Forteo

[Guest guest]

My family doctor put me on Forteo 2 months before my surgery to strengthen my

bones. It is given by injections. Once daily. My husband said " No way, I ain't

giving you shots! " After the third one, he was a pro. My insurance (BCBS) did

cover it. I did not continue it after surgery because in that little pamphlet

that come in the box that you have to read with a magnifying glass said it

causes cancer in rats. That was enough to discourage me.

Joyce E

Re: RE: Calcium supplements/bone density

Hi Carole:

I just thought I'd pass along a couple of tidbits on the whole calcium &

bone density subject. A couple of months ago, Consumer Reports rated calcium

supplements and one of the " best buys " is the Kirkland brand (sold by Costco)

that has both calcium & Vitamin D in it. I guess that they had a lab analyze

the contents of the major brands calcium supplements, test their absorbability

and believe it or not check for any lead levels in them. Anyway, I'll have to

look back at the issue and see if they rated the Viactiv supplements.

Also, Dr. Bridwell had told me that my bones were quite osteoporotic in

my spine (my dexa still shows me at the " osteopenia " stage), and he and I were

talking about prescription drugs for increasing my bone density. Interestingly,

he said that since I just had my revision surgery, I would not be able to take

the Fosamax, because it inhibits osteoclast formation, which is necessary for a

solid fusion to occur. So, until I have a solid fusion (hopefully), I cannot

take the Fosamax. He is a big advocate of a fairly new drug for increasing bone

density called Forteo, which does not inhibit the osteoclast formation. He

would like me to start taking it in the next few months if possible, however

many insurance companies are not yet covering it (I believe they're waiting a

period of time since it is so new). To pay for it out of pocket is approx.

$1000./month. So, when I see him at my next check up, we''ll! see if it will be

covered. He said that according to research studies

that have been done examining the osteoclast formation, this would be a

favorable drug for me to go on, considering I'm 4 mos. post-fusion.

Anyway, just thought I'd pass this info. along. It sounds like what they are

now finding out about Fosamax is that it may not be a good choice post-fusion

surgery.

Martha

txbluebelle <txbluebelle@...> wrote:

Oh Carole,

No WONDER your neck has been hurting! Bless your heart! I hope the

chocolate calcium and Fosomax help. I think we ALL need an extreme

makeover! I just don't want to have to go through what you have to

go through to be fixed! I think we all need new spines that don't

break or curve wrong. You are too YOUNG to be this old! I feel the

same way about myself. :-(

At least it sounds like you have a caring doctor. Hang in there okay?

I really need your encouraging words.

Txbluebelle

> Oh, what a wonderful letter from bahadreams! I am older and still

in pain

> and have been through many, many of the treatments mentioned in

the letter.

> You give me such hope -- and I am so sure that you give many other

people such

> hope, as well!

>

> I still manage to get many things done; however, my husband has

taken over a

> lot of the household chores now that he is retired.

>

> Our latest " blow " came last night when we learned the results of my

bone

> density test. Perhaps the results are good and bad. I've been

having real

> trouble with my neck (left side). The test showed that I have

fractures there!

> My doctor was very sweet in the way he explained it to me (and

called at

> least four times to reach me). We will be starting some fairly

aggressive

> treatment to get all of this under control. Of course, Fosomax

will be a part of

> it, as will the chocolate calcium, and about three other things

which, right

> now, I cannot even remember. I do know that I've walked around in

a muddy

> cloud all day, wondering what else could happen. Now that I've

digested the

> results I am feeling a bit better, but still feel ostracized for

one reason or

> another. I do not know why that!

>

> I am so very happy that people are finding ways to cope! I

certainly am not

> the only one in my situation and I promise that I will not feel

sorry for

> myself beyond tomorrow.

>

> I think maybe it's the " getting old " part of things that is so

scary.

>

> Anyway, I am thrilled that people are finding ways to shop, to

alter clothes

> to make them " smart " , etc. That is one of my biggest problems!

>

> So, Bahadreams, you keep on truckin'! I'll be watching! And

thank you for

> a real LIFT today!

>

> Sincerely,

>

> Carole M. (the elder)

>

>

>

[Guest guest]

I don't have SMA but I have another form of muscular dystrophy. I was diagosed

with pretty severe osteoporosis in 2006. Because I have some swallowing

difficulties my doctor and I decided that I should go on forteo. I could have

done IV boniva four times a year but my insurance wouldn't cover it. Forteo is

not really recommended for pre-menopausal women, and it does carry a black box

warning for bone cancer. But my doc and I decided the very small risk definitely

outweighed the possible benefit.

 

I was concerned about giving myself shots because I am a big weenie. But the

needles are very tiny, and I did just fine from an emotional standpoint.

Physically it was a bit difficult to push down to release the medicine. I could

not do the shots in my stomach because of that, but I was able to give myself

the shots in my upper leg. Unfortunately some days I had to stick myself twice

because I thought I held the lever down long enough, but I didn't.

 

At least when I was taking the shots, Forteo was only approved for a two year

cycle. I am a big procrastinator and a terrible medicine taker, but I did not

miss a day on the forteo. I didn't have any side effects. I have been off the

shots for about three years now. I still have osteoporosis, but my yearly scans

continue to show slight improvement in overall bone density. I am now actually

in osteopenia in my arms, which is amazing because my arms are very thin. I

drink milk nearly every day but I have not been good about taking extra calcium.

So I don't know if the continued improvement is still from the forteo, from the

milk, from good fortune, or some other source. I have no idea if my results are

typical. What I will say is that in my opinion, the forteo is a good option,

especially if you have any swallowing problems. The situation with osteoporosis

meds is that you have to be able to swallow them quickly, drink a glass of

water, and stay upright

after for at least 30 minutes. I believe some of the meds do come in liquid,

but I actually have more problems with liquids than I do solids.

 

The shots should come with an insulated pouch because you have to keep the

medicine cold. Its not as hard to do that as I thought it would be. I did have

to arrange for a refrigerator in my hotel room when I went on a trip for work,

but since it was for a medical reason the hotel did not charge me extra.  

 

Because I'm only 42 (nearly 43) it was a bit of a gamble that I went on forteo

so early. I'm not sure what's going to happen when I do become menopausal. I

will likely have to go on something else, but I don't know what. I can't go on

forteo again, and I know my swallowing issues are not going to improve. So I'll

cross that bridge when I get to it. Hopefully there will be more options in the

coming years.

 

Dina

From: su_ma_la <suzanne.laprise@...>

Subject: Forteo

Date: Tuesday, February 22, 2011, 11:54 AM

 

I found one post regarding the use of Forteo but I was wondering if there was

anyone else that would be willing to share their experiences and advice as to

whether this is an appropriate drug for bone loss in sma.

Thanks

Suzanne