What if you cannot tolerate any osteoporosis drugs?

@tkdesign
Our stories are very similar, I’m so sorry you are going through this.
I have been on 5 different osteoporosis meds since 2018. And had side effects from all of them, some severe.
I am 65 and started HRT 6 weeks ago, I am having side effects, palpitations and dizziness.
Sometimes I think that because I have a few autoimmune conditions, I am unable to tolerate any of these meds.
Funny thing, I take a statin and have never had any issues with it, however, I hear about many that can’t tolerate them. Go figure.
I don’t expect to grow much if any bone on HRT, but I’ll be thrilled if I can remain stable.
Have you experienced any side effects from HRT? What side effects have you dealt with on osteoporosis meds?

The more I read about connective tissue disorder the more huge it seems. It affects so many things! I do not have it but my cousin has Ehlers Danlos.

Would a university medical system focusing on connective disorders maybe have better answers even if your main focus is your bones? Sometimes you can get a second opinion on treatment options, sometimes just be submitting your current scans &/labs online, and it isn’t always too terribly expensive.

Here’s what comes up with a web search:
Several university medical centers and hospitals have specialized clinics and programs focused on connective tissue disorders, offering comprehensive care and research. Massachusetts General Hospital has a Dermatology-Rheumatology Connective Tissue Disease Program. University of Minnesota has an Autoimmune Connective Tissue Diseases Specialty Clinic. Vanderbilt Health has a Marfan Syndrome and Connective Tissue Disorders Center. Baylor College of Medicine has a Pamela and David Ott Center of Excellence in Heritable Disorders of Connective Tissue and Ehlers-Danlos Syndrome. Mayo Clinic has a Connective Tissue Disorder Clinic.

I will tell that you have to give HRT a long time to settle in. It probably took me a year at least to find the best stable regimen for me, and it will differ for everyone what level of hormones you feel best at. It also differs what you need if you have a uterus/still bleed or not. I've endured a lot of side effects from the hormones, but the effects of menopause were so awful on me it was worth it. I have not had gains or stability of my osteoporosis in the spine unfortunately. I was really hoping it would work. I want to use one of the bone building drugs because my density is so low...I've tried Evenity and Tymlos so far. Had awful insomnia for a full month on Evenity...i literally could barely sleep for a month, and it also gave me tooth pain. On the full dose of Tymlos I had horrible migraines and just a really sick flu feeling. I'm trying it at a lower dose now, but am not sure that will work or give me the same improvement. I've had awful gut problems from the anti resorptive drugs, and will not risk more fractures from these meds.

Thanks so much for your reply.
I took Forteo for a few months, besides the chest pain that lasted about an hour after each injection, I felt like I was run over by a truck. Apparently it raised my calcium to dangerous levels and I had to stop taking it.
The first drug I was prescribed was Prolia. I became extremely sick, many infections and I lost 50% of my hair, the Prolia triggered an autoimmune condition called lichen planopilarus, which causes scarring alopecia.
I also suffered 6 pelvic fractures afterwards, these were rebound fractures.
My thoughts are that my body has to adjust to the hormones especially since I am 15 years post menopause.
I’m also thinking do I really want to go through any of this if it’s not going to help with the osteoporosis???
I had no menopause symptoms, I’m only taking this for bone loss.
I never want to fracture again.
Have you fractured?
So difficult to make all these choices about what path to take.
I’ve been dealing with this since 2018, and I’m tired of it.

Oh so sorry. That sounds so awful 🙁 I get angry to hear this...these drugs can be dangerous and not enough care is given in explaining risks.
I can share some drug horror stories...not osteoporosis drugs, but I suffered some really terrible outcomes from steroid injections given for pain from an injury. I lost teeth, I developed new allergies, got a fungal infection, ended up with stomach surgery...nightmare. I don't think drs know enough about what they are prescribing...some do, but you really have to do your own research I found.
And they don't ever consider size, weight for doses, or male vs female, etc.
I started hormones number one to help at least slow bone loss, because i knew i already had it. I knew I had a hard time with drugs. I wish I'd started sooner really...I think hormone imbalances were affecting my bone/muscle for years even before menopause symptoms really kicked in. They don't teach women well about any of this! Most drs are severely misinformed or have no idea how hormone loss affects every body system.
HRT helped me with sleep, energy, brain fog, heart racing, lowered my cholesterol..the works. But it was a rough road finding the right mix. And I may need to change it again down the road. I've read it's beneficial to start at any age, even if only a very small dose. You start small, work up. There's so many great videos and experts and forums and podcasts out there for menopause, and they do address many topics regarding this. But certainly it's not for everyone.
No thankfully I've not had a fracture...I hope I never do. But I do have a connective tissue disease with weakened fascia, muscle, bone, dura of the spinal cord. I've suffered chronic pain since my early 40s. I had spinal surgery last fall for a nerve root cyst impacting my bladder, causing pain, and pain from that trying to heal. It's hard to stomach taking another medicine to add to the pains you've suffered for so long.

Hi again. Following on from last post we must keep on trying with the BHRT as it seems like our only hope. I am desperate for it to work. My clinic who specifically deals with HRT has recommend to just do the Utrogestan for a short while then introduce the estriadol gel slowly by half a pump T a time until used to it then gradually go up to one pump . Possibly add the testosterone in a month or or so after that . Maybe that will help with the palpitation and dizziness we are getting . I am also in pain constantly with the SI joint nerve pain so dealing with that also. Slightly hyper mobile ( EDS) .

Please see post I sent to tgdesign. It was meant for you also

Tiny28,
Thanks for your reply. I’m getting the feeling that what you are saying is absolutely correct.
I’m going to my providers office on Monday, not to the doctor that has prescribed the meds, but someone else in the office who had an appointment available the soonest.
I’m going to bring up lowering the doses of my estradiol patch and perhaps the oral progesterone too.
Please keep me updated on how you are doing and how you respond to the lower dose.
Thanks again,

Hi, of course will keep you informed as it progresses. I am having bad cramp pains in lower abdomen at moment from the utrogestan pills. However , will keep on for a while. I think I will introduce a half pump of estriadol gel tomorrow as I want to try and get this into my body for the bones as it’s my only reason for taking it. As I am 74 it’s a huge shock to my system plus being meds sensitive . Never give up.

I hope it helps you in some way. I had a hysterectomy so only use a tiny dose of progesterone and luckily don't have to deal with any bleeding issues. Yes good to start the estrogen slowly, see how you feel. I would give the P/E at least 3 mo or more first and adjust that before adding T...otherwise it's hard to know what is doing what I found. Every time you change a thing, best to try 3mo or so to see how your body adjusts. It really is frustratingly slow. I'm much younger, so probably the overall doses you would use would be much smaller. I just learned about a supplement Resveratrol, that seems to be helpful in building bone. May try it. I've been using collagen...not done a thing for me. I think people like outselves with connective tissue problems may not process or use collagen correctly. Or maybe there is some inflammatory process that is interfering. I've got the SI joint pain thing too! The muscle and connective tissue loss from aging only compounds things. For good menopause info, I like Dr Louise Newson's videos on YouTube. There's a great podcast on apple podcasts called "Dr Streicher's Inside Information" you should check out too. Dr. Lauren Streicher is US based, but covers many topics for all ages of women.