Hi everyone. I'm autoimmune ..PMR and Hashimoto's and moyamoya like brain and ..well lots of fun stuff. I also had a Can which was about Z=-3.8 and was supposed to start on prolia about 3.5years ago. I finally got my tooth pulled out which was laying my prolia last August..a year ago. I was deemed too far gove with bone loss for bisphosphonates as they would just make my very tiny thin structure brittle.. or at least that's understanding. I read a lot about Prolia withdrawal and I'm now 64..then 60..so I didn't want to be on it all my life and it seemed better to not start it. I dread to think what my BMD would be as I haven't been too =keen to find out actually.
My problem is I am not exercising properly anymore (though I used to until that Z=-3.8 measurement exercise daily, but a lot was swimming or riding pushbikes which I found out do not build bones...anyway PMR is not too good and I spend a load of time in bed..sometimes unable to roll over or lift my doona. So any suggestions as to any drugs/foods to take at all? I've read about people having their bones just dissolve while standing at the sink washing up..well I knew that person but she was in her 90's, but others on here are having bones collapse.. I have no idea if they have taken bisphosphonates and that has caused their bones to become brittle ..or if it was NOT taking anything. Any thoughts? I am concerned...
One previous fracture in 2015 when had PMR but not diagnosed..when I get too tired I fall, this time I fell and put out right arm to fall on..and broke my elbow in 3 places..honestly the PMR in my arm was months afterwards was worse than the fracture, and I just had to keep wearing the sling to lower the pain...
Since Dec 2016 I have been on prednisone, but I got a script for oestradiol (patch-I used one quarter if a 25mcg patch) and progesterone and I've taken a tiny insy bit of that ..and now have some oestradiol gel..but I am supposed to come off it. I haven't taken any much for the past one and half years. In the first year I did build my BMD back up to Z=-3.2..but I dread to think where it is now. I sort of just forgot about it.( my memory is shot also).
I'm also now on Methotrexate and have no idea what that does to bones!anyone know?
I was osteopenia by age 45 (maybe earlier?) but improved my BMD a lot by Oestrogel and natural progesterone suppositories. (from around Z=-2.5 to around z=-1.5. )....but that was before menopause too. I know oestradiol works but I do have a uterus and all the DNA markers for cancer and all the hereditary too..so the risk is high.
Edited to add: I have just read about looking at HeronNS's post so I will do that but welcome any other suggestions.
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Jan_Noack
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Oh dear, you do have a lot to contend with! Unfortunately we don't get much, if any, choice about which meds to take. Bisphosphonates (Alendronic Acid etc) are the usual starting point, although it sounds like they wanted to put you straight on prolia. You've told us your z-scores (which compare your bones to those of an average person your own age), but osteoporosis is usually diagnosed on the basis of t-scores (which compare your bones to those of an average 30 year old). When did you last have a DEXA scan and do you have a copy of the report, which should give you your t-scores and also a score for fracture risk (eg 10% risk in the next 10 years)? The only other med I've heard some people having some success with is teriparatide (forsteo), but I think you have to be at least 65 for that; it involves injecting yourself daily for 2 years, after which I believe you then have to take a bisphosphonate. Of course with your other health conditions, it's possible not all the meds would be suitable for you, so we're not the right people to recommend anything. You could discuss the options with a specialist nurse at the ROS: theros.org.uk. They have a free helpline and I know lots of people find it very helpful to talk things through with them.
thanks I I hadn't heard of forsteo so will read up on it. I am almost 65 now.. and ccan't lay my hands on the tests just now.. but it was too severe to take bisphosphonates I was told... I just remembered since I posted that I am taking vitK2 now as well..and hope that makes some fdiff. I have always taken some calc with magnesium and sometimes just magnesium..various forms. I take Calium with Gaviscon to after meals for GORD (yeah, I haven't old you all!..also have numerous TIAs (ministrokes) and brain vessels like moyamoya on part of my Inner carotid I think.. and also almost blocked carotid arteries in neck and high cholesterol.. and I refuse to keep going on..LOL JUst wondered if there was anything that may help that I hadn't heard of or anyone had any expeieriece with something they thought helped a lot. I prefer not to swallow something else that will aggravate the GORD either. I have enough problems with aspirin and Prednisone. I'm in Australia...I just love the UK forums (and people) and health unlocked and I'vw been on the PMR site.
I think TIAs and GORD might rule out some medication options. There are bisphosphonate infusions that bypass the digestive system and some people do very well on them. I don't know whether teriperatide is suitable if you'e had TIAs. You can also email the ROS nurses, as obviously you won't be phoning them from Australia! Vit K2, either MK7 or MK4 has been shown to be beneficial, and is claimed to help clear the arteries too. It's also important to make sure your blood Vit D is at a good level, at least 75, preferably 100 nmol/litre (that's 30, but preferably 40 ng/ml).
yes I have always watched VitD. I try to keep it around 80 (+-5) and below 100nmol/Litre.. one thing the UK uses proper measurements! I worked out reading a vitD article on here about the Us measurements being about 30-40 ng/mL. It's great to meet up with someone who understands there is a diff!
i am currently taking either 5000IU of VitD3 or today I took 10000IU per day. (get from iherb in the US as you cant get that high in Australia). I will stat lowering I think..though last VitD I was down at 40 ? and I don't know how as I was in the sun every day. I think it's due to the inflammation or viruses using it all up. I have observed this happens, as when my Dad had a sever infection and was in hospital they injected him with some huge dose and also (mistakenly) put him on 2000IU daily as well... I was a bit concerned and measured his level in his blood when he came home from hospital. t was only 30 nmol/L. I couldn't believe it , but he had used it all up! I would have thought he would have absorbed the injection.. even if not the tablets. So if you have COVID or some viral or bacterial infection (he had bacterial) it does seem to consume it.
I am taking the VitK2 MK7 as we'll as aspirin. One doctor in a hospital told me they wouldn't interfere with each other. Hope he's right. I do realise they have a different mechanism of action ..which is what he was getting at...
I've read that Hashimoto's can cause Vitamin D deficiency. What does your doctor say? A reading of 40nmol/litre is too low for bone health, and surprisingly low if you've been taking such a high dose of supplement. I discovered a couple of years ago that I don't absorb much from the sun - that's something that can be a problem for us as we get older (I'm about the same age as you), but other factors play a part too, such as skin colour and the time of day/year you're in the sun.
My doc wouldn't know if Hashimoto's caused vitD deficiency but my Vitd levels have always been fine up until now I try to keep between 75 to 90..or 80 is my aim. I've had hashimotos at least for 25 years so I would have expected some trouble before this if it was that. I wouldn't be surprised if inflammation chewed up the vitD though. I have light skin (Irish/german/English/Scot) so no worries there at least as far as vitD production goes.
That does seem a huge drop if your level was previously around 80. Maybe just a blip. Can you get your level tested again soon to make sure it's gone up again? If your level stays around 40nmol/litre, that may be damaging to your bones as Vitamin D plays such an important role in calcium absorption.
Wow! Great info. I'd like new suggestions too. I'm 74 & am taking nothing. T-scores are awful. I was told to take eggshells and have some prepared. It's not pleasant, but I hear it's pure calcium. You keep eggshells in fridge after using, eggs. When I accumulate around 2 to 3 dozen, I clean them and let dry. Then bake at 200 degrees in broken pieces. I then use a coffee grinder to make into powder. Works great. 1 tsp is what I take, when I do take it, which is irregularly. I'll be due for bone density test again in December. Have been approved for Prolia for years by 2 docs, but I've refused. My mom, 96, took one dose without my knowledge and had a HORRIBLE hip and back pain attack. She lives in another town and called me to come. At the doc she happened to mention, "I don't like that stuff I took. That shot." I said, "WHAT shot?" Though the pain was mis-diagnosed, she finally got better after a visit to another doc. They never admitted it was Prolia that caused her horror! She and I figured it out after lots of online research, most of which I had already learned.
The "evidence" is based on Swedish intake of calcium. However, I understand that Swedish milk used to be fortified with Vitamin A, too much of which is damaging to the bones. Other experts have therefore refuted this study due to the much higher Vitamin A intake that went along with higher calcium in the Swedish diet.
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