Connect
Newly diagnosed osteoporosis and have cried every day this week
I’m 60 years old and 2 years ago, was diagnosed with osteopenia. My Dr (Gynecologist) put me on Fosamax. I lasted 3 weeks, I had severe pain in my lower right back. At first I thought it was my sciatic nerve, but when I couldn’t roll over in bed, I realized that wasn’t the issue. Dr told me to stop taking the medication, to increase my calcium to 1200 to 1400 mg a day and get some exercise. I started taking a calcium supplement with vitamin D, increased my calcium, but didn’t increase my exercise enough, obviously.
When he called with my results I told him I had already read them and I have been crying all weekend. He asked why I was crying. I said because I feel like my fate has been handed to me, that I’m going to break a bone not heal, and I’m going to die. His response was oh. My mother died at the age of 84 from a broken hip and when I read those results, I had a flashback to her dying alone at night in a nursing home and that would be soon be me. He proceeded to talk to me about two different medications; Evista and Prolia. I had already joined the support group and have been reading many discussions on types of medication‘s. He never once mentioned that Prolia would be a lifelong commitment. He just gave me a brief overview of both of them, and asked me which one I wanted to start taking I told him I wanted to see an endocrinologist. He seem to be kind of offended. I don’t care. I was kind of offended at his lack of empathy and lack of knowledge on those 2 meds. I would love to be able to get my numbers back to at least osteopenia range without medication but I don’t think that’s realistic. The side effects of the meds also scare the heck out of me. I have called two different endocrinologist to make appointments, but waiting for doctor office to send the referrals. I want to have options.
A month ago I started taking a yoga class two times a week and also a Kettlebell class one day a week. I also received a weighted vest at Christmas and just started wearing it this week and use it during my breaks at work. Too bad I didn’t do this two years ago.
I don’t understand my results other than they’re bad. My T score of L1: -2.7, L2: -3.3, L3: -2.9, L4: -2.3, L1-L4: -2.7 I don’t understand the total number and it says look at the lowest score which is -3.3 so I guess I have severe osteoporosis it’s all so confusing. I just can’t get out of my head that life as I know is over. Sorry this was so long, have no one to talk to about this.
Like
Helpful
HugInterested in more discussions like this? Go to the Osteoporosis & Bone Health Support Group.
Connect
It can be upsetting to get this diagnosis especially when your mom died after a hip fracture. My dad had osteoporosis and was quite frail by the time he passed at 75.
I am 64 and have had osteopenia/osteoporosis for 12 years. I started out by incorporating lifestyle changes: lifting weights, calcium/magnesium and K supplements, and healthy diet. I was already on bHRT when I was diagnosed so I have continued that throughout.
After four years, my DEXA scores indicated I was in osteoporosis. My PCP started me on Fosamax, which I took for over five years. I had no side effects with the medication but while it improved my bone density for the first two years I was on it, unfortunately I lost bone density after that.
I thought nothing of having osteoporosis and my life didn't change until I had a vertebral fracture, even though my spine density was never that low. This is when I really started researching the condition and the medications.
I finally saw a specialist and have tried three different medications (Tymlos, generic Forteo, and Evenity). I will have a follow up DEXA this summer which will show whether any of these have worked for me.
I've continued with all the lifestyle measures I'd done for years. The good news is that I haven't had another fracture after 2.5 years and I feel healthy and strong.
Recently, I found out that I have idiopathic hypercalciuria which means I excrete a lot of calcium in my urine. This condition runs in families and I suspect it might have been what caused my dad's osteoporosis.
You are doing the right thing in consulting an endocrinologist to examine potential causes of your osteoporosis. Good luck, I hope you will start feeling better about your diagnosis soon.
-
Like -
Helpful -
Hug
5 Reactions@rudysmom
TBS is a bone quality score based on your dexa bone score. REMS also can give you a bone quality score.
You said in the post "My mother died at the age of 84 from a broken hip and when I read those results, I had a flashback to her dying alone at night in a nursing home and that would be soon be me. " I assumed osteoporosis, but obviously it could just be a bad fall.
There is no reason to be depressed about this. You have found a potential problem and it can be addressed. You just need to do some research, talk with your doctor and decide what works best for you. As many have said they would gladly have your scores plus no fractures what great news.
The femoral area does take the longest to change, just the nature of the bone. So the sooner you decide what intervention you wish to use the better. But this is just a research and planning problem not a "crying all weekend" problem.
Please feel empowered, do your research. You can change this situation for the better and there is no reason that you can't live a long and active life.
-
Like -
Helpful -
Hug
7 ReactionsI am so sorry, I suffer so much from this disease due to not knowing I had celiac disease for 49 years.
Regardless of that dont give up the fight, I recently got such good support from this group. Im have horrific Prolia withdrawal to then go on Tymos and I could scream the way I feel but I won't. I fight, I study. I learn. Im praying for you. Some of the drugs are really helpful its just a hard disease to deal with.
-
Like -
Helpful -
Hug
5 ReactionsI felt the same way when I was diagnosed. I toldy Dr I wanted to try weight/ resistance exercises before starting any meds. I found Brick house bones, a Facebook group. Dr. Lisa Moore also has you tube videos with exercise. Also she discusses dexa test, interviewed many people that help with OP. SHE REALLY helped me. I am now going to the gym lifting weight, impact training, 3 days a week. I walk 3.5 miles 4 days a week. I also started HRT 1 year ago. I hope this will stabilize if not improve my OP.
-
Like -
Helpful -
Hug
5 Reactions@beanieone I just read your puss and it was excellent!!!! My name is Jim I am 57 years old. My rheumatologist did a bunch of testing on me to try and find out the underlying condition that contributed to me have osteoporosis. She did a few different tests 1 being a 24 hour urinalysis test. My test came back abnormal. I went in to discuss this with her and she said that I have idiopathic hypercalcymia, that this has been going on for a very long time. She said I was urinating my calcium out everytime I want to the bathroom. She put me on hydrochlorothiazide 25 mg to help redirect the calcium to my bones. She feels strongly that by correcting this underlying condition I had and doing reclast infusions, I just did my first reclast infusion on 2/12, that she feels strongly that my next dexa-scan we will see big improvements in bone density.. curios on your thoughts to this.. thank you!
-
Like -
Helpful -
Hug
7 Reactions*post
@oopsiedaisy I just read your post. We have a few similarities.0nd being our underlying condition,I found out that I have idiopathic hypercalciuria which means I excrete a lot of calcium in my urine. this is exactly what I was told I have. My rheumatologist put me on 25 mg of hydrochloroiziade to help redirect the calcium to my bones. I just had my first recast infusion on 2/12. Are you taking the same medication for idiopathic hypercalciuria??my rheumatologist had said that by fonding this out and correcting it that it will help a lot... have you been told that also???curious to hear your views on this.. thank you!!
-
Like -
Helpful -
Hug
1 Reaction@jimmy05 I see my endocrinologist on the 26th to discuss treatment. I suspect she’ll start me on a thiazide. In the meantime, I’ve been reading about it and lifestyle changes I can make including drinking more water, reducing sodium and animal protein in my diet. I’ve cut back on the whey protein supplements I was taking. I’ve been into the “more protein is good for building muscle” camp for years and have learned that too much animal protein can make hypercalciuria worse.
This could explain a lot for me with regards to my osteoporosis. I’m hoping this might help. In doing a site search here I did see a person who said that the treatment didn’t help with his IH so I will remain cautiously optimistic and keep expectations moderate.
Have you had any issues with the hydrochlorothiazide?
-
Like -
Helpful -
Hug
1 Reaction@jimmy05,
You made my day! Our docs just might be onto something here! My 24-hour urinalysis showed a high concentration of calcium. My doc prescribed chlorthalidone in a low dose and, instead of Prolia, I will have another Reclast infusion in July; I’ve had quite a few already.
I had my last DEXA in January, so it’ll be two years before I get those numbers, however, my other interim bloodwork may tell the tale. I’m guessing I’ll have another 24-hour test to see if the meds are working. I love that your doc said that you will see big improvements in bone density on your next DEXA. My fingers are crossed hard for me, and now you, that this might be the answer.
Thank you for posting Jim. Keep posting to let me and everyone else know how you’re doing. Glad you posted. All the best!
Cheers!
-
Like -
Helpful -
Hug
3 Reactions@kathleen1314 I would again recommend that before starting strontium people discuss with their DOCTOR and pharmacist. It DOES have contraindications for some people.
-
Like -
Helpful -
Hug
3 Reactions