Help, should I take Bisphosphonates? I've heard horrible stories about them.

[susie193]

I'm too scared to take Bisphosphonates that were offered to me by my GP and recently by a consultant. I'm still waiting on blood test results to see if there's an underlying cause of my osteoporosis. I'm scared of taking Bisphosphonates because I'm heard horror stories and I've watched some youtube videos by Mr Berry about them and how they don't actually strengthen the bones just increase bone density not meaningful bone strength. My DEXA scan back in 2019 showed -3.3 and been told it's probably worse than that now.

XR report: XR Thoracic spine 07/02/22

There is a grade 3 vertebral wedge fracture noted at T5

There is a grade 2 vertebral edge fracture noted T8

Appearances are consistent with a history of osteoporotic

insufficiency fractures and existing vertebral wedge fractures seen in

the lumbar spine.

I started taking HRT patches two months ago.

Does anyone have any advise for me, I'm really worried. I'm 52 and I also have Ulcerative Colitis and had to have my colon removed.

[Pte82]

susie193, I shared this with others. My mother had osteoporosis and broke her right femur when she tried to stand. She was following her doctors order to use calcium and vitamin D. I researched for a possible answer although her doctor said she's 83 and can't put bone on. I didn't accept that and learned magnesium is needed to balance calcium and activate vitamin D. In addition bovine bone from New Zeland offered bone building benefits. I included boron, silica and different forms of calcium and started what I hoped was a recovery. I found juggling all these supplements difficult for her and looked for a single product integrating them. I found a New England company called Pioneer Nutritional that had a non-vegetarian calcium magnesium product that included the supplements I was giving her. A bone biopsy about a year later showed she was building bone so the doctor was wrong. I have since learned delta tocotrienol offers benefits for ulcerative colitis and is a bone builder too so coupled with boron and the other supplements it offers you an important addition to strengthening and building bone. Always consult your health care professional before using any supplement.

[Noosat]

recently my new GP recommended this for me. However, I declined as I checked with Mayo Clinic site which informed me that it would be detrimental for other illnesses that I have: a gastric ulcer, a damaged (slightly) esophagus. Also my daughter had heard some anecdotal reasons not to take one of these medecines.

I;ve decided to continue with vitaminD and magnesium, Our bodies are not all the saame and I also take age into consideration what a 74 year old might take is not necessarily good for a 94 year old.

[susie193]

Thanks for the replies. I forgot to put my age, I'm 52. Just a quick update really, I ended up trying the oral 70mg alendronic acid and I got an allergic reaction to it so I only took the one dose. Got itchy rashes within an hour of taking it, no way it could have been anything else that caused it. Told my consultant's secretary and she didn't even bother coming back to me. So I'm just going to continue with the HRT and having a bone friendly diet and I'll be building up my exercise as my fractures heal.

[Floridagramma]

Don't take the Bisphosphonates until you have done all your research. Don't listen to here say from others. There is a lot of information on the internet and if that doesn't work for you go to the library. Bisphosphonates have many bad side effects. You didn't come down with Osteoporosis overnight so take you time and first try to learn what is causing yours. Sometimes it is related to hormones or medication side effects, or parathyroid issues, etc. Try to improve your bone density naturally if possible. Best wishes.

[susie193 in reply to Floridagramma]

Thanks for reply. I'm not going to take them, they're now trying to get me to take Prolia, but I'm not going to take it. I had another dexa scan and it showed an improvement though they said it could be a false positive because of the spinal fractures. Also, found out I have hypothyroidism from the blood tests so now I'm on Levothyroxine, starting on 50mg a day, can't really get out of that one. So I'm hoping that since I'm taking HRT patches and the Levothryoxine and eating healthy (bone broth etc) I will improve my BMD without biphosonates. 👍

[Nusch in reply to susie193]

Please, on top, be aware that if you start Prolia you can’t stop it any more. If you stop Prolia, you have to take Bisphosphonates for the rest of your life.

[Raleigh59]

yes I heard gluten and dairy free helps colons

[DiscoLover]

Hello, I just joined this Support Group and saw your post from 2 years ago. How are you doing with trying to increase your bone density without taking a Bisphosphonates? Have you had any more fractures? I can relate to you as I was diagnosed with Osteopenia at the age of 50 and by the time I was 54 it was very severe osteoporosis. I am 56 now. I have opted not to go on any osteoporosis medications because of all the side effects they cause and after reading all the reviews online from people who have been on them saying that they are all poison and they ruined their lives and made there osteoporosis worse. My doctor tried to scare me into taking the medications by saying I could “snap a bone” at any time but I a going with my decision to try to keep my osteoporosis from getting worse and hopefully make it better with weight bearing exercises (ones that are safe for someone with severe osteoporosis) and taking supplements that include calcium, Vitamin B6 and Vitamin K2 (MK-7). At least my doctor did a massive amount of blood tests to see if there was an underlying condition that would have caused me to develop such severe osteoporosis at such a “young” age of 54. All the tests came back normal. I think it was due to malabsorption of nutrients due to the fact that I had 6 inches of my colon removed 26 years ago when a very large benign tumor growing on my colon was discovered. No doctors told me back then that losing part of my colon would cause malabsorption of nutrients. I specifically remember asking my doctor if this would affect anything and him telling me that it would not. This is why I don’t trust doctors anymore. If I had known this back then, I could have taken extra supplements or changed my eating habits to make sure I was absorbing the nutrients my bones needed. I also would have been monitoring my bone density at a much earlier age. Now, I have to deal with this condition when it might have been prevented. You say that you have ulcerative colitis and had to have your colon removed. My personal opinion is that removal of your colon caused malabsorption of nutrients just like what happened to me and that is why we both suffer from osteoporosis now. I hope you are doing well. My journey is ongoing and I am hoping for the best. I have not fracture a bone yet. Fingers crossed.