Hi. Can anyone offer their experience of using HRT to help build bone density instead of the usual bisphonates ?
I have had a REMS scan recently which shows similar (spine) and higher (hip) T scores than my DEXA although the strength of my bones is very good according to the REMS. I have a very low body mass index which most probably accounts for the low bone density and osteoporosis.
The recommendation mentioned at the REMs appointment was to enquire about taking HRT gel treatment instead of the bisphonates. Hence my question. I am keen to try anything other than bisphonates.
Thanks to any feedback and experience about this.
Stillmovin x
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Yes I'm also interested in whether HRT could help or not. The doctor suggested that it might help a few years back but I always seem to go through life avoiding taking anything. Also there may be problems when coming off of it later on in life. Apparently you have more chance of problems coming with more severity. I feel as if I'm too old for HRT at 63 but apparently you're never too old! How old are you? What were your scores?
Thanks Y3she and I’ve given more info on my case below. Hopefully will get a positive reaction and info from the rheumatologist when I see them next week. Will let you know.
Hi stiilmovin, I have had more or less the same experience. My BMI is not low, but the rem scan showed osteopeania rather than th osteoporosis shown by the DEXA scan. Like you I did not want to start on biphosphonates and am trying HRT and resistance training. I also take ADCALand magnesium. I will have another REM scan in a year to see if all this has improved my BMD. If it has improved I will carry on, if not I may start on the biphosphonates. I’d love to hear what you decide to do. Best wishes.
hi HettyR I’m glad your REMs scan showed better results and would like to know how you take your HRT (tablet or transdermal ?) and also your age, if you don’t mind.
Good idea to have another REMs scan in a year too, they are more accurate. Thank you.
I take one progesterone and 1 pump of estradoil each night. I tried 2 of both but that didn’t agree with me (sore boobs/ a littestomach cramp) so I stuck with 1 of each. Am considering going to a hormone clinic to see if the dose I am taking is having any effect. Best wishes
Hi I took HRT from the age of34 upto my mid 50s….I had no problem with HRT in fact it was great! Now I am 63 I am unsure if I could take it again? I had the most horrendous problem with bisphonates, jaw came away couldn’t walk talk or eat for months only just recovered from the episode after 9 months. So I would be very interested to learn if it’s an alternative. Please keep posting your experience on this.
thank you Sowen I shall let you know how I get on. I’m not expecting the rheumatologist to be too positive about HRT treatment and to push the bisphonates instead. I’m sorry you experienced such awful side-effects and glad that you have recovered from that. Take care.
Hi Sowen59. I was in the same quandary as you. I was on hrt after a total hysterectomy for 25 years. My gynaecologist told me to stay on eostrogen for life. I wish I had listened to him but I was persuaded to come off by my GP after the studies came out which have since been shown to be flawed. I studies and talked with the nurse at the Royal Osteoporosis Society who was excellent. They now have hrt as one of their recognised preventative treatments. I watched a video conference, sorry can’t remember the source . It may have been on PMR/GCA. The dr said it is OK to restart in your 70’s, which is what I have done. I will do another REM scan when I have been on it for a year.
hi that’s very interesting…..I am waiting on a consultation with a jaw specialist, then I will go back to my consultant, then I will discuss the HRT route…I can’t face another reaction to meds.
Please let me know how you get on with HRT…..I never wanted to come of it as I felt so well.
I will update. I have only been back on for 5 months, so I will have a REM scan after a year. I haven’t noticed anything since I started, no side effects or miraculous recovery 😫. But I am taking it for bone health so hoping it’s doing it’s job silently in the background.
Good Luck with it… be patient I believe it takes a while to re build our bones whichever route you take and for some people it’s an achievement just to halt the decline in their bones . My fingers are well and truly crossed xxxx
I was diagnosed with osteoporosis in April but so far have resisted taking any medication. I asked about HRT but my consultant didn’t think it would make any difference as I am 71 and my doctor refused to prescribe it. I am taking supplements including collagen, vit D, K2, Magnesium and Zinc.
Thanks Teddy turbo for the info. I’m also expecting some negative remarks from my rheumatologist about HRT treatment next week but really don’t wish to take bisphonates for all the obvious reasons. I hope you do well on the natural treatment path. I have not had good results that way unfortunately. I have filled in more background info on my case above. Take care.
After reading about as little as 1mg of estrogen is protective of bones ,I asked my doctor for it but he refused and instead wanted to put me on bisphonates saying I am too old at 71 and he thinks taking estrogen carries a risk of breast cancer ,I have since fired that doctor and am going to experiment with taking red clover extract which contains Isoflavones ,plant based chemicals that produce estrogen like effects in the body, I'm hoping it will be beneficial as I have virtually no estrogen, some times we have to be our own doctor,I also take calcium,vit C, vit D,K2 and collagen.
Thanks for your reply Lorlei. I have added more info on my case to this post. I have been trying to treat myself naturally but it obviously hasn’t worked over the past few years so the osteoporosis could be due to Ehlers Danlos Syndrome or my epilepsy meds. I have to explore all these aspects. Take care.
I have been on some form of HRT since early menopause at 42. I am now 69 and recently switched from oral HRT to transdermal. I have had osteopenia for decades but a recent dexa showed osteoporosis with -2.5 femoral hip. Glad to hear of someone my age on HRT.
Sorry you have severe osteoporosis in your spine. I have been given that diagnosis too. HRT is hormone replacement therapy. It is a possible option in treatment of bone density. You have to enquire about it with your doctor or rheumatologist if you have one. Or also the nurses at the Royal Osteoporosis Society. This is what I shall be doing too. Take care.
Hi i gave been on prolia for a few years with no side effects other than dental problems recently my hair has started to fall out and have now found it is probably the prolia that has caused it. Can tou tell me what effects you had
Hi stillmovin. I started back on HRT, low dose patches, 6 months ago. I agonised over the bone protectors as I am allergic to Alendronic Acid and didn’t want more pills with yet more side effects. My REMS showed osteoporosis, scores weren’t too bad. I have been on prednisone for seven years for relapsing PMR.
I talked to a very well informed kind nurse from the Royal Osteoporosis Society. She told me that opinion had moved on from the damming studies that associated HRT with cancer and heart problems. They have a document on their site. I also watched one of their videos, sorry can’t remember the Dr. He said bone protection was a valid use of hrt and that it can be prescribed at any age but it was mostly useful in younger menopausal women. However, if you had taken it before it was fine to restart.
I had a total hysterectomy at age 40 and had been on it for 25 years until I was persuaded to come off it because of the studies. Coincidentally or not that was when my PMR and all the other degenerative bone problems started. The dr in the video said it was fine to restart if it had been less than 10 years. Since then I have found that several of my 70 plus friends are taking it in the vaginal gel form.
My rheumatologist is disgusted at my choice, but he is totally obsessed with the usual drugs. He also refused to do a Dexa scan saying they were unnecessary as I would definitely have osteoporosis on pred.
I will have another private REMS next year so we will see.
hi Nightingales and thanks for sharing your experience in using HRT. I will be trying to make enquiries with the rheumatologist at my first appointment next week but I am preparing myself for them trying to suggest some bisphonates which I am really unhappy about using. I agree the REMs scan is more accurate. Unfortunately it doesn’t always show us better results, but I was prepared for that fact too. According to the BMD figures I have severe osteoporosis but according to the bone fragility statistics (shown at the REMs scan appointment), I have good strength in my bones, for my low BMI.
I’ve been using estradiol in compounded, cream form for at least 10 years. Briefly during this time period, I used a 25 or 50 mg. patch but for a shorter duration. Too worried about breast cancer, heart, etc. It’s even more critical to use progesterone when on these higher dosages due to potential for uterine cancer. In the U.S. anyway, there is a 14 mg. patch called Menostar that was formulated specifically for helping bone. Used it for maybe a year or so, when spouse’s insurance made it somewhat affordable. It is terribly pricey so have reverted back to compounding pharmacy and pay for it out of pocket. Use this at night on inner thigh and try to monitor my blood levels of estradiol so that they stay in the mid-range of normal for post-menopausal. The prescription that I used for years was no longer getting me up to this range, so about one year ago it was made somewhat stronger. I also use a very low dose testosterone cream in the morning also for bone density. Progesterone is suggested to be used at least every 6 months for a couple weeks. This protocol was from a JAMA article that I still have somewhere in my mass of paperwork.
My July, 2022 DEXA showed both total hips at -1.3 (left) and -1.4 (right) while spine was -1.2. Oddly, my femoral necks are identical at -2.5 and BMD of .576. Since my doctor wants to put me on a drug, I have requested she ask for a new reading of the femoral neck. Having had DEXAs for 21 years with my 2001 report at -1.4 for total left hip and -0.2 for spine, I’d say that HRT has positively contributed. So has intensive amounts of exercise including interval running, weight training videos, walking with weighted belt or vest, kettle bells, a two story house, 13,000+ steps per day. I refuse to believe that the DEXA at neck is accurate given I’m short and smaller framed. My hope was to get a REMS done 3.5 hours away, but in my home state, but they stopped doing those just 2 weeks ago, excepting established patients. I am almost 67 and have started recently doing jumps, hops, side lying, weighted leg lifts, just in case the neck reading is accurate. I also do a yoga, balance video.
thanks Weightrun. Your scores look fine to me. And the exercise regime seems to be doing a lot of good too. I’m wondering why you have had to have Dexas for 21 years if that was prior to going on to HRT? Have I got that wrong? Did you ever have osteoporosis t scores or just borderline? Sorry I am confused on that point. Good work on the exercises though! Well done! X
Apologies, it’s hard to be concise and still give information that is easy to follow. I’ve been on HRT for approximately 10 years with estradiol topical (mostly) or patches (less than a year) more or less continuously. Also tried testosterone alone prior to that but hard to say if it was helpful. We never know what density would look like if something wasn’t done. I was able to get annual DEXAs until reaching age 65, now every 2 years. My Endocrinologist and GPs were okay with the HRT since it was such a low dose. Any gynecologist was very concerned and warned against it. These small amounts do not help with other menopausal symptoms, only bone density. Progesterone is absolutely necessary more frequently if you go on higher doses than the 14 mgs/day I use and it is a good idea to monitor blood levels. It is frustrating to have to engage in so much activity and get so little return. At least you’re “Still Movin”!
Hope you find someone to assist with your other questions.
Thanks to the replies I received to my query. I am going to get back to each post but just to give more info on my own case:
I am 62. No children. I have Ehlers-Danlos Hypermobility Syndrome so am quite slim for my height of 1m64 and quite leggy and army … long legs and thin bones. So my Body Mass Index is 18, when most people of my height would have a BMI of 28. This is very significant as it means that I have slim thin bones and osteoporosis is common in Ehlers Danlos Syndrome. Also, I have been on Tegretol Prolonged Release tablets for epilepsy for many years and there’s a known link with carbamazepine and osteoporosis, so that is another challenge for me, which I am discussing with my neurologist.
I have had three DEXA scans following a hairline fracture in a metatarsal bone in 2016. They started as osteopenia, and my latest one, in March, showed t scores of -3.2 spine and -1.4 femur. So, the Osteoporosis diagnosis was given. The disparity between the hip and spine results made me suspicious so I had a REMS scan this week. This showed higher hip scores of - 3.2 and spine -3.3. The REMS scan is deemed more accurate than the DEXA. I was also recommended enquiring about taking HRT transdermal treatment instead of bisphonates with my rheumatologist who I shall see next week.
I have been following a careful natural bone-building lifestyle (no bisphonates) for the past few years, including using a weighted vest, daily walks, dumbbell exercises, stretches, Vit k, d3, c, fish oil, boron, Adcal, magnesium supplements. And a careful diet. Despite this, my t scores have increased.
Are there other Ehlers Danlos folk out there who have osteoporosis and very low BMI? Is anyone of my age about to start or has recently started HRT for osteoporosis instead of bisphonates ?
Just to say that if you have had a hysterectomy then oestrogen only HRT is recommended, progesterone is not needed. I started using estradiol patches earlier this year after menopause symptoms started due to a total hysterectomy. I had a virtually symptomless menopause years ago and didn’t take anything for it. It was about the time of the adverse publicity about HRT so probably wouldn’t have taken it then anyway and, as far as I know (not very far😀), it’s only fairly recently HRT has been used for bone health.
An update on my self treatment that may be useful ,I tried red clover tabs and didn't feel any effect it may be not long enough time and I am not sure of how much estrogen I would be getting.
So I tried a cream that delivers 750 mcg of estriol with each pump ,it has only been two days but the effect has been dramatic,I was developing arthritis in the knees it was painful to walk and after applying the cream there is practically no pain I'm thinking if it had such an effect on my knees then surely it must be doing my bones some good, it is only a small amount of estrogen less than 1mg and I have read that is all it takes to have a protective effect on bones.
Let us know what the rheumatologist thinks, I saw an endocrinologist some 20 years ago who put me on HRT patches and it did increase the BMD according to the Dexa scan but it near drove me mad I can't remember what the dose was but I think it was too high .Dosage is some thing to consider ,so far I'm ok on the low dose.
I have taken some form of hormone replacement since my early 40s. Now at 69 my score at the femoral neck has slipped to -2.5. Until I see the endocrinologist in January I plan to increase my walking and add strength and balance exercises. I did switch from oral to transdermal HRT in an effort to reduce the risk of blood clots.
thanks DinahM. May I ask why you are seeing an endocrinologist? Is it related to your osteoporosis? Also, how much hormone does the transdermal HRT contain & is it both hormones? I’m just getting ready to see a rheumatologist tomorrow and I want to ask the right question. X
I was referred to the endocrinologist to test for hyperparathyroidism as a possible cause for osteoporosis. As it turns out I don’t have hyperparathyroidism, so the endocrinologist is now treating my osteoporosis. I don’t see him until January when I will propose staying on HRT and postponing osteoporosis drugs. I recently switched to CombiPatch DosageGeneric name: ESTRADIOL 0.05mg in 1d, NORETHINDRONE ACETATE 0.14mg in 1d. It is both hormones and you use 2 patches a week which does make it more expensive. I chose this because my skin often reacts to adhesive, although I have not had any skin reaction to CombiPatch.
Thanks for the info Dinah. I will see what the rheumatologist comes up with tomorrow. Hoping that it will be ok for me to try the HRT treatment rather than bisphosphonates medication.
Hi Stillmovin I have increased my bone density since being on HRT. In 2019 I was -2.7 hips and -2.9 spine. I have had a dexa and a REMS in 2019 and they both gave same reading. I started HRT 15 months ago and my scores on the REMS is now showing my hips have not changed but my spine is now -2.3 so now in osteopenia. I was told that the spine is faster at building bone than hips. I am 66 years old. I hope this helps.
thank you marigold and I’m pleased to hear of your better results.
I have had a rheumatologist consultation and another GP talk, as well as a balanced opinion from the Royal Osteoporosis Society specialist nurse about using HRT transdermal and also taking bisphosphonates. This is all because of my search for more info on taking HRT instead of bisphosponates. All these people have reminded me of the breast cancer risks for my age group of taking HRT (including transdermal). As my sister has had breast cancer I have decided against the HRT option.
Yes, the breast cancer risk is disconcerting. My endocrinologist reminds me of it often. I don’t think he would prescribe HRT. It is prescribed by my primary care. I can’t take bisphosphonates due to acid reflux. Good luck to you.
Hi Stillmovin I am 70 , 5 years ago I broke my wrist and was offered a dexa scan results showed Osteoporosis in my spine -3.9, Hips etc Osteopenia, was prescibed Aledronate Acid which did not agree with me. I have just had another DEXA showing my spine is now -4.4 but hips etc still Osteopenia. Did not want to take bisphosphonates went to my doctor armed with all the information I could re HRT gathered from the internet and the Royal Osteoporosis Society, and last week was given Evorel 50 patches and Ultrogestan 100 I did have a reaction to the Ultrogestan , tired, achey bones and period type pains ater 5 days so stopped all medication today is the first day I have been pain free. Wondering what to do next .
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