Osteoporosis

[Guest guest]

Hi Geri

Thank you for the good advice. I know that i will probably have to use

the hormone patches once again, and start taking imuran. I think i was

just kidding myself that the osteoporosis and long term prednisolone

side effects would disappear. Headaches are the much better option than

osteoporosis. I see my Gastroenterologist tomorrow. I'm due for a liver

biopsy too. I will see what he says.

Yes i would love to get rid of the swollen abdomen and live happily

with as little medication as possible. Good luck with your Prednisone

withdrawal. Sounds as if there is hope this time.

Have a good day

God bless

_________________________________________________________

[Guest guest]

Hi ,

I saw a new Rheumatologist today. (Previously we were driving 5 1/2 hours

each way to see doctors in California.) He ordered a bone density test for

me since I haven't had one since March of 1998, and if you've been taking

Prednisone, you should have one at least every 13 months, according to the

doctors I've talked to. He also wrote me a one year prescription for a

hormone patch as an osteoporosis preventative. He commented that he

doesn't " do pap smears " . Good, because I wasn't about to have one anyhow.

I bit my tongue to keep from mumbling, " yeah, yeah, well I've had a

hysterectomy and I'm not sure I have a pap to smear " but I behaved myself

and said nothing.

We did have an interesting discussion about Prednisone. I should point out

to those who might not have thought about it: A Rheumatologist is far more

likely than a Gastroenterologist to have prescribed Prednisone, since they

treat a number of diseases that require corticosteroid treatment, such as

Lupus and Rheumatoid Arthritis. From my experience, they seem to be much

better educated in the ramifications of long term, high dosage

corticosteroid therapy.

Anyhow, I told him that I'm down to 5 mgs. of pred daily and reducing at a

rate of 1 mg. every two weeks. He said that it's unlikely that I'll ever

be able to completely stop taking it, though I can try if I must. (My

Hepatologist wants me to try to stop.) He said that he would recommend

daily doses of 5 to 7.5 mgs., from now on. But, if I really have to try to

get off the stuff, he told me to only reduce it at a rate of 1 mg. every 3

to 4 MONTHS! This allows the body's adrenal system to " wake up " , he says.

That could take up to a year to happen.

I asked him if I would ever lose weight if I simply continue to take 5 to

7.5 mgs. daily and he said, " there are some things that are far worse than

being overweight. " I knew that, but I guess I had to hear it. It makes me

wonder why I'm staggering around with all this leg pain, fatigue and other

problems when all I probably have to do is raise my dose back up to 7.5

mgs. Anyhow, my husband says that I'm " cuddly " with this increased weight.

Now, to make him hold onto that thought.

Are you going to have to have another biopsy? Hope not for your sake, but

if that's what they have to do to chart your condition, well......

Take care,

Geri

[Guest guest]

Hi Geri

Good luck with your Endoscopy, i have not had the procedure so i can

not give any advice, but from what other members have said it sounds a

piece of cake.

I visited my GP last week, he did his damndest to get me to take

hormones for the osteoporosis. He even gave me a free sample of hormone

gel, which works the same as the patch, but gives one more control of

the dose. I refused to take the hormones as migraine is the main side

effect, and mine have just dissipated after many years of suffering. As

for taking Fosamax for my osteoporosis, because mine is borderline he

said he will give me a year of experimenting with Calcium Vitamin D and

Exersize. I hope this works for me as migraine and the side effects of

Fosamax isn't going to give me quality of life, but neither is

osteoporosis.

Have a Good Day

AIH

[Guest guest]

Hi ,

I have to tell you that if you are still borderline osteoporosis

(osteopenia), you have an excellent chance of building up your bone. I would

encourage you to do some research about the other elements necessary for

effective bone building....primarily magnesium and phosphorus. There is a

website...foodandlife.com. The woman who has this website has written 4

books and added 5% to her bone mass without hormones or drugs and she was in

her 70's at the time.

[Guest guest]

, I was a migrane sufferer. They went away

about 6 yrs ago..I started hormone replacement since

then and it had no effect on the migranes..Just

thought I'd share that with ya. Now, Ive stopped

using the oral hormones because I have read that they

are metabolized thru the liver and didnt want to tax

the poor liver anymore than it already is. The cream

seems to be a lot more subtle on the system than the

oral.

Just thought I'd pass on this info

Jody

===

ISO B-family

DOB 5-23-61

b-name: Compton

*VOTE TO RE-ESTABLISH ADOPTEES RIGHTS TO KNOW THEIR

FAMILIES**

---=?iso-8859-1?q?brenda=20maguire?=

<bmag21@...> wrote:

>

> From: =?iso-8859-1?q?brenda=20maguire?=

<bmag21@...>

>

> Hi Geri

>

> Good luck with your Endoscopy, i have not had the

procedure so i can

> not give any advice, but from what other members

have said it sounds a

> piece of cake.

>

> I visited my GP last week, he did his damndest to

get me to take

> hormones for the osteoporosis. He even gave me a

free sample of hormone

> gel, which works the same as the patch, but gives

one more control of

> the dose. I refused to take the hormones as

migraine is the main side

> effect, and mine have just dissipated after many

years of suffering. As

> for taking Fosamax for my osteoporosis, because

mine is borderline he

> said he will give me a year of experimenting with

Calcium Vitamin D and

> Exersize. I hope this works for me as migraine and

the side effects of

> Fosamax isn't going to give me quality of life, but

neither is

> osteoporosis.

>

> Have a Good Day

> AIH

>

>

>

>

> ---------------------------

[Guest guest]

, I was a migrane sufferer. They went away

about 6 yrs ago..I started hormone replacement since

then and it had no effect on the migranes..Just

thought I'd share that with ya. Now, Ive stopped

using the oral hormones because I have read that they

are metabolized thru the liver and didnt want to tax

the poor liver anymore than it already is. The cream

seems to be a lot more subtle on the system than the

oral.

Just thought I'd pass on this info

Jody

===

ISO B-family

DOB 5-23-61

b-name: Compton

*VOTE TO RE-ESTABLISH ADOPTEES RIGHTS TO KNOW THEIR

FAMILIES**

---=?iso-8859-1?q?brenda=20maguire?=

<bmag21@...> wrote:

>

> From: =?iso-8859-1?q?brenda=20maguire?=

<bmag21@...>

>

> Hi Geri

>

> Good luck with your Endoscopy, i have not had the

procedure so i can

> not give any advice, but from what other members

have said it sounds a

> piece of cake.

>

> I visited my GP last week, he did his damndest to

get me to take

> hormones for the osteoporosis. He even gave me a

free sample of hormone

> gel, which works the same as the patch, but gives

one more control of

> the dose. I refused to take the hormones as

migraine is the main side

> effect, and mine have just dissipated after many

years of suffering. As

> for taking Fosamax for my osteoporosis, because

mine is borderline he

> said he will give me a year of experimenting with

Calcium Vitamin D and

> Exersize. I hope this works for me as migraine and

the side effects of

> Fosamax isn't going to give me quality of life, but

neither is

> osteoporosis.

>

> Have a Good Day

> AIH

>

>

>

>

> ---------------------------

[Guest guest]

Hi Amy

I read your recent report of having x-rays, and overhearing the tech

discussing the results.

I was in the same situation, insofar as after they had completed the x-rays,

they brought me back for more? I asked the tech if they had found something,

only to be told, " No the first X-rays did not come out too clear! "

From the way they positioned me on the couch, and then rotated me in several

NEW directions, I realised they were not telling me the truth. Waiting was

for me the hardest, suspecting something was amiss, then having to return

for the results. However once I had the results, thankfully it was not as

bad as I had imagined.

One thing I do know, the techs can spot problems, but it takes a qualified

person to really understand just how severe those problems are.

Love and God Bless

Gillian

Re: [ ] Osteoporosis

>From: AmyDeel@...

>

>Aprle,

>

>I went to Stanford this week and they did x-rays on me suspecting a similar

>sounding disease to your's, but it started with an " A " . My husband was mad

>because he couldn't believe that I didn't write it down. Anyway, when they

>were taking l-rays of my hands, one tech said to another, " Are my hands

done

>yet? " Speaking of mine, and the gal said, " The ones with arthritis? " My

>tech said, " Yeah " , and I left feeling so depressed. I realized if it was

>that obvious, it must not be good. I wonder how my hip and other x-rays,

>came out. I guess I'll have to wait until next month when I go back. I'm

35

>now, but like you, I really don't feel my age.

>

>Amy

>

>>Please visit our new web page at:

>http://www.wpunj.edu/icip/pa

>

[Guest guest]

- from what I understand about osteoporosis, women are pretty well

protected from it until they reach menopause. Since you are 36, you probably

are in no immediate danger of it, but maybe discussing it with your gyn would

be a good idea. I think different things effect it, heredity, hormones, etc.

[Guest guest]

Someone -- I don't remember who -- asked if taking a "bone loss" drug with food was really a problem. I've been looking for a reference I read when I first began using an alendronate (Fosamax.) The study I'm trying to find showed, the best I remember, that the value of the drug was very, very greatly reduced if taken with anything but plain, unflavored water. Osteoporosis is not a minor problem at all. You should make every effort to take the pill as prescribed (which is probably with plain water, on an empty stomach, sitting up or standing.) As I recall, even sparkling water greatly reduced the effectiveness of the alendronate. I'm sorry I haven't been able to locate that study for you.

[Guest guest]

In a message dated 2/11/02 3:51:22 PM Pacific Standard Time, rthornton@... writes:

Thanks Harper. Great information. My weight-bearing excercise is even more important now, of course. I assume the benefits as far as [weight lifting] preventing, and even reversing, osteoporosis carry over to us as well...and is of increased importance. I think I may still need a bit of calcium, though. I am generally opposed to herbal supplements, and many excess vitamins can be dangerous too, so I am super cautious now. I will talk to my doc about the specifics!

Thanks again.

Yes! Weight-bearing exercise! Important in fighting bone-loss!

Harper

[Guest guest]

thanks for the info - i didnt know either. this might be a very stupid

question to ask but is it just synthroid or all thyroid meds? thanks

>From: " mspac99 " <mspac99@...>

>Reply-hypothyroidism

>hypothyroidism

>Subject: Osteoporosis

>Date: Sun, 09 Jun 2002 17:55:08 -0000

>

>I have been taking synthroid for about 15 years, maybe longer. I

>have been reading that synthroid can contribute to osteoporosis and

>asked my doctor about it. She said she never heard about it!!! and

>that taking synthroid is just like having your own body make it. (

>not true) Nevertheless, I worried and took it upon myself to have a

>bone density test and I DO have osteoporosis. So ladies, if you are

>past menopause, get yourself up and get the bone density test before

>it is too late. I wish someone would have told me a long time ago.

>

>

_________________________________________________________________

Join the world’s largest e-mail service with MSN Hotmail.

http://www.hotmail.com

[Guest guest]

Fortunately, this is not true. Synthroid and other thyroid

medications do not put women at any additional risk for osteoporosis.

See http://thyroid.about.com/library/weekly/aa061100a.htm for the

details and if you are menopausal please DO get a bone density test.

There are a lot of causes for osteoporosis whether you are taking

thyroid hormone or not.

Best wishes,

Celeste

Some anonymous person wrote:

> I have been taking synthroid for about 15 years, maybe longer. I

> have been reading that synthroid can contribute to osteoporosis and

> asked my doctor about it. She said she never heard about it!!!

and

> that taking synthroid is just like having your own body make it. (

> not true) Nevertheless, I worried and took it upon myself to have

a

> bone density test and I DO have osteoporosis. So ladies, if you

are

> past menopause, get yourself up and get the bone density test

before

> it is too late. I wish someone would have told me a long time ago.

[Guest guest]

" Super-potent levothryroxine can cause angina, tachycardia or arrhythmias

and contribute to osteoporosis. " -

http://www.williamsbailey.com/services-synthroid.htm

" But increasingly, doctors are getting better not just at diagnosing these

problems, but also at avoiding what used to be a major pitfall:

Overtreating hypothyroidism, which can cause osteoporosis, or bone loss. " -

http://www.boston.com/globe/search/stories/health/health_sense/061096.htm

" Some people are at greater risk of osteoporosis and breaking a bone than

others. You are at greater risk if someone in your family had osteoporosis

or a Dowager's Hump. Other risk factors include cigarette smoking, a low

calcium diet, premature menopause, inactivity, being fair-haired and

fair-skinned, a slender build, alcohol abuse and some medications such as

Synthroid, prednisone, and seizure medications. " -

http://www.always.com/straight_talk/menopause/c4cContent.html

" Although thyroid abnormalities can be associated with bone loss, this is

not necessarily the case with you. " -

http://www.obgyn.net/osteo/osteo.asp?page=/osteo/ate_0301

Kat.

At 01:59 PM 6/10/2002, Celeste wrote:

>Fortunately, this is not true. Synthroid and other thyroid

>medications do not put women at any additional risk for osteoporosis.

[Guest guest]

Hope,

Actually, it's not true for any thyroid meds. See

http://thyroid.about.com/library/weekly/aa061100a.htm or

http://www.focusonosteoporosis.com/script/main/art.asp?

articlekey=16056 & rd=1 or http://thyroid.about.com/cs/osteoporosis/

for more information. Hyperthyroidism itself produces an increase in

bone loss, though, so please keep this in mind as you approach

menopause.

Best wishes,

Celeste

Hope Owen wrote:

> thanks for the info - i didnt know either. this might be a very

stupid

> question to ask but is it just synthroid or all thyroid meds?

[Guest guest]

Kat,

Fortunately, recent studies have refuted this old information. Be

careful, though, because there is still a lot of this old information

around and it is misleading.

Best wishes,

Celeste

Katrina wrote:

> " Super-potent levothryroxine can cause angina, tachycardia or

arrhythmias

> and contribute to osteoporosis. " -

> http://www.williamsbailey.com/services-synthroid.htm

>

> " But increasingly, doctors are getting better not just at

diagnosing these

> problems, but also at avoiding what used to be a major pitfall:

> Overtreating hypothyroidism, which can cause osteoporosis, or bone

loss. " -

>

http://www.boston.com/globe/search/stories/health/health_sense/061096.

htm

>

> " Some people are at greater risk of osteoporosis and breaking a

bone than

> others. You are at greater risk if someone in your family had

osteoporosis

> or a Dowager's Hump. Other risk factors include cigarette smoking,

a low

> calcium diet, premature menopause, inactivity, being fair-haired

and

> fair-skinned, a slender build, alcohol abuse and some medications

such as

> Synthroid, prednisone, and seizure medications. " -

> http://www.always.com/straight_talk/menopause/c4cContent.html

>

> " Although thyroid abnormalities can be associated with bone loss,

this is

> not necessarily the case with you. " -

> http://www.obgyn.net/osteo/osteo.asp?page=/osteo/ate_0301

[Guest guest]

I believe it would be T4 meds only because T3 works with and spares other

hormones. Progesterone prevents and reverses osteoporosis, maybe estrogen

does too, not sure.

Gracia

> thanks for the info - i didnt know either. this might be a very stupid

> question to ask but is it just synthroid or all thyroid meds? thanks

>

>

> >From: " mspac99 " <mspac99@...>

> >Reply-hypothyroidism

> >hypothyroidism

> >Subject: Osteoporosis

> >Date: Sun, 09 Jun 2002 17:55:08 -0000

> >

> >I have been taking synthroid for about 15 years, maybe longer. I

> >have been reading that synthroid can contribute to osteoporosis and

> >asked my doctor about it. She said she never heard about it!!! and

> >that taking synthroid is just like having your own body make it. (

> >not true) Nevertheless, I worried and took it upon myself to have a

> >bone density test and I DO have osteoporosis. So ladies, if you are

> >past menopause, get yourself up and get the bone density test before

> >it is too late. I wish someone would have told me a long time ago.

> >

> >

>

>

>

>

> _________________________________________________________________

> Join the world's largest e-mail service with MSN Hotmail.

> http://www.hotmail.com

>

>

>

[Guest guest]

My sister-in-law has osteoporosis and has had much damage regrown

using monitored very high dosage vitamen D along with Fosimax. I

don't know all the details, but the D level is so high you can only

get it with a prescription and dr's monitoring, AND it WORKS! Check

with your doctor about it. Fosamax stops the progression, but the D

reverses damage, as I understand it.

JudiRose

> To and anyone else who is suffering from osteop. It can

rob you of your quality of life in a heart beat. My mother has it

and she had a compression fracture. It was so bad I thought we might

lose her. There is a procedure called kyphoplasty which fixed her up

in one day. She has had it done twice more on very small

compressions and the results are the same.....instant relief. I

sincerely hope nobody ever gets a compression fracture but I wanted

to pass this on becaue the sooner you do it the better it works.

When she had the first one done the procedure was still in it's

infancy but doctors all over are doing it now. She takes fosamax now

too.

>

> Cheri :-))

>

>

>

[Guest guest]

I suspect osteo is like PA in that every person reacts differently to

medication. My rheumy has me on Actonel (35mg weekly) which is supposed to slow

and

in some cases reverse some of the bone loss along with 1000 mg/day of calcium

with vitamin D. For the PA, I am on Humira (one injection every two weeks),

Arava and Mobic. I can't say that I am in good shape by any means, however, I

am able to hold down a high stress job (SVP in a major bank) and live in a

high stress city (NYC). I have broken bones a couple of times, but not since I

have been on the Actonel. According to my bone density test, I have continued

to lose bone mass. Perhaps I would have lost even more if not for the Actonel

and the calcium/D. Getting around is increasingly difficult, but for now I

am able to do some of the things I enjoy.

The real message here is that people can suffer from PA and osteoporosis at

the same time. Especially if you are a postmenopausal female, please ensure

that your doctor gives you a bone density test periodically. It makes no sense

to be treated for PA only to discover that you are losing ground due to osteo.

Kathy

My sister-in-law has osteoporosis and has had much damage regrown

using monitored very high dosage vitamen D along with Fosimax. I

don't know all the details, but the D level is so high you can only

get it with a prescription and dr's monitoring, AND it WORKS! Check

with your doctor about it. Fosamax stops the progression, but the D

reverses damage, as I understand it.

JudiRose

[Guest guest]

In a message dated 11/11/2003 7:09:46 PM Eastern Standard Time,

Pugnfriend@... writes:

> . For the PA, I am on Humira (one injection every two weeks),

> Arava and Mobic.

HI Kathy,

I just wanted to know if you tried any other injectibles before the Humira.

I tried enbrel with not success and I am now waiting on Raptiva. I was going

to ask the rheumy about Humira or Remicade.

Janet

[Guest guest]

Hi Janet,

No, my rheumy went straight to Humira because he thought I would prefer an

injection that comes pre-mixed and only requires an injection every other week.

He said that in the clinical trials he was involved with, Enbrel worked

faster, but that at 3 months, the results from Enbrel and Humira were very

similar

so why not start with the easier medication instead of the more difficult. I

would definitely discuss all of your options with your doctor.

Sure hope you find something that works for you, Janet, because living with

this disease can be awfully difficult.

Best,

Kathy

> HI Kathy,

> I just wanted to know if you tried any other injectibles before the Humira.

>

> I tried enbrel with not success and I am now waiting on Raptiva. I was

> going

> to ask the rheumy about Humira or Remicade.

> Janet

>

[Guest guest]

Janet, how long did you stay on the embrel before you gave up on it?

I started two months ago. In the beginning I felt better and thought

it was working great. Now I seem to be back to my old limping,

complaining, grouchy self. But I understand you are supposed to give

it 3 months. Did you stick with it that long? Donna

> In a message dated 11/11/2003 7:09:46 PM Eastern Standard Time,

> Pugnfriend@a... writes:

>

> > . For the PA, I am on Humira (one injection every two weeks),

> > Arava and Mobic.

>

> HI Kathy,

> I just wanted to know if you tried any other injectibles before the

Humira.

> I tried enbrel with not success and I am now waiting on Raptiva. I

was going

> to ask the rheumy about Humira or Remicade.

> Janet

>

>

>

[Guest guest]

In a message dated 11/13/2003 12:14:49 AM Eastern Standard Time,

weaverdb2000@... writes:

>

> Janet, how long did you stay on the embrel before you gave up on it?

> I started two months ago. In the beginning I felt better and thought

> it was working great. Now I seem to be back to my old limping,

> complaining, grouchy self. But I understand you are supposed to give

> it 3 months. Did you stick with it that long? Donna

HI Donna,

I gave it six months and then my rheumy took me off of it. He said that I

should not take such strong medication if it is not helping me. I am waiting to

get approved for Raptiva and right now my prescription plan does not have it

in their formulary. They told me I would have a $500.00 co payment. It is a

new drug and just approved by the FDA so I am going to give it a little more

time. I don't want to pay that much for a drug that I don 't even know will

work.

Janet

[Ed. Note: I think it would be a great idea if people would mention what

specific health insurance provider they have when discussing benefit issues.

Maybe we should even start an information database about the various providers

just as we have for doctors. For instance, in January my employer (actually

ex-employer) is changing from a Blue Cross 500 PPO medical insurance plan to a

Health Net PPO medical insurance plan, and I know nothing whatsoever about

Health Net except for the propaganda they publish. Ron]

[Guest guest]

OSCAL is a popular calcium supplement. Fossamax actually helps

reverse the Osteo. Testosterone also helps, as does weight lifting...

Regards,

K4

> Can anyone recommend supplemets to fight bone loss?

> Thanks

>

[Guest guest]

,

There is research published showing supplimentaiton with Potassium

Bicarbonate may reverse or prevent osteo. Here is a link to an

initial study I found:

http://content.nejm.org/cgi/content/short/331/19/1312

And here is another showing reduced nitrogen excretion

http://www.mgwater.com/khco3.shtml

The concept is that Potassium Bicarb evens out your body's acid

balance and preserves calcium waisting from your body's stores

(bones). The serum bicarbonate is the major buffer in the body,

helping to maintain the proper blood pH. Proper blood pH is essential

to life.

Here is another good article

http://www.smw.ch/pdf200x/2001/09/smw-09666.pdf

Another article I read (do not have it handy) detailed how

supplimenting with Potassium Bicarb could help those fitting HIV to

maintain lean muscle mass.

A lot of bodybuilding products on the market contain Potassium Bicarb

to promote proper blood PH. I began taking Alka-seltzer Gold (which

is the only Alka-Seltzer product with Potassium Bicarb) but now

encapsulate my own. I buy food grade Potassium Bicarb used for Wine

Making.

Good luck.

y

> > Can anyone recommend supplemets to fight bone loss?

> > Thanks

> >

[Guest guest]

In a message dated 11/15/2003 4:38:30 AM Eastern Standard Time, fam24@...

writes:

> HI Donna,

> I gave it six months and then my rheumy took me off of it. He said that I

> should not take such strong medication if it is not helping me. I am

> waiting to

> get approved for Raptiva and right now my prescription plan does not have it

>

> in their formulary. They told me I would have a $500.00 co payment. It is

> a

> new drug and just approved by the FDA so I am going to give it a little more

>

> time. I don't want to pay that much for a drug that I don 't even know

> will

> work.

> Janet

>

>

> [Ed. Note: I think it would be a great idea if people would mention what

> specific health insurance provider they have when discussing benefit issues.

My plan is through GHI which is Group Health INC. I believe it may just be

in NY and is primarily given to city employees. I also just wanted to let you

know that I am going to try to start working again after a year. I used to

work in a physician's office as a medical assistant but can no longer stand on

my feet very long. I am now going to do life insurance exams for a company

that processes the exams before they will grant someone insurance. It consists

of going to the persons house and drawing blood, blood pressure and EKG.

Janet