Re: osteopenia

[Guest guest]

Hi Group - As most of you know, my dr. put me on mtx in an

effort to 1. get me off the pred. and 2. to get the

inflammation under control so the AP can work. And most of

you know how I agonized over taking it (thanks for your help

and comments.)

I've been on it for about 8 weeks now. Have gone from 2.5

mgs to 17.5, where I am to stay until I see the doctor in

September. My pred has gone from 9 mgs to 7 mgs -

Hurray!!!! (Originally on 10 mgs) I'll try dropping another

..5 mgs this week. Finding that I have to take it REALLY

slow. So far my blood work (done every 2 weeks) is doing

just great - everything normal.

And now I know why some people might think this is a great

drug....I rode my bike about 2 miles last night!!! And talk

about running up and down the stairs...they're a breeze!!!

I can take the stairs in my building from the 4th floor to

the 8th without any problem...except that I've lost a lot of

muscle from being so inactive the past 18 months. I can't

remember when I felt this good. It had to have been prior

to RA. There's a little part of me that wants to think I'm

feeling good because I'm getting well but my rational mind

says it's probably the mtx.

So my report is that I haven't yet gotten any complications

or reactions on mtx...the dose is really low...and my pred

consumption is down...and I'm feeling great. For today, I'm

very happy with that. And for today, I'm happy with my

decision to try the mtx. And I'm hoping and praying that

the Mino is working like mad. No, I don't know what

tomorrow will bring but I'll face that when I come to it. I

had an experience today that helped put this into

perspective. I buried a very dear friend that, within a

couple of short months, suffered 2 heart attacks and then

came down with cancer. She was only 51 years old!

Lea

HOLMES, MARK T. wrote:

> Some of you may remember my x-ray report that I posted a

> few days ago. I had sent my doc an email asking about

> osteopenia, as it was of some concern to me. Here's his

> answer, which helped to set my mind at ease some, and I

> thought it was important enough to share. (Please

> understand that this is only in the spirit of sharing -

> not meant to incite or excite!) 2) Osteopenia in your

> x-rays - the finding of osteopenia in the

> bones near sites of inflammation in RA is more an

> indication of increased

> bloodflow and inflammation in the areas of the joints

> and does NOT

> correlate with generalized osteoporosis - the kind that

> can lead to

> pathologic fractures etc... There is some increase in the

> risk for

> ostoporosis in RA in general but not anywhere near the

> risk from prolonged

> steroid use. You are also protected by being male. 1000 mg

> of calcium a day

> (e.g 2 extra strength TUMS) and 800 IU vitamin D daily

> should be good

> prophylaxis for you. If you are really worried about this

> issue you should

> ask for a bone densitometry test (a kind of quantitative

> x-ray of the spine

> and hip). On male RA patients with no other risk factors I

> would not

> routinely do this He also went on to say this. 3) wording

> of the xray reports - since the xrays are read by

> different radiologists they may describe them in different

> ways - our

> consensus on reviewing all of them was that you did not

> have significant

> erosions on the first study in 1998( 3 months after I

> first got RA), but you did in February '99 and this month

> (August '99).The exact location is not as important as the

> progression - none of the erosions are large enough to

> lead to functional impairment by themselves That also

> relieved me a (tiny) bit, but obviously not good that the

> problem marches on. I am impressed that this doctor

> continues to respond to me, despite my stubbornness

> regarding the taking of methotrexate (something that will

> probably surprise you). Obviously he adheres to the final

> 3 paragraphs of the NY Times article he sent me - or at

> least he's trying. He even stated the following as an

> alternative (after I had sent him a few horror stories of

> metho with names withheld) 4) re: Methotrexate - as I said

> before, there are over 1

> million people with RA in the country - therefore you can

> find anecdotes of

> every conceivable reaction to every therapy. It sounds

> like the thought of

> taking any medicine that is potentially immunosuppressive

> does not appeal to

> you at this time. You may want to consider sulfasalazine,

> an antibiotic

> derivative with no immunosuppressive properties that is a

> proven

> disease-modifying drug in RA, although not believed to be

> as potent as MTX

>

> some info available at this url:

> http://www.onhealth.com/ch1/reso

> rce/pharmacy/drug/item,30970.asp(this looks like it is a

> very good drug database) (Personally, I would probably go

> the metho route (and still keep taking minocycline),

> should I decide to do this. I did hear a positive metho

> story today from a friend of my brother-in-law who has

> been on metho for 3 years now with no side effects and is

> back to playing golf again every day (something that I

> could not do now no matter how much I might try). this

> after being on prednisone levels of 40mg/day for a number

> of years, getting 2 new hips and a new knee. (he is

> finally down to .5 mg/day of pred.)His wife said he is

> like a new person, so this is encouraging info for me

> personally (I stress the " me personally " ).

> ) Markhttp://members.tripod.com/~Mark_Holmes

> RA 4/98 AP 7/98

> Minocycline (Lederle generic) 100mg 2x/day MWF;Zithromax

> 500mg T,Sa; Lodine 400mg 3x/day;Zone Diet;;Slippery

> Elm;Fish Oil(9 caps/day);Milk

> Thistle;bromelain;boswellia;glucosamine(1500mg)

> RA Chat -

> http://members.tripod.com/~Mark_Holmes/RA/ra.html

> ICQ 18123139

>

>

> Mark Holmes http://members.tripod.com/~Mark_Holmes

> RA 4/98 AP 7/98

> Minocycline (Lederle generic) 100mg 2x/day MWF;Zithromax

> 500mg T,Sa; Lodine 400mg 3x/day;Zone Diet;;Slippery

> Elm;Fish Oil(9 caps/day);Milk

> Thistle;bromelain;boswellia;glucosamine(1500mg)

> RA Chat -

> http://members.tripod.com/~Mark_Holmes/RA/ra.html

> ICQ 18123139

[Guest guest]

----- Original Message -----

From: Todd R. Barber

Sent: Thursday, August 16, 2001 9:12 AM

Subject: [ ] osteopenia

Judging by this information from the National Institute of Health, it appears

that anorexia can cause Osteo pretty fast.

Now I'm not suggesting that anorexia and CR are the same thing, but there are

some common factors (weight loss,

testosterone reduction, and dietary restriction).

Has anyone in the group (other than the biosphere folks) been tested with a DEXA

and not had signs of osteo who has been

on CR for at least 4 months?

Hi Todd,

Shirley & I are fine but we take supplements to boost GH, T & lower Cortisol

which to some here is seen as a very bad

idea......

Like wise we eat heaps of fish & take fish oil capsules, which by some is also

seen as unwise............

http://members.ozemail.com.au/~gowatson/

http://members.ozemail.com.au/~gowatson/aging.html

http://www.ozemail.com.au/~gowatson/protocol.html

Greg

[Guest guest]

Hi Greg,

I have been following your routine since the begining...I take an amino acid stack (same ones as you except one (I can't remember the name..starts with an A I think which I avoid because it gives me canker sores in my mouth.) before food in the morning for Growth Hormone increase as well as my anerobic workouts, I'm taking DHEA for testosterone, And I eat samon almost every day and take EPA/DHA (esters) daily.

what do you take to lower cortisals?

Thanks,

Todd R. BarberChairman, Reef Ball FoundationCEO, Reef Ball Development Group, Ltd.6916 22nd Street WestBradenton, FL 34207941-752-0169 (Office)941-752-0338 (Direct Line)941-752-1033 Fax941-720-7549 Cellreefball@...http://www.artificialreefs.orghttp://www.reefball.comhttp://www.reefball.org

----- Original Message -----

From: Greg

Sent: Wednesday, August 15, 2001 8:11 PM

Subject: Re: [ ] osteopenia

----- Original Message -----From: Todd R. Barber Sent: Thursday, August 16, 2001 9:12 AMSubject: [ ] osteopeniaJudging by this information from the National Institute of Health, it appears that anorexia can cause Osteo pretty fast.Now I'm not suggesting that anorexia and CR are the same thing, but there are some common factors (weight loss,testosterone reduction, and dietary restriction).Has anyone in the group (other than the biosphere folks) been tested with a DEXA and not had signs of osteo who has beenon CR for at least 4 months?Hi Todd,Shirley & I are fine but we take supplements to boost GH, T & lower Cortisol which to some here is seen as a very badidea......Like wise we eat heaps of fish & take fish oil capsules, which by some is also seen as unwise............http://members.ozemail.com.au/~gowatson/http://members.ozemail.com.au/~gowatson/aging.htmlhttp://www.ozemail.com.au/~gowatson/protocol.htmlGreg

[Guest guest]

----- Original Message -----

From: Todd R. Barber

Sent: Thursday, August 16, 2001 10:53 AM

Subject: Re: [ ] osteopenia

Hi Greg,

I have been following your routine since the begining...I take an amino acid

stack (same ones as you except one (I can't

remember the name..starts with an A I think which I avoid because it gives me

canker sores in my mouth.)

[Canker sores? What did that?????]

What do you take to lower cortisals?

Hi Todd,

To answer that will open a new thread.

Quite some time ago, about when I first came on board, the elevated Cortisol

seen in rodent and human CRing was seen to

be a part of the Cr scene by our guiding lights. I was even told elevated

cortisol was good as it indicated you were in

the CR Zone!

I think otherwise as Cortisol is a very catabolic hormone which signals a body

in energy deficit and it will tear apart

muscle to get the energy needed to bring the body into energy balance. With

elevated cortisol bone growth (well really

ALL growth) will be inhibited.

Part of controlling Cortisol involves controlling Insulin, well Insulin not

going too low. Some here see Insulin as a

enemy when in actually Insulin is a very necessary anabolic hormone. The idea

that streaming carbs and oil into the

body to get a flat insulin responce to a meal is, in my opinion, not a good idea

as the body never " Sees " the Insulin

peaks and hence the energy excess " Peaks " .

Generally the higher your insulin the lower your cortisol. Of course there is a

happy medium.

The bottom line, don't be afraid of insulin peaks (there are anabolic, growth

enhancing) as they reduce cortisol peaks,

work to improve glucose disposal rates (less insulin resistance, more glycogen

storage capacity) so the insulin peaks

don't mean excess glucose peaks.

Greg

[Guest guest]

[Canker sores? What did that?????]

ORAL HERPES TYPE II, IT NEEDS Arginine TO REPRODUCE WHEREAS LYSINE INTERFERES WITH THIS.What do you take to lower cortisals?

THIS MAY BE A FACTOR BECAUSE I HAVE BEEN CONTROLING GLUCOSE IN A VERY TIGHT BAND (84-110) AND MY FASTING GLUCOSE IS MUCH LESS. PERHAPS I NEED TO ADD WHOLE GRAINS BACK INTO MY DIET AS THEY SEND GLUCOSE HIGH.

Thanks,

Todd R. BarberChairman, Reef Ball FoundationCEO, Reef Ball Development Group, Ltd.6916 22nd Street WestBradenton, FL 34207941-752-0169 (Office)941-752-0338 (Direct Line)941-752-1033 Fax941-720-7549 Cellreefball@...http://www.artificialreefs.orghttp://www.reefball.comhttp://www.reefball.org

Hi Todd,To answer that will open a new thread.Quite some time ago, about when I first came on board, the elevated Cortisol seen in rodent and human CRing was seen tobe a part of the Cr scene by our guiding lights. I was even told elevated cortisol was good as it indicated you were inthe CR Zone!I think otherwise as Cortisol is a very catabolic hormone which signals a body in energy deficit and it will tear apartmuscle to get the energy needed to bring the body into energy balance. With elevated cortisol bone growth (well reallyALL growth) will be inhibited.Part of controlling Cortisol involves controlling Insulin, well Insulin not going too low. Some here see Insulin as aenemy when in actually Insulin is a very necessary anabolic hormone. The idea that streaming carbs and oil into thebody to get a flat insulin responce to a meal is, in my opinion, not a good idea as the body never "Sees" the Insulinpeaks and hence the energy excess "Peaks".Generally the higher your insulin the lower your cortisol. Of course there is a happy medium.The bottom line, don't be afraid of insulin peaks (there are anabolic, growth enhancing) as they reduce cortisol peaks,work to improve glucose disposal rates (less insulin resistance, more glycogen storage capacity) so the insulin peaksdon't mean excess glucose peaks.Greg

[Guest guest]

----- Original Message -----

From: Todd R. Barber

Sent: Thursday, August 16, 2001 10:26 PM

Subject: Re: [ ] osteopenia

[Canker sores? What did that?????]

ORAL HERPES TYPE II, IT NEEDS Arginine TO REPRODUCE WHEREAS LYSINE INTERFERES

WITH THIS.

Hi Todd,

The Lysine should have stopped that happening. Maybe you should put the powder

into capsules.

Greg

[Guest guest]

In a message dated 5/17/2005 6:33:51 PM Eastern Standard Time,

writes:

Hi Dean

May I refer you to my replies to Steve of 5th May? This one includes web URL

for the National Osteoporosis Society here in the UK with various links and

documents.

Missed that post, Thanks!

[Guest guest]

Dear ,

With us majorly fused people we should take our bone quality very seriously. My doc found after my last revision that an area of my spine was looking osteoporitic, so he sent me to an oncologist that handles bone density issues. I was put on monthly I.V. treatments of Aredia, a drug that a lot of bone cancer patients do. I did these treatments for a year. Now I'm on Fosamax and will have another bone density test in june of next year. My last bone density test showed that in my hip I had osteopenia. They are treating me aggresively since I have a ton of fusions T1 to S1. Since my scoliosis wants to go hard to the right, they took out my titanium hardware and put in Stainless steel in my last revision and they want to keep all my hardware in place. My bone doc has never treated anyone with the amount of fusions I have, so he's erroring on the side of being aggressive. I will let you know how things turn out in June, if this all has worked for me. I'm only 46, and have been in this osteoporosis battle for two years now. The battle with my spine continues, at least at this moment I'm winning!

Colorado Springs

[ ] Osteopenia

I was wondering if anyone has had this experience. I had a bone density scan done a couple of months ago and was told that everything was normal. I just received a copy of the radiologist's report from x-rays I had in mid-July and the radiologist notes that osteopenia is observed. If it is obvious in an x-ray, why would a bone denisty scan come back as normal? I wouldn't be terribly concerned, but since the hardware from my revision surgery was removed in November my lumbar curve has started to increase. As well as the doctor's notes I received from my mid-July appointment notes that there is degenerative disk disease of the lumbar spine. I had thought that revision surgery with A/P fusion to S1 would resolve the DDD. Am I somehow confused as to what I thought the revision surgery would do for me? And of course my thoracic curve decided to move as well, it had stayed put for many years and now suddenly decided to take off. Could the stress from the lumbar curve moving cause the thoracic curve to move too? I am just kind of thinking out loud here, I have been reading and rereading these notes today and I have gotten myself all worked up about something that probably isn't even a problem. I think I would have been better off if I would have never seen these recent notes.

[Guest guest]

-

They still have waterbed stores here in Southern California also! I was addicted to them after my original surgery. We had one all through the 70's 80's and 90's, and yes they are just as comfortable as they ever were. I had a hard time sleeping on anything but one. That is, until I had my revision surgery. Once I was fused to the sacrum (and please excuse this pun) I floundered around on one like a fish out of water. I couldn't turn at all, sit up at all, and roll over?...HA! And to get out of it I had to be pulled. So I found myself sleeping in the spare bedroom. And for the first time in 30-odd years I found I had to look into a conventional bed. I found the pillow top very comfortable, and haven't had any problems sleeping in 4 years.

~~