Hello, I am a 44 yr old male and was diagnosed with osteoporosis in 2014 on a severe level, my T score for the lumbar was -4.0 Femoral neck was -2.9 and my hip was -2.7, I was taking alendronate sodium for 2 years with very little results and I was recently diagnosed with Barrets Esophagus so I cant take Alendronate no more, they switched me to injectable forteo which Im waiting for insurance to approve because the cost is outrageous.. I have had a total of 4 compression fractures in 2 yrs the T9, T4, T3 and T5, I feel so miserable and depressed its unbelievablt to have these problems at my age, I am working but I am in pain everyday and I worry about my family and their stress, sometimes I feel as though it would be easier to end myself and my family would have the survival benefits to manage better, I feel as though my issues are a hindrance, can anyone please give me any insight on any causes that could give this to me, my Endroconologist is testing now for multiple myeloma and it really scares me.
Hi Paul, I am very sorry about the ordeal that you are going through. Your endo doctor sounds conscientious in that he is trying to find the reason behind your osteoporosis, as you are young to have it. Hopefully it will not be a worst-case scenario. Because this isn't a medical site but rather a support site, any input that I or others might offer about a diagnosis would be highly speculative.
I am sure your family would be devastated if you were to end your life; the survival benefits would be no consolation. Is there someone outside of the family whom you can confide in, such as a close friend, a counselor, or a pastor?
I hope you will keep posting to let us know what is happening and receive support.
All best,
Allison
Hi Paul. That all sounds pretty grim for you. I have been unwell since christmas and each time they do a scan or blood test they found something else. Now told them not to do anymore! Just been told all clear, thank goodness. However I do have 12/13 vertebral fractures. Coming up to three months with latest one (lower lumbar). Anyway, has been hell. However you don't know you have anything horrible do you. Ones oesophagus does get very temperamental but hopefully you on medication. Try to concentrate on what you can do not what you can't. It's really hard to begin with but once you accept the situation life does become easier. Your family without doubt would not be better off without you but I understand the feeling. Read up on your conditions and empower yourself, try some alternative stuff (I have Bowen and see a whacky chiropractor), I go to the gym too. Acceptance is the key really. Come on here whenever you need to. Be strong, things do get better, I promise you, take care. P.S. Alendronate made me really poorly. Injections were ok, just finished my 3 years, Good luck
Paul, you will get heaps of support on here. Please know that people on here can relate to your situation and will help you through this.
I am thinking some help with relaxation exercises would be good. Perhaps see someone who can teach you some skills for dealing with the stress of this.
My t scores are similar to yours and some are even higher.
Some of us are taking supplements to help as well. Zinc, magnesium, vitamin K2, vitamin D3 as well as calcium if not getting enough in the diet. Foods that may help include prunes, avocados, kiwi fruit, apples and vegetables like leafy greens.
Please come on here every day until you feel you are not stressing and we will look for you to know you are okay.
All the best.
The advice to make sure you are getting all the nourishment you need for your body to make new bone is important. There are a few other strategies which may have fewer side effects than any of the heavy duty OP meds (which in the long run, unfortunately, compromise your bone strength and should probably never have been prescribed for anyone as young as you are). One is strontium citrate (not ranelate, the pharmaceutical manufactured version more expensive and has side effects) which increases bone density although I don't know if it actually improves bone strength. I've also seen something about where a substance is injected into fractured vertebrae to replace the bone. This may be in trial only, and probaby not appropriate for everyone. Because it replaces bone it also completely stops any opportunity for the body to fill in the spaces naturally. But it might be worth asking about.
Paul,
I also wanted to encourage you. For one, ending your life would only give your family life-long pain to deal with. Please don't let that thought go anywhere except away. You are valuable and needed here. I was 30 when I was diagnosed with severe OP. i was in constant pain, and had 3 young children... one only 3 months old. I am now 54, and live most of my days pain-free. Of course, I have my limits, but all of that to say that you will "figure it out".
Please hang in there, and know there is a future for you.
Morning Paul, Firstly i just want to send you big hugs as I can just hear the despare in your mail. It is my mum that has osteporosis so as a close family member to someone in the same boat as you, and I have to say I love my mum so much and to hear you say that you were thinking of ending yourself to releive their stress, so sad. I know that your family loves you so very much and would want you to talk to them if you are feeling like this. Communication is the key. They are worrying what you are thinking and you are worrying what they are thinking. Now my mum has 4 spinal fractures and 9 rib fractures at present and like you, she is still working and in immense pain. She has now been prescribed morphine. This just takes the edge off the pain so perhaps you could talk to someone about your pain management? Also my mum was prescribed Aledronic. I had done so much research on it that i really did not want her to take. I never told her of the side effects, i wanted to hear how she felt after taking it. Within 2 weeks the pain she was in all over her body was far less than if she was not taking it. i immediately took her off and made an appoinment with doctor. I insisted they refer mum to a rheumatologist. Mum has never had a dexa scan so i could never get my head around why they prescribed AA. Anyway the rheumy was a lovely lady who immediately had compassion for my mum. Now this is what I want you to take note of... Mum was prescribed Strontium Renalate. I am not sure where you are in the world but here in the uk this is rearely prescribed because it is very expensive. £300 versus the £50 for AA. We were told this is why the doctors will only prescribe AA because it is cheaper. The strontium is a diffferent family of drugs that have little or no side effects. They build new bone not just harden the damage bone that is there. Anyway with 2 weeks of mum taking this she is already feeling lots better. She says she can feel that he fractures are actually healing. I asked the rheumy if this was it for my mum, would she be in pain for the rest of her life and she said abosloutley not. This stronium is amazing medicine. Her words not mine. Get back to your doctor and ask if you can be given this to try. I would do anything for my mum as I am sure your family would do for you. I wish you all the best Paul and as everyone has already said on here, when thinks seem like they are getting you down, log on and share your feelings. There will always be someone here listening. Please let me know how you get on at doctors and dont you stop fighting them. This is your body, your life. xx
That particular drug is only prescribed for post menopausal women with no heart conditions.
I would be wary of that as my mum and grandma both had heart problems.
There may be something else though and seeing a specialist is a great idea. My GP is leaning towards that.
Well it turns out that my Endroconologist contacted me this morning to advise me that I have very high prolactin levels which is produced by the pituitary gland, it also causes low testosterone, this may be the culprit for osteoporosis, she is leaning towards a tumor on the pituitary gland causing the high levels of prolactin so she is sending me for a brain MRI, I really want to thank those for their words of encouragement and support during these stressful times.
Why not strontium citrate - a lot cheaper and apparently it works to increase bone density. Of course it is a naturally occurring form so the drug companies can't make as much money out of it.
I've asked my endocrinologist about strontium in the past. He says he discourages its use because it is a heavy metal and thus distorts the DEXA scan readings. I take that to mean that one would never know if the strontium was helping or not.
That's great news, Paul, because I believe that pituitary problems are usually treatable. That diagnosis had crossed my mind earlier, but I assumed your endo dr. would have ruled it out before posing the possibility of multiple myeloma. (Sounds as though he failed to do so.)
See, there is hope. You are very young for osteoporosis so an alternative cause is quite feasible. Hang on in there. I have been on all the drugs for it and sometimes feel too much is made of it all. Some worked well, some upset me but I am here, have fab children and a wonderful grandchild (plus hubbie of course), so have to be grateful. It will be alright, you will see, be positive. Let us know how you get on.
I think that is BRILLIANT! So encouraging to hear that a doctor is questioning its use. What I've read is that strontium increases bone density - because it is replacing calcium. Seems questionable at best. I was merely suggesting citrate as a less expensive and possibly less toxic alternative to the patented ranelate.
If you are in the U.K., as most posters on this site seem to be, my endo dr said it wasn't approved for use in the U.S., which is where I am. Maybe there's a different view about it in U.K.?
I know that strontium ranelate hasn't been approved everywhere but don't know the details. I'm in Canada. Was offered AA by my doctor when I started on prednisone. No other medication ever suggested.
Paul,
That is such wonderful news!!!!!!!!! For me, they never found a cause.... Except that maybe my bones just never peaked. I'm thrilled that maybe they are already on a path of solution for you!!!!
Hi Paul, I can completely relate to you're post, as a 37 year old male also with severe OP diagnosed recently enduring test after test which is although gruelling a positive step.
I too have had a hard time with stress and anxiety which was bottled up but you need to talk, us males go into our cave and silently worry.......please don't worry, seek out every ounce of support you can and turn the confusion into fighting spirit, be determined to conquer this terrible time, it's a lonely condition as not many our age face this but we can all help and face together
Hi, i ve recently been diagnosed with really low dexa scan scores and been prescribed alendronic acid.. was worried about taking it because of the side effects I've heard of & possible extra pain and wondered for those who've taken a.acid does it improve symptoms and does the previous post mean extra pain all over 2 weeks later/or less pain, I'm only early 40s and worried it's too strong for me as I'm not very heavy, I think similar to you Jill not sure of cause but I've maybe just never had very strong bones & got to that 'level' that they should be. I just want to be stronger and have this at a normal level !
I have never taken aa and no intention of doing so. I was wondering, however, why you are taking a bisphosphonate at such a young age as it can only be relatively safely taken for two years; maximum, which I think is chancy, five?