Bone loss

[N00DLE]

I am losing bone in my mouth, I have teeth that the roots are now showing, i take Citracal (650 mg) 3 times a day. And calcium carbonate (600mg) per day. I was wondering if something else I’m not taking could cause this. Also been arguing with hematologist about another iron infusion. He says all my blood work is good, Hemoglobin 13.3, hematocrit 40.4, iron 70. When ferritin was taken a year ago it was 62. Any advise or suggestions?

I thought I would share some of my Osteoporosis journey in hopes that it may help.

My 1st question is have you had a dexiscan to get a baseline of where your bone density is throughout your body.

Also I highly recommend you see an endoconologist that specializes in bone loss other doctors are not trained to treat appropriately in my opinion.

I had my DS in October of 2012 and 5 months later was diagnosed with acute myloid leukemia so my medical history is a little different.

At 48 my leukimia treatment put me into rapid menopause and I had basically no symptoms other than the finding of severe osteoprosis shortly after.

I discovered I had osteoporosis due to a wrist fracture in a very very minor fall in soft sugar sand in Florida.

I always took a ton of vitamins diligently i
Including 4 times the amount of calcium that you're taking. My calcium and PTH were always in the normal range and yet I still got
severe osteoporosis so a dexi scan is the only
definitive way to determine where you're at.

Once diagnosed I was put on 2 years of

fortero and injectable you take every day.

I had no side effects and had great success my spine went my spine went from a negative 3 dexie to osteophemia and the to osteophenia and I actually gained back the half inch that I lost
due to micro fractures. Fortero This is the only drug that actually grows new bone you can only take new bone you can only take it for 2 years though.

My endocrinologist now wants me to take prolia to solidify the improvements that I gained and have further bone strength and I improvements however I am very concerned I am very concerned about negative side effects that I have read about.

I am in the process of making sure that my calcium is high I calcium is high enough to take prolia because it has to be yeah because it will deplete your calcium numbers.

Interesting enough my endocrinologist prescribed
hydrochlorothiazide 25mg To help with calcium absorption it did an amazing job other amazing job other benefits of this drug which is mainly just a diuretic is just a diuretic is that my blood pressure went down and it also and it also increases the size of the blood vessels in your kidney which allows for kidney stone
s to pass easier if you have this stones to pass easier if you happen to have those.

My plan is to have another dexie scan to see where I'm at and to see where I'm at and meet with my endo

to talk about my talk about my concerns about my concerns about prolia side effects. He is a big proponent of it and has had great success with the drug.

while in l treatment I also had a second wrist fracture wrist fracture my doctor says that my bones are like says that my bones are like paper mache so I must be diligent must be diligent and take care of my phone strength as much as this aint bone strength as much as possible I'm only 56 years old and very active.

That's my experience once I make it determination as to prolia I will post another as to prolia I will post an update thanks for listening hope this was helpful.

 

[nedsmehlp]

I thought I would share some of my Osteoporosis journey in hopes that it may help.

My 1st question is have you had a dexiscan to get a baseline of where your bone density is throughout your body.

Also I highly recommend you see an endoconologist that specializes in bone loss other doctors are not trained to treat appropriately in my opinion.

I had my DS in October of 2012 and 5 months later was diagnosed with acute myloid leukemia so my medical history is a little different.

At 48 my leukimia treatment put me into rapid menopause and I had basically no symptoms other than the finding of severe osteoprosis shortly after.

I discovered I had osteoporosis due to a wrist fracture in a very very minor fall in soft sugar sand in Florida.

I always took a ton of vitamins diligently i
Including 4 times the amount of calcium that you're taking. My calcium and PTH were always in the normal range and yet I still got
severe osteoporosis so a dexi scan is the only
definitive way to determine where you're at.

Once diagnosed I was put on 2 years of

fortero and injectable you take every day.

I had no side effects and had great success my spine went my spine went from a negative 3 dexie to osteophemia and the to osteophenia and I actually gained back the half inch that I lost
due to micro fractures. Fortero This is the only drug that actually grows new bone you can only take new bone you can only take it for 2 years though.

My androconologist now wants me to take prolia to solidify the improvements that I gained and have further bone strength and I improvements however I am very concerned I am very concerned about negative side effects that I have read about.

I am in the process of making sure that my calcium is high I calcium is high enough to take prolia because it has to be yeah because it will deplete your calcium numbers.

Interesting enough my endocrinologist prescribed
hydrochlorothiazide 25mg To help with calcium absorption it did an amazing job other amazing job other benefits of this drug which is mainly just a diuretic is just a diuretic is that my blood pressure went down and it also and it also increases the size of the blood vessels in your kidney which allows for kidney stone
s to pass easier if you have this stones to pass easier if you happen to have those.

My plan is to have another dexie scan to see where I'm at and to see where I'm at and meet with my endo

to talk about my talk about my concerns about my concerns about prolia side effects. He is a big proponent of it and has had great success with the drug.

while in l treatment I also had a second wrist fracture wrist fracture my doctor says that my bones are like says that my bones are like paper mache so I must be diligent must be diligent and take care of my phone strength as much as this aint bone strength as much as possible I'm only 56 years old and very active.

That's my experience once I make it determination as to prolia I will post another as to prolia I will post an update thanks for listening hope this was helpful.

Thank you for the information I will check into my dexa and an endocrinologist. I never thought of an endocrinologist. Thanks, I’m getting so much helpful information that I’m feeling more confident about what actions to take.

 

[southernlady]

Thank you for the information I will check into my dexa and an endocrinologist. I never thought of an endocrinologist. Thanks, I’m getting so much helpful information that I’m feeling more confident about what actions to take.

Where we are now (upper northern panhandle of WV and using a hospital system in the Pittsburg area) they have the AHN Osteoporosis and Fragility Fracture Clinic. They have osteoporosis specialists there. Didn’t need an endocrinologist. They also recommended a DEXA for my husband. This is one area the men recieve less than optimal care. At my age, I had no issue getting my DEXA. It was a PITA to get his. Due to his propensity to make concrete as kidney stones, he went straight to Prolia and she knows that Medicare will deny the claim but she’s gotten all her ducks in a row to fight the denial.

 

[N00DLE]

I

Where we are now (upper northern panhandle of WV and using a hospital system in the Pittsburg area) they have the AHN Osteoporosis and Fragility Fracture Clinic. They have osteoporosis specialists there. Didn’t need an endocrinologist. They also recommended a DEXA for my husband. This is one area the men recieve less than optimal care. At my age, I had no issue getting my DEXA. It was a PITA to get his. Due to his propensity to make concrete as kidney stones, he went straight to Prolia and she knows that Medicare will deny the claim but she’s gotten all her ducks in a row to fight the denial.

I wish I had access to a clinic like that, awesome. Has your hubs started Prolia yet?

 

[southernlady]

I

I wish I had access to a clinic like that, awesome. Has your hubs started Prolia yet?

Yes he has, about a week ago. It was a shot not an infusion. But he said it felt like a bee sting with the stinger still there for about an hour afterward. That sensa did go away and he’s had no other side effects.

 

[N00DLE]

Yes he has, about a week ago. It was a shot not an infusion. But he said it felt like a bee sting with the stinger still there for about an hour afterward. That sensa did go away and he’s had no other side effects.

Please keep us posted on any side effects. There is so much negative about Prolia. I'm looking for positive feedback. Thank you

 

[aaa]

I

I wish I had access to a clinic like that, awesome. Has your hubs started Prolia yet?

Many areas have similar places. For instance, I go to the Yale bone center. Maybe you could check around where you live.

 

[southernlady]

Many areas have similar places. For instance, I go to the Yale bone center. Maybe you could check around where you live.

I’ve never seen one before now.

 

[aaa]

I’ve never seen one before now.

I think it’s great you found one.

I know Manhattan has a few which I didn’t know about.

I found the Yale one by luck. In The NY Times they run a medical feature every week. Kind of a case history. In 2017, I was suffering from dreadful rib pain. No one could figure out why. The NYT story was about a bone issue. It was nothing like mine but it was solved by the Yale bone center. I figured why not? Took 4 mos to get an appt and they had a group of the doctors meet to see what everyone thought. Within 3 mos of beginning treatment it was slightly better. And it kept improving. Now at almost 4 years the pain is just about all gone.

 

[southernlady]

they had a group of the doctors meet to see what everyone thought.

Kinda like Dr. House? Sounds like they were on the right track for you.

 

[aaa]

Kinda like Dr. House? Sounds like they were on the right track for you.

Yes. My doctor said they often meet as a group when they have a condition they’re not sure of . And while my Dr. wasn’t unfamiliar with the DS she needed other opinions as to what might be going on with me.

 

[DianaCox]

Are you sure you’re losing bone in your teeth? Or are your gums receding? Dental appointment, stat!

 

[southernlady]

Update on dh’s Prolia and Medicare. Medicare approved 80% which means our Med Sup will pay the balance. Yeah, for the win.

 

[N00DLE]

Great news!

 

[JackieOnLine]

excellent!