Two weeks ago I had a two year follow up scan and was sad to learn that my spine had gone from -2.3 to -3.2 and my hips had fortunately stayed the same -2.8.
ive had osteoporosis for seven years and was on Alendronic for five, had two compression wedge fractures. Then had one Denusamab jab before the consultant changed me on to Teremethapine (excuse spelling) . That didn't agree with me so for the past year I have taken nothing. I'm 73, do plenty of excercise and feel pretty good but now I'm being encouraged to take either Zolandronic, Ibandronic or Denusamab.
I've frightened myself so much with what I've read of side effects could somebody please give me something positive about how they've been on these drugs.
Many thanks.
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Messyme17
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I'm so sorry to hear that Messyme, I'm having my 3rd Zolendrate this Wednesday t I haven't had a recent DEXA, so I hope it's working I have spinal fractures at L1, L2, L3 and T12 in spite of the fact that my 2nd DEXA showed I was only Osteopenic.
Thank you so much for replying. Sorry to hear you fractured with Osteopenia 😟.
I guess you have been fine on Zolendrate as you've carried on with it.. That was the way I initially thought I would go, then I read all the scary stuff, what do they say, a little knowledge is a dangerous thing!! 😥
The advice I was given was to drink lots while having the infusion, water, tea, coffee etc. I had about 5 days of aches in my thighs after the 2nd one but Ibuprofen gel helped.
Hi, I was given zelondronic acid infusion last march in hospital. So far no side effects. Hopefully it's working, not looking forward to my next , and would like a dexa to c heck but have been told that wont happen. Good luck with whatever you decide.
I have had osteoporosis since 2010 I have never had meds as they grow inferior bone, I stopped using milk as the casein takes calcium from bones also stopped taking calcium supplements (does not work), I take 1 tsp Borax each day (watch youtube) for 5 days Mon to Fri then stop till following Monday and one tsp Living Silica with meals every day. Have osteoarthritis that never bothers me anymore and don't have problems with osteoporosis. watch and learn youtube.com/watch?v=-mc4VBx... Share good luck
I've now watched this and found it so interesting and what he says sounds common sense. I'm vegetarian, not vegan, as just cannot give up cheese as found the vegan versions not to my taste. So much info was unaware of i.e. cooked tomatoes, as that is yet another of my favourites!
Of all the alternatives to dairy milk my personal choice is now oat milk, even in tea, as tried and dislike most of the others.
Thank you for that is very interesting. I didn't think I was getting enough calcium from my diet as I eat very little dairy produce and added some low fat cottage cheese and low fat Kefir yoghurt to my diet. Since then I noticed my dry eyes, I have Sjogren's Syndrome, e becoming more irritated and I read this on the Dry Eye Syndrome website. I have also read some other very negative reports on the effects of calcium. Makes me wonder what on earth I can eat than doesn't have some sort of effect.,
"Humans are the only animals on the planet that consume another species’ milk. Cow’s milk is a fairly recent addition to our diets, and milk protein is hard for humans to digest, if they can digest it at all, which triggers an autoimmune attack and inflammation in the body, which includes dry eyes".
I find it hard to believe your spine would have lost so much bone in 2 years while your hips stayed the same! Average bone loss is about 1% per year, yet in 2 years apparently you've lost about 9%. Unless stopping meds resulted in rapid bone loss in your spine but not your hips, it doesn't make sense! There's a margin of error in bone density scores, so it's possible none of the measurements are accurate; but DEXA scanning is also open to error. Did you have both scans done on the same machine? It isn't possible to compare results from different machines (which in itself shows the results can't be totally accurate!).
It does seem strange, but I have the report and that's what it states, although further down it reads "No significant changes to the BMD since last scan in 2017" which makes it all very confusing. My spine Z score is -1.5.
It was done at the same hospital but they had a brand new scanner and it states that comparisons slightly less accurate and changes treated with caution.!!
That explains it then! Different machines, different results! Are you in the UK? If so and you can afford it (£150), there's a new technology using ultrasound - a machine called EchoS - which is much more reliable. It's based in the Midlands but they do have clinics in a variety of locations: osteoscanuk.com/. I posted about it last month, 18 months ago I was told (after a DEXA scan) my spine score was -3.6, hip score -2.5, but with EchoS last month it was -2.6 for both. There's no chance of operator error, wrong positioning etc, and as far as I know you can compare between different machines (though at the moment I think there only is the one). It does still have a margin of error, but this is fairly low (I thought my hip had got slightly worse, but they said that, allowing for margin of error, that would be considered the same score as previously).
They're based in Northampton, but have occasional clinics in 11 other places, with other venues being considered. Here's a link to the current list: osteoscanuk.com/clinics
I belong to a support group and know at least 6 people regularly having Denosumab injections without any problems. I only know one person who had a nasty reaction. It's only the problems that get talked about a lot; if it's OK people just get on with their lives.
You do need to be aware that if you take denosumab, when you stop it it's recommended to go straight onto another osteoporosis medication to reduce the risk of rebound fractures.
Hello Messyme17, from Australia. My husband has just had his 7th Prolia injection. Our practioner suspects protein pump inhibitors, prescribed for his hiatal hernia/aesophageal pain issues to be the real bone thief. Another Big Pharma success story! (A double whammy for my husband ~ Nexium & Prolia!)
His Dexa scans have shown steady, small improvements. And you're right ~ there is a lot made of the negative aspects to injecting Prolia. And while he would dearly love NOT to be reliant upon denosumab, he's had no serious side effects, thankfully. Just a crawling, itchy sensation across the skin on his mid back, post injection, and just for a few days. BUT BUT BUT he also feels he has contributed to his success by closely following the guidelines of Dr Vivian Goldschmidt from the saveourbones.com website. Very comprehensive info and advice ~ easy to understand ~ constantly suggesting excellent up-to-date offerings re nutrition, diet, exercise and a little science thrown in.
It’s changed the way we look at food, and we've never been better. (There was always too much dairy!)
Your scans will improve with Prolia ~ fingers crossed no ill effects ~ but there is much you can do to improve bone health. Best of both to you!
Many thanks Salsal. Glad to hear your husband is making small improvements despite everything.
Luckily I am otherwise fairly fit for 73, get plenty of exercise, even aerobics, line dancing, walking and gardening. BUT yes my diet could be better, although as I don't like milk, don't consume much of that but cheese is a weakness!
I still have no idea which way to go!
All the best to you both.
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