Re: Questions about Osteo drugs-Ginger > back to Jo

[Guest guest]

Hey Jo,

here is what happened...

Hi all,

I thought I would share what happened when I was on Miacalcin for

osteoporosis. I am 5 yrs plus post-op DS and last year showed signs

of osteoporosis. So with a double whammy of family history and the

DS, my PCP and I agreed it was a good idea to try Miacalcin after

considering all the options.

She felt it was the safest of all the choices on the market when

taking into account the DS. I am not allergic to salmon, so I

agreed. I wish I would paid more attention sooner in treatment, as I

developed some major side affects from it. (Life has been so crazy,

I just thought I was over doing things)

It is now agreed by the docs (ENT specialist and PCP) that I have

an intolerance/ allergy to it. They believe this is what has been

causing my swollen glands, fibro flairs, hair loss, increased

fatigue, irregular rash, very stiff joints, increased gas, taste

changes that were just weird, extreme dry mouth, increased

sweating, weight gain, nausea, stomach ails, vision problems with

not being able to wear my contacts. They have even tested for Lupus

and Sjogren's syndrome, myositis, along with RA and other

autoimmune problems. The ENT specialist first thought for sure I

had stones in the salivary glands, but CT scan with dye only showed

inflammation and swelling. Biopsy ruled out cancer. I have been thru

the mill.. I tell you.

I wanted to share about this as the intolerance/ allergy came up

sort

of slowly as the medication built up in my system. The ENT

specialist said this is not unusual and he sees it frequently. As I

think back I think the side affects started about month 4 or 5 on

it, but I did not seek medical help until about month 8 when I

looked like a chipmunk with swollen salivary glands. So if you are

on any type of osteoporosis medication and you have weird things

starting to happen to you consider any medication that could be new

in the past year. The ENT doc said this is type of

intolerance/ allergy that builds up over time is actually very

common. So the good news is in a few months I should be back to

normal ! I have been off the Miacalcin now for about 4 weeks and I

am just starting to feel better. It has been a long road trying to

figure out why I felt like crap so badly after feeling so GOOD with

losing weight. It is said to take 14 weeks or more for the

Miacalcin to completely leave the system. So I am about 1/3 of the

way back to normal as of this post.

I hope my experience helps someone else if they develop a similar

problem on a similar medication.

Blessings,

Ginger <><

>

> > I was on Miacalcin for awhile. > Had a ton of side affects

> ==============================

>

> Ginger

>

> The potential side effects on these meds are pretty daunting.

When you

> say you were allergic to Miacalcin how was that determined? What

side

> effects did you have? Do you know your T-score?

>

> Hugs

> Jo

>

[Guest guest]

Bless you Ginger for sharing.

The side effect that you wrote about is what I've been reading. Add

to that bone cancers, dead jawbone.... I was horrified when I

started to research some of the side effects. Plus I've been reading

that although it can help you retain bone mass the bone becomes " old

bone " not new replaced bone and it can be more fragile than

the " thin " bones of Osteo. Because the " old dense bone can Shatter

instead of just break " . Some of these Osteo drugs are actually

used in Chemo at different doses.

It sounds like you were having almost all the negative side effects.

I also read that something like 70% of folks that start on the Osteo

meds stop taking them within a year because of the side effects.

I'm really, really, really leaning away from any use of them and

looking into all I can do that takes a more natural approach.

Especially exercise which can help build/retain bone and a body that

exercises is stronger and has better balance...better balance means

less falls...not falling goes a long way towards not breaking bones!

lol

Thanks Ginger your post really does help me and I'm sure it will

serve to help others.

Hugs

Jo

[Guest guest]

Jo,

I really believe the Miacalcin has caused me a ton of problems this

past year. My health was really going down the tubes and it was

scary. Now that I have been off of it for a few months, things are

improving. I have upped my calcium, magnesium and Vit D3 to increase

my bone density and added a little exercise... Need to add more.

Maybe I can ..time will tell.

Ginger <><

>

> Bless you Ginger for sharing.

>

> The side effect that you wrote about is what I've been reading.

Add

> to that bone cancers, dead jawbone.... I was horrified when I

> started to research some of the side effects. Plus I've been

reading

> that although it can help you retain bone mass the bone

becomes " old

> bone " not new replaced bone and it can be more fragile than

> the " thin " bones of Osteo. Because the " old dense bone can

Shatter

> instead of just break " . Some of these Osteo drugs are actually

> used in Chemo at different doses.

>

> It sounds like you were having almost all the negative side

effects.

> I also read that something like 70% of folks that start on the

Osteo

> meds stop taking them within a year because of the side effects.

>

> I'm really, really, really leaning away from any use of them and

> looking into all I can do that takes a more natural approach.

> Especially exercise which can help build/retain bone and a body

that

> exercises is stronger and has better balance...better balance

means

> less falls...not falling goes a long way towards not breaking

bones!

> lol

>

> Thanks Ginger your post really does help me and I'm sure it will

> serve to help others.

>

> Hugs

> Jo

>