol well, this will be 3 years of annual treatments

i'd be very grateful to learn how others have gotten on with annual IV zoledronic treatments

i am reasonably well informed, having read the National Osteoporosis Society info on IV zolendronic, and having studied osteoporosis & its lifestyle management + treatment while having my bone density closely monitored via 3 yearly dexa scans since 2000 meanwhile doing as much weight bearing exercise & bone building diet as poss. but what i'm really hoping for here on forum is replies sharing your personal experiences so i can get a feeling for the kind of reactivity others have managed....e.g. today the rheumatology bone medicine consultant said that bad side effects happen vvvvv infrequently in the course of his years practicing bone medicine. i'm ok with side effects, having had to cope with a variety due to various meds over the decades, but i know myself well enough to realise i do better without rose tinted glasses

[tracynoe]

I was supposed to have one of these on Tuesday but I postponed it due to having a sub optimal vitamin D level mine is currently 56 sub optimal level apparently is 50-75 so I was too low for it to work properly. now upped supplements and re test in 4 weeks

[Barnclown in reply to tracynoe]

Thanks Tracy....so I guess this vit D levels thing relates to my consultant making treatment dependent on my bloods results. Only a year or 2 ago last time my Vit D levels were tested, they were said to be "ok"....I'll look out that actual result now. Glad of your info. So, looks as if we're both having a go at this treatment....

[AnnNY]

I had a good result taking strontium citrate over the counter in the US. I actually went from osteoporosis to osteopenia. When I went to see a specialist in NYC, there were three doctors and me studying my case. The senior doctor surprised the younger doctors when he told me to keep taking the strontium. He saw their surprise, and said, "Well, it's working." As far as I know it is the only supplement or drug which helps strengthen your bones instead of just keeping them from getting worse. Strontium is found naturally in drinking water, and people who have a higher level of strontium in their drinking water are found to have fewer cavities. In Europe there is a prescription drug called strontium ranalate (sp?). One of the three doctors told me that when I asked if I could get a prescription of that, which would actually be cheaper than the supplement. He said, "If you are in Europe!"

Some times asking about something gets you the better thing. All the osteoporosis drugs were scaring me because of the side effects.

[Barnclown in reply to AnnNY]

Thanks ann! I'll discuss strontium with rheumatology. I have with the national osteoporosis helpline...our conclusion was that strontium might not quite be the best treatment for me to try first. Yesterday the consultant felt we should start me on IV zol for a multitude of reasons. I played devil's advocate. He managed to convince me to at least give IV zol a trial....so....if IV zol suits me, the treatment is just 1x per year for 3 years.

I've been studying the controversy re osteoporosis treatments, inc bisphosphonates, for nearly 20 years...my feeling is that at this point in time the downsides of bps are so well known, that any of us receiving them are in somewhat less jeopardy....provided we go into treatment v well informed and ready to change course promptly should problems surface

Because I'm a DES daughter whose health & life has been severely affected by serious birth defects and damage caused in utero due to months of exposure to DES.....I have tended to be very cautious about any meds-taking. For me it's v much a 1 day at a time thing....and I like to have contingency plans...which is where alternatives like strontium come in

So am v grateful for your advice & comments xo

[misty14]

Hi Barnclown

So pleased your appointment at the Metabolic bone unit went so well. The Zolendronic IV treatment they propose is the one I do and I tolerate it very well. Just have to take it easy on the day you have it and they give you paracetamol and or Ibuprofen to counteract any joint pain. Your more likely to get side effects the first time you have it and then it's better subsequent years!. That's been true for me. Sounds like you have a good treatment plan and you will get a leaflet explaining all about the drug and how it's administered. Any other questions please ask. You must be relieved at outcome!. Take CareX

[Barnclown in reply to misty14]

Hooray: I wonder if you can imagine how great I feel knowing you've got this experience. Gives me courage! Hope this treatment continues to suit you well. Many thanks xo

[Hidden]

Hi Barnclown

Are you currently on any steroid at all or were you on steroid previously? I was curious as what were the reasons why you (or your consultant) felt you needed to attend the metabolic bone unit in the lupus & vasculitis rheumatology clinic? I was wondering is this at Guy's hospital (where I visit also). I will be on osteoporosis medication shortly myself. (I haven't looked up the side effects just yet :/) it probably scares me lol xx

[Barnclown in reply to Hidden]

hi omega....i'm sorry but, well, yes, i think these decisions are to be taken v seriously. and it's probably a good thing to be sensibly scared...i say this due to a lifetime with loads of experience taking various meds..... over the years i'm only too well aware that something can be prescribed with the very best intentions by medical practitioners of great good will & integrity, who urge you to persevere although over time there is clearly no apparent benefit and in actual fact it turns out that real harm was being done. (on the other hand, i can also say this about various complimentary & alternative therapies and even supplements & diets & also exercise regimes!). i don't mean to be negative, but almost everything involves an element of risk. so we're constantly making judgement calls regarding balance of risk. hmmm, time to get off my soap box

re steroids: i'm 'lucky' in that my infant onset lupus diagnosis got lost in the '70s when i moved to the uk after my studies. that meant i was hardly ever prescribed oral steroids - and was mainly on topical steroids + NSAIDs and prescrip analgesics, anticonvulsants etc. my osteopenia & osteoporosis are mainly due to genes, but also due to my DES birth defects + needing to avoid exposure to the sun and systemic lupus-caused tendon tightening that severely limited my weight bearing activity. Over the past 2 years I have greatly benefitted from the steroid- sparing regime of 1000mg mycophenolate per day + annually up to 3x 4 week 10mg prednisolone tapers which all damp my neuro cerebral symptoms & tendon tightening down v effectively

i was referred to the metabolic bone unit after 15 years of rheumatology-led dexas monitoring my rate of loss of bone density. this referral was mainly because my chronic upper GI conditions mean i've proven unable to take oral bone medicine. i think my complex of primary & secondary autoimmune conditions also significantly contributed to this referral.

i'm not at guys

am so glad of your comments and input. will hope to pm you soon

thanks xo

[Hidden in reply to Barnclown]

Hi Barnclown

That sounds like you are so well managed under Rheumatology. Fantastic. I agree with you re. side effects in everything you may take. Particularly, ppl with SLE are known for sensitivities to drugs. Thank you for such a comprehensive reply. It does give me such a great encouragement when you say that you are tolerating steroid-sparing Cellcept which is giving you much relief. Mine is probably also "genetic" re. bone weakness. Have a nice weekend xx