Confused

I was diagnosed with Osteoporosis after 3 spinal fractures. They first tried me on AA but it didn't suit me. Then suggested I had Zolendronic Acid infusions. So I had the blood tests for them. Now they tell me my bone tests reveal my bones aren't as bad as they thought, so I don't need the infusions. I'm now waiting for them to ring me to explain. Anyone had this experience?

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  • Hi poemsgalore1

    I've 4 Dexa scans. First 3 some bone density worsened others improved, and it would do that without drugs. I tried the AA and Risidronate. I was contemplating going on the Prolia 6 monthly injection but was worried about this and the Rheumatologist said before considering they would check bloods and do another Dexa scan. On the 4th Dexa scan I had quit good bone density improvement so I was told since there was an improvement and this for the moment bone mineral density stable I could delay trying the Prolia injection.

    Its recommended I have another Dexa scan in 18 months.

    My experience shows that depending what we are doing, diet, exercise etc this can affect a positive change in bone density. But also, bone can deteriorate from one scan to the next as they can sometimes improve.

    The important thing I believe is to make sure your vitamin D levels are good and take extra D3 supplement if your levels are low. The prescribed calcium and D3 supplement won't be enough if you have low vitamin D levels. Exercise regularly and have a good balanced diet to be sure the body has enough of what it needs to build bone and to maintain health.

    I have my vitamin D levels checked every 6 months. When I was deficient they were checked every 3 months.

    I personally have not fractured.

    Hope you manage to keep bone mineral levels stable.

    Would be interesting to get a copy of your recent Dexa scan so you can compare it when you have your next one done.

    Best wishes

    Bkin

  • I also have low bone density and the clinician at the hospital prescribed me Denosumab, he did not discuss the potential side effects with me. So I looked up this injection on line, it is also called Prolia.

    I had a couple of very agressive phone calls from his 'specialist nurse' an African woman called Ada, who was very bullying with me on the phone and insisted I attend the next appointment so she could administer the injection.

    I had concerns about this drug having read that is can cause lockjaw - osteonecrosis, and also that it tampers with your immune system.

    I looked up Amgen (who manufacture this drug) and read that they had been fine $150million in the USA for making false marketing claims. Amgen have also spent £5milliion n the UK this year alone in offering 'incentives' to doctors at hospitals and promoting this drug which was tested on monkey in outer space. If this all sounds like a science fiction I can assure you it is true. Just google Amgen and Prolia or Denocumab and see for yourself.

    The clinician at UCLH was very annoyed when I refused to have this toxic injection. He then wrote me a long letter spelling out the potential side effects, he had not done this in the first place, just arrogantly assumed I would be a willing guinea pig.

    He then called me to ask that I attend the clinic to receive an injection of Zolondronic Acid, another infusion which I discovered had equally toxic side effects. The manufacturers of Zonoldronic Acid happen to be funding lots of scientific research at numerous university teaching hospitals througout the UK so no doubt doctors and clinicians are indebted to them and feel obliged or are under pressure to prescribe these toxic infusions, and as Osteoporosis is on the rise along with the ageing population we are at their mercy, or so they think.

    I would advise everyone to look up these toxic infusions on line, read up on the manufacturers and how they have been fined in America. Read up on how mucch they have invested in the UK either in research or in 'incentives' to the doctors who prescribe these toxic drugs.

    Eat healthily, get some sunshine, fresh air, rest and do some exercise, it is the best way to remain healthy.

  • In UK doctors don't prescribe drugs because they have a pay incentive to do so, they are permitted to prescribe medicines when thorough tests and trials have been performed and the European Medicine Agency and the Medicine Regulating body have assessed the evidence. Also on satisfactory checks NICE (National Institute of Health and Care Excellence) will then and only then recommended that such drugs can be prescribed on the NHS to people in UK.

    There are people whose bone thinning is so severe the risk of fracture is higher to risk of overall health and well being than the risk of taking the medicine would be.

    I'm aware that many people who take Prolia / Denusomab have managed to stay fracture free whilst on the medicine, whereas previously they had experienced many fractures. But it goes without saying some will benefit greatly from the medicines prescribed without side affects and others experience bad side affects.

    nhs.uk/Conditions/Medicines...

    nice.org.uk/search?q=Denosumab

  • I'd add to Bkin's suggestions that you must get a source of Vitamin K2. Unlike K1, the vitamin we all know and love for its blood-clotting abilities, K2 is the vitamin which guides calcium into the bones. It and magnesium are very important for this. Vitamin K2 is almost certainly something you will need to supplement unless all your meat and dairy comes from grass fed (never grain fed) animals. Although your name is very familiar so I'm sure I've told you all this before!

    I've just had my second scan, one year after the first, but do not have results yet. Hope all I did this past year has been helpful (no meds!).

  • Wow. Thank you for the information re prolia/Denosumab. I have osteoporosis as a result of taking prednisolone steroid for 10 years (very low dose now) for sarcoidosis. I have been told by the endocrinologist that I cannot have prolia injections until my Vitamin D level is more normal as it is very low, but sarcoidosis people are advised not to take Vitamin D, so I am not having the injections. I have been feeling very bad about not having the injections, but I now, as a result of your information, I am much happier. I am starting Alendronic Acid once a week instead.

  • If you Vitamin D level is low, you need to have supplements (or sunshine). I have a diagnosis of non-symptomatic and never treated sarcoidosis. This spring I learned that I had a near toxic level of Vitamin D, probably because I'd been advised to take extra D because I was on prednisone for another condition. So I stopped all extra D, and for most of the summer also cut back severely on calcium supplements because they also contain D. I am going to have to convince my doctor to have my D level tested again as she has't been taking this seriously. But in your case, take the Vitamin D to get your level up to a normal level. I'd just make sure that the level was controlled so it didn't go too high.

  • re sarcoidosis and Vitamin D you may find the following interesting.

    file:///C:/Users/Christine/Downloads/Vitamin%20D%20and%20Sarcoidosis%20(3).pdf

    file:///C:/Users/Christine/Downloads/Vitamin%20D_tests%20(4).pdf

    and excerpt from Royal Brompton Hospital, London (which has sarcoidosis clinic) website rbht.nhs.uk/patients/condit...

    Can I take vitamins and supplements?

    You should avoid taking vitamin D, as this vitamin is produced in excess by sarcoid granulomas. Unless osteoporosis is present, we normally recommend also avoiding calcium supplements, although this can be discussed on a case-by-case basis.

  • I agree with you, when the granulomas have activated too much D. This does not appear to be true in your case. A vitamin D deficiency is a vitamin D deficiency. I don't know if the injection is a good idea, I really don't know. Maybe something working a bit more slowly would be a better idea? I'll see if I can find that article again and post.

  • This is the article. You can start by reading the very end, before the bibliography.

    onlinelibrary.wiley.com/doi...

  • it is not possible for me to access the files.

  • Sorry you couldn't open the files - my fault, silly me. They are from the Facebook 'SILA sarcoidosis' site, which has a links to "Files" including info about Vitamin D. The gist is that There are 2 vitamin Ds in our bodies...D 25 and D 1,25 and the D25 is always tested which may show as low, whereas the D1,25 may be OK. There are sites on the internet about this. Type in 'D25 and D1,25 sarcoidosis'. I am not a medical person and have to admit I don't understand it completely!

  • Well, as the D they tested in me is high, I guess I don't need to do anything except not take D supplements and stay out of the sun in the summer. But it sounds like you might want to get the "other" D tested if you haven't already. This whole health thing is a full time job!

  • well, exciting times ahead I think Rheumy nurse rang yesterday' I was supposed to have an appointment with her on Monday to discuss Zolondronic Acid infusion. cancelled now. My Osteoclasts are pretty good and I don't need the infusion at the moment. The risk is, that having the infusion unnecessarily could cause an unexplained hip fracture.

    This morning another phone call. My local Physio are sending someone to give me an assessment for mobility and possibly some exercises. Am I excited? Mmm, I'll let you know.

  • I had a similar experience. The clinician recommended that I have an injection of Deonsumab, without informing me of the possible toxic side effects. I did my research and discovered that it can cause Osteonarcrosis (Lockjaw) and that it 'tampers with the immune system'. I also discovered that the manufacturers of this infusion - Amgen have been very generous in the UK spending £many millions in 'incentives' to hospitals and clinicians. Amgen have also been fined in the States for 'false marketing', a fine in excess of $100 million.

    The doctor then suggested I have Zolendronic Acid. Once again I did some research and found that the infusion had similar toxic side effects, in many cases worse than the condition itself.

    I also read that Novortis the manufacturer of Zolendronic Acid has been very benevolent here in the UK funding many research programmes in University hospitals all over the UK and offering grants. Is it any wonder that doctors and clinicians feel indebted to them, and feel they need to prescribe these toxic infusions.

    novartis.co.uk/sites/www.no...

    We need to question the motives and the ethics of the £multi million Pharmecutical companies and do not allow them to play Russian roulette with our health. We also have to question the motives of clinicians who are so very quick to prescribe these toxic drugs.