update

[Guest guest]

-- Too much brain fog.

Hi Janet,

I am bothered by brain fog too. Sometimes I'll be out and someone

will ask me a question and my brain just won't spit the answer out. I

feel like saying..this isn't really me usually I'm much sharper than

this. It can be embarrasing. One night I was reading a novel to relax

and reread the same paragraph about 4 times before I fiqured out I

had no idea what was going on in the book and it wasn't too

relaxing...usually happens in humid weather or when a front is moving

in. Anyway, maybe the nursing degree will work out for you someday,

I think 50 is still young and we definitely need good nurses.

Best Wishes,

Marti

[Guest guest]

In a message dated 5/19/2003 4:29:05 PM Eastern Daylight Time, mlw402@...

writes:

> One night I was reading a novel to relax

> and reread the same paragraph about 4 times before I fiqured out I

> had no idea what was going on in the book and it wasn't too

> relaxing...

I know I just sent this but I hit the worng button. I know what you mean

Marti. Some of my friends share novels and I just can't get into reading

right now because my comprehension is terrible. I also hear some things come

out of my mouth like I am a dumb blonde and I know I am smarter then that.

This morning I couldn't remember which pill I took. The thyroid? diurectic?

Nsaid? I feel like I need IV coffee in the morning.

Janet

[Ed. Note: Did you take the Blue pill or the Red pill? ;-) Note: This comment

will only make sense to those who have seen the movie " The Matrix " . Ron]

[Guest guest]

Janet,

I see my ENT again next week. he is supposed to do allergy tests on me. I

would love it if it could that simple and I would kick my doc for not testing me

sooner. My sinuses are worse now, my ulcers hurt and today I got a nose bleed.

I still have 10 more days on antibiotics. If that doesn't kill it I don't know

what I'll do.

Thanks,

[Guest guest]

<<This morning I couldn't remember which pill I took. The thyroid?

diurectic? said? I feel like I need IV coffee in the morning.Janet>>

I had to go with a mediset box. Still possible to mix it up somehow

with bad brain fog....IV coffee in a.m. sounds like a good idea to

me. Take Care,

Marti

[Guest guest]

Coffee IV - sounds GREAT to me. I have had the brain fog thing when I set up

my medication, I have heart meds, Hight blood pressure meds, Asthma meds, and

PA meds plus the vitamins my Dr. recommends/prescribes. I usually order all

the meds mail order, so I get a 3 month supply. Can be a real challenge to

set up. I have AM and PM meds boxes, and then I have a larger box (used to be a

locked fishing tackle box when I had kids in the house) with all the bottles.

I remove every bottle from the box, when I set up the pills in the various

days, and times. This is way nothing gets left behind. I also do this for my

husband. He jokes about his & hers pill tackle boxes???? This also helps me

keep the specific bottles together, and reorder process. Someone in this

group suggested this to me, and it really works. I also set up all the

vitamins,

just like Rx medication. I keep a written copy of all medication, strength,

when taken, along with vitamins, and allergies on a card in my wallet, planner,

in my husband's wallet, etc. I also keep a copy for him, as well. This is

in addition to the medic alert bracelet I wear. At first it felt funny to be

so careful, but my Rheumy has praised me a number of times for being so

organized.

Hope this helps,

Carol M.

[Guest guest]

> I have a larger box (used to be a

> locked fishing tackle box when I had kids in the house) with all the

> bottles. I remove every bottle from the box, when I set up the pills in the

> various days, and times.

Carol, I am going to get a box like this and set it up for my daily routine.

I have so many pills that I am getting confused when I take it one. Thanks

for the advice.

Janet

[Guest guest]

Ron,

Thanks, I go 6/2 to see my rheumy. I'll see if maybe I can increase my Enbrel

injections before adding or switching meds. I guess the smart thing would be to

add mtx or arava. Those meds just scare me because of the liver toxicity. I'll

ask my doc about arava again since I felt so crappy on the mtx. If I do have to

take mtx that doc is going to have to put me on disability b/c I am struggling

to work as it is and on mtx I know I can't. I'm drained as it is...

When I finally make it to LA we can meet up.

take care,

leslie

[ ] Re: Update

> Ron,

>

> Well, Humira (at $400) is cheaper than Enbrel ($1600) then.

> Do you think it would be best to try Arava or MTX

> with Enbrel before I move on to Humira?

If I were you, that's what I would do. Although it's not necessary to

take MTX along with Enbrel or Humira, MTX in itself helps alleviate

PA so perhaps you need to take a " double-barreled " approach (ie; a

biologic + MTX). Personally, I prefer Arava over MTX very much,

because the side effects from MTX were terrible, but I have no side

effects from Arava at all except for some tinnitus in my ears. It's

just my personal opinion but since all the biologics are TNF

inhibitors, I assume they all work pretty much the same and that if

one doesn't help another probably won't either. If you do switch to

Humira, I would definitely try to get my rheumy to prescribe weekly

injections rather than bi-weekly injections if I were you (or maybe

you could increase the frequency of the Enbrel injections?).

> LA is also one of the cities I want to visit.

> A lot of fun stuff to do there too.

Be sure and stop by to visit if you're ever in the area. I live in La

Crescenta. It's just North of Glendale and West of Pasadena. :-)

>

> take care,

>

>

You too,

-- Ron

[Guest guest]

thank you ron for answering my question ..

monica laurita <monka825@...> wrote:hello everyone is it ok to get the

flue shot. i'm takeing enbrel for three months now .. please help . thanks

monica NY

[Ed. Note: There seems to be some differing opinions on that . My rheumy

gives me a flue shot every year, but some say their rheumatologists recommend

against it - so the best advice is probably to consult your doctor. Ron]

[Guest guest]

,

Unfortunately, it doesn't take much TRT to shut down sperm

production. You are also correct that your body will respond to a low

dose of TRT and shut down what little natural production you have.

Has your MD told you if you had Primary or Secondary Hypogonadism?

Your lab results look as if its Primary, which means you may already

be suffering from a low sperm count. Have you had that checked? Also,

how old are you? We have an interesting chart in the " links " section

you may want to look at. It gives normal T levels by age.

To answer your other questions - most insurance companies cover

hypogonaism well. Some do not cover Androgel, Testim, or other modern

forms of TRT. Also, some men do have their sperm production come back

naturally after being off TRT, but this is not always the case. The

duration on TRT and the type of hypogonadism are factors.

The other thing to note here - no matter what the lab results are,

the most critical measurement of all is how YOU feel! Every man is

different, and has different " normal " hormone levels. If your doctor

is locked into lab ranges and isn't willing to listen to how you

feel, you may going to the wrong doctor....

Regards,

K4

> Hi All,

> It's been a while since I posted so I thought I would post an

update.

>

> I recently had two lab tests. The first was requested by my doc and

> is as follows:

>

> Total Serum Testosterone: 408 (400-1080) ng/dL

> Free T4: 0.75 (0.71-1.85) nd/dL

> Thyroid Stimulating Hormone: 1.55 (0.45-4.67) uIU/mL

> FSH: 5.2 (1.0-8.0) mU/mL

> LH: 7.0 (2.0-12.0) mU/mL

> Prolactin: 13.8 (1.6-18.8) ng/mL

>

> My doc said that although the total T was on the low end, it was

> still in the range of normal so would probably be okay. About a

week

> later I got a cancellation appt. with an endo and he ordered the

next

> test. I decided to have the lab work done a little later in the day

> so that the T would fall a little bit below normal (hoping this

would

> prompt the endo to help me out). The results are as follows:

>

> Total Serum Testosterone: 388 (400-1080) ng/dL

> SHBG: 18 (13-71) nmol/L

> Albumin: 4.4 (3.3-4.8) g/dL

> Free Testosterone: 95.0 (50-210) pg/mL

> Free Testosterone %: 2.4 (1.6-2.9)

> Bioavailable Testosterone: 259.3 (130.5-681.7) ng/dL

> Estradiol: 28 (<=77) pg/mL

> HCG, Beta Quantitative: <2 (<5) mIU/mL

>

> So, now I am waiting for my endo or doc to call me next week

> regarding my results. I asked my endo abt the Clomiphene

stimulation

> test and he said it wasn't necessary because my LH and FSH were

> normal. He said that if my lab results came out low for T, then he

> could give me a low dose of TRT. But I have been told before that a

> low dose would make things worse since it would shut of natural T

> production. I asked the endo and he said it would just slow natural

> production down and not shut it off. One of my concerns is that it

> would shut off sperm production. He says that it would just slow it

> down a little bit, but not shut it off. If you did go on TRT and

then

> stopped, would natural T production come back? Anyone have any

> feedback for me?

>

> Also, is hypogonadism diagnosis/treatment something generally

covered

> by insurance? My insurance company is supposed to be good, but they

> have been very anal lately about paying for tests, etc. Any helpful

> tips on dealing with them?

>

> Thanks!

>

[Guest guest]

, I concur with Kaitain.

Everyone's body is a bit different, but exogenous T has a risk of

stopping your body's production of T, even a little bit. From your

tests, it appears that you may be primary, i.e. your testes are not

producing enough T.

Your overall T is " low " , but your bioavailable T looks allright.

How do you feel? That is an important factor for your endo to

consider. Many people function better in the upper quadrant of T.

With respect to insurance...stay away from the word fertility or

sexual disfunction and you should be ok. Hypogonadism is usually

covered.

Good Luck

> > Hi All,

> > It's been a while since I posted so I thought I would post an

> update.

> >

> > I recently had two lab tests. The first was requested by my doc

and

> > is as follows:

> >

> > Total Serum Testosterone: 408 (400-1080) ng/dL

> > Free T4: 0.75 (0.71-1.85) nd/dL

> > Thyroid Stimulating Hormone: 1.55 (0.45-4.67) uIU/mL

> > FSH: 5.2 (1.0-8.0) mU/mL

> > LH: 7.0 (2.0-12.0) mU/mL

> > Prolactin: 13.8 (1.6-18.8) ng/mL

> >

> > My doc said that although the total T was on the low end, it was

> > still in the range of normal so would probably be okay. About a

> week

> > later I got a cancellation appt. with an endo and he ordered the

> next

> > test. I decided to have the lab work done a little later in the

day

> > so that the T would fall a little bit below normal (hoping this

> would

> > prompt the endo to help me out). The results are as follows:

> >

> > Total Serum Testosterone: 388 (400-1080) ng/dL

> > SHBG: 18 (13-71) nmol/L

> > Albumin: 4.4 (3.3-4.8) g/dL

> > Free Testosterone: 95.0 (50-210) pg/mL

> > Free Testosterone %: 2.4 (1.6-2.9)

> > Bioavailable Testosterone: 259.3 (130.5-681.7) ng/dL

> > Estradiol: 28 (<=77) pg/mL

> > HCG, Beta Quantitative: <2 (<5) mIU/mL

> >

> > So, now I am waiting for my endo or doc to call me next week

> > regarding my results. I asked my endo abt the Clomiphene

> stimulation

> > test and he said it wasn't necessary because my LH and FSH were

> > normal. He said that if my lab results came out low for T, then

he

> > could give me a low dose of TRT. But I have been told before that

a

> > low dose would make things worse since it would shut of natural T

> > production. I asked the endo and he said it would just slow

natural

> > production down and not shut it off. One of my concerns is that

it

> > would shut off sperm production. He says that it would just slow

it

> > down a little bit, but not shut it off. If you did go on TRT and

> then

> > stopped, would natural T production come back? Anyone have any

> > feedback for me?

> >

> > Also, is hypogonadism diagnosis/treatment something generally

> covered

> > by insurance? My insurance company is supposed to be good, but

they

> > have been very anal lately about paying for tests, etc. Any

helpful

> > tips on dealing with them?

> >

> > Thanks!

> >

[Guest guest]

Great tip there Tallen. If you even breathe a WORD about fertility to

an insurance company they won't ccover a thing...

K4

> > > Hi All,

> > > It's been a while since I posted so I thought I would post an

> > update.

> > >

> > > I recently had two lab tests. The first was requested by my doc

> and

> > > is as follows:

> > >

> > > Total Serum Testosterone: 408 (400-1080) ng/dL

> > > Free T4: 0.75 (0.71-1.85) nd/dL

> > > Thyroid Stimulating Hormone: 1.55 (0.45-4.67) uIU/mL

> > > FSH: 5.2 (1.0-8.0) mU/mL

> > > LH: 7.0 (2.0-12.0) mU/mL

> > > Prolactin: 13.8 (1.6-18.8) ng/mL

> > >

> > > My doc said that although the total T was on the low end, it

was

> > > still in the range of normal so would probably be okay. About a

> > week

> > > later I got a cancellation appt. with an endo and he ordered

the

> > next

> > > test. I decided to have the lab work done a little later in the

> day

> > > so that the T would fall a little bit below normal (hoping this

> > would

> > > prompt the endo to help me out). The results are as follows:

> > >

> > > Total Serum Testosterone: 388 (400-1080) ng/dL

> > > SHBG: 18 (13-71) nmol/L

> > > Albumin: 4.4 (3.3-4.8) g/dL

> > > Free Testosterone: 95.0 (50-210) pg/mL

> > > Free Testosterone %: 2.4 (1.6-2.9)

> > > Bioavailable Testosterone: 259.3 (130.5-681.7) ng/dL

> > > Estradiol: 28 (<=77) pg/mL

> > > HCG, Beta Quantitative: <2 (<5) mIU/mL

> > >

> > > So, now I am waiting for my endo or doc to call me next week

> > > regarding my results. I asked my endo abt the Clomiphene

> > stimulation

> > > test and he said it wasn't necessary because my LH and FSH were

> > > normal. He said that if my lab results came out low for T, then

> he

> > > could give me a low dose of TRT. But I have been told before

that

> a

> > > low dose would make things worse since it would shut of natural

T

> > > production. I asked the endo and he said it would just slow

> natural

> > > production down and not shut it off. One of my concerns is that

> it

> > > would shut off sperm production. He says that it would just

slow

> it

> > > down a little bit, but not shut it off. If you did go on TRT

and

> > then

> > > stopped, would natural T production come back? Anyone have any

> > > feedback for me?

> > >

> > > Also, is hypogonadism diagnosis/treatment something generally

> > covered

> > > by insurance? My insurance company is supposed to be good, but

> they

> > > have been very anal lately about paying for tests, etc. Any

> helpful

> > > tips on dealing with them?

> > >

> > > Thanks!

> > >

[Guest guest]

Hi ,

I think you should find a new doctor, it might be better to find a

doctor that treats hypogonadism instead of an endochronologist. From

what I've read from many others there are many endo's that don't know

much about HCG and Clomiphine.

I went doctors in the past that wouldn't treat me saying my hormone

levels were within range, and this made me even more depressed. I was

able to find a good urologist recently which really listened to what

I had say, and it also helped that he had other patients with similar

propecia side effects, but he told he didn't know how to treat them.

Im grateful for groups like this so I showed him some of the post

from the message boards from this group and the finisteraide group,

and he's referring me to a hypogonadism expert, which I'll be seeing

at the end of the month.

I think your problems were most likely caused by propecia and if I

remember right you and your wife were also looking to have kids, if

that's the case I would definately stay off the TRT treatments, from

my understanding of what TRT would do.

Good Luck!

> Hi All,

> It's been a while since I posted so I thought I would post an

update.

>

> I recently had two lab tests. The first was requested by my doc and

> is as follows:

>

> Total Serum Testosterone: 408 (400-1080) ng/dL

> Free T4: 0.75 (0.71-1.85) nd/dL

> Thyroid Stimulating Hormone: 1.55 (0.45-4.67) uIU/mL

> FSH: 5.2 (1.0-8.0) mU/mL

> LH: 7.0 (2.0-12.0) mU/mL

> Prolactin: 13.8 (1.6-18.8) ng/mL

>

> My doc said that although the total T was on the low end, it was

> still in the range of normal so would probably be okay. About a

week

> later I got a cancellation appt. with an endo and he ordered the

next

> test. I decided to have the lab work done a little later in the day

> so that the T would fall a little bit below normal (hoping this

would

> prompt the endo to help me out). The results are as follows:

>

> Total Serum Testosterone: 388 (400-1080) ng/dL

> SHBG: 18 (13-71) nmol/L

> Albumin: 4.4 (3.3-4.8) g/dL

> Free Testosterone: 95.0 (50-210) pg/mL

> Free Testosterone %: 2.4 (1.6-2.9)

> Bioavailable Testosterone: 259.3 (130.5-681.7) ng/dL

> Estradiol: 28 (<=77) pg/mL

> HCG, Beta Quantitative: <2 (<5) mIU/mL

>

> So, now I am waiting for my endo or doc to call me next week

> regarding my results. I asked my endo abt the Clomiphene

stimulation

> test and he said it wasn't necessary because my LH and FSH were

> normal. He said that if my lab results came out low for T, then he

> could give me a low dose of TRT. But I have been told before that a

> low dose would make things worse since it would shut of natural T

> production. I asked the endo and he said it would just slow natural

> production down and not shut it off. One of my concerns is that it

> would shut off sperm production. He says that it would just slow it

> down a little bit, but not shut it off. If you did go on TRT and

then

> stopped, would natural T production come back? Anyone have any

> feedback for me?

>

> Also, is hypogonadism diagnosis/treatment something generally

covered

> by insurance? My insurance company is supposed to be good, but they

> have been very anal lately about paying for tests, etc. Any helpful

> tips on dealing with them?

>

> Thanks!

>

[Guest guest]

>> > >

> > > Total Serum Testosterone: 408 (400-1080) ng/dL

> > > Free T4: 0.75 (0.71-1.85) nd/dL

> > > Thyroid Stimulating Hormone: 1.55 (0.45-4.67) uIU/mL

> > > FSH: 5.2 (1.0-8.0) mU/mL

> > > LH: 7.0 (2.0-12.0) mU/mL

> > > Prolactin: 13.8 (1.6-18.8) ng/mL

> > >

> > > My doc said that although the total T was on the low end, it was

> > > still in the range of normal so would probably be okay.

Okay for what? Your data says that you have a T level that is lower than

about 94% of men in the age range of 18-80. (and in that range are many men

who are sick, elderly, hypogonadal, etc).

Winter

_________________________________________________________________

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[Guest guest]

Hi ,

My apologies for suggesting to change doctors, as Im just recently

learning about hypogonadism. My suggestion of changing doctors most

likely resulted from my frustration with finding good doctors myself.

I think many others on this list will have better advice for you then

me.

Good Luck!

> > Hi All,

> > It's been a while since I posted so I thought I would post an

> update.

> >

> > I recently had two lab tests. The first was requested by my doc

and

> > is as follows:

> >

> > Total Serum Testosterone: 408 (400-1080) ng/dL

> > Free T4: 0.75 (0.71-1.85) nd/dL

> > Thyroid Stimulating Hormone: 1.55 (0.45-4.67) uIU/mL

> > FSH: 5.2 (1.0-8.0) mU/mL

> > LH: 7.0 (2.0-12.0) mU/mL

> > Prolactin: 13.8 (1.6-18.8) ng/mL

> >

> > My doc said that although the total T was on the low end, it was

> > still in the range of normal so would probably be okay. About a

> week

> > later I got a cancellation appt. with an endo and he ordered the

> next

> > test. I decided to have the lab work done a little later in the

day

> > so that the T would fall a little bit below normal (hoping this

> would

> > prompt the endo to help me out). The results are as follows:

> >

> > Total Serum Testosterone: 388 (400-1080) ng/dL

> > SHBG: 18 (13-71) nmol/L

> > Albumin: 4.4 (3.3-4.8) g/dL

> > Free Testosterone: 95.0 (50-210) pg/mL

> > Free Testosterone %: 2.4 (1.6-2.9)

> > Bioavailable Testosterone: 259.3 (130.5-681.7) ng/dL

> > Estradiol: 28 (<=77) pg/mL

> > HCG, Beta Quantitative: <2 (<5) mIU/mL

> >

> > So, now I am waiting for my endo or doc to call me next week

> > regarding my results. I asked my endo abt the Clomiphene

> stimulation

> > test and he said it wasn't necessary because my LH and FSH were

> > normal. He said that if my lab results came out low for T, then

he

> > could give me a low dose of TRT. But I have been told before that

a

> > low dose would make things worse since it would shut of natural T

> > production. I asked the endo and he said it would just slow

natural

> > production down and not shut it off. One of my concerns is that

it

> > would shut off sperm production. He says that it would just slow

it

> > down a little bit, but not shut it off. If you did go on TRT and

> then

> > stopped, would natural T production come back? Anyone have any

> > feedback for me?

> >

> > Also, is hypogonadism diagnosis/treatment something generally

> covered

> > by insurance? My insurance company is supposed to be good, but

they

> > have been very anal lately about paying for tests, etc. Any

helpful

> > tips on dealing with them?

> >

> > Thanks!

> >

[Guest guest]

On Sun, 7 Mar 2004 01:01:28 -0800 (PST), you wrote:

>As far as the sperm count, I had it checked twice. The odd thing is that the

first time it came out very low at like 36.6 million. Then last time it came out

pretty high at like 168 million. I think the low time can be attributed to

frequent hot tub use and taking Septra. So now it seems confusing that I would

have a high sperm count, but low T levels.

>

>Sounds like I need to stay away from any form of TRT for now since my wife and

I do want children. Do you know if there are any alternatives? I do remember a

few years ago I took some androstenediol for weight lifting. I noticed I felt

more alive. Do you think it would help to take that, or would it cause the same

problems as TRT?

Could it be increasing estradiol is muting the T response that would

lower the sperm count?

[Guest guest]

Ginny,

I know that a lot of doctors are doing different dosing schedules,

due to condition, how much of a dose ect. I'm only taking 50Mg a

week, divided into 2 injections a week. (25mg) I have had a

wonderful experience with the Enbrel, started it in Jan. at that

time all my labs were abnormal for months though the sulfasalizine

may have been causing bad effects but it was just inflammation

everywhere. I saw the rheumy about a week and a half ago and she

called me estatic that my labs were all back to normal levels. Hip,

Hip Horay. I hope you get to feeling better.

Keli

> Hi Group,

>

> Well alot has happened since i last wrote. April was a blur...the

> last time I wrote I was in the midst of a very severe flare of

> P..over 80% coverage and numerous skin infections..well on April

16 I

> had to be helped by 4 people to get in the car to get to my

GP...when

> he walked in the room I burst out crying and told him I could not

> take this another day and i was ready for the serious meds...so he

> started me on MTX..and enbrel..so I started the MTX the following

> monday...that Friday I was rushed to the hospital with serious leg

> pain...it was a blood clot...so bed rest and numerous blood

thinners

> for 4 weeks...blood work twice a week, etc...anyway I continued

the

> MTX but waited on the enbrel...anyway...my leg is better

now...still

> on comudin...the blood thinner...BUT..and this is exciting...after

2

> doses of the MTX my rash started to just disappear...now after my

> fourth dose...my arms are completely cleared...my legs have only a

> couple of patches..m y scalp is cleared..the rash in the folds is

> much better but more stubborn..but I swear I would do a commercial

> for this drug...i just got my first dose of enbrel this week...but

a

> question..the nurse said I have to space the doses over two

> days...for example...she gave me one dose on thursday and told me

to

> give myself the other on monday...is this correct?? I thought it

was

> done on the same day...anyway..just wanted to tell everyone the

good

> news...I was scared 4 years ago to try MTX..but if I had I could

have

> avoided alot of pain and agony...the only side effect so far is a

> mild nauseated feeling but that is nothing...thank you for all

your

> support and kind words...

>

> gentle hugs to all

> ginny

>

> [Editor's Note: Hi, Ginny; Glad to hear the MTX is serving you so

well. I'm with you: I've been a big fan since 1981, when I started

on MTX, and experienced the same results as did you. You couldn't

separate me from my MTX with the Jaws of Life.

> On your dosage dates: Thursday to Monday is 4 days (12 Noon Thu to

12 Noon Mon is 96 hours, or 4 days. Am I missing something? Did the

nurse mis-speak? There are two (oral) dosage regimens: Single-Dose

(just what it says) and Divided Dose (week's total divided by 3,

administered at 12 hour intervals); however, the current literature

stops there, except for special-situation and injection dosing.

> D.]

[Guest guest]

Ginny,

When I tried Enbrel I gave the shots on Thur. and Mon. The people

at Enliven are super and helpful if you have trouble. They can talk

you through any problmes or questions you might have. They can

also tell you about giving both shots the same day. The literature

with the Enbrel should go over that as well.

Good luck

Debbie

-- In , " ginnyc1948 "

<ginny049@a...> wrote:

> Hi Group,

>

> Well alot has happened since i last wrote. April was a blur...the

> last time I wrote I was in the midst of a very severe flare of

> P..over 80% coverage and numerous skin infections..well on April

16 I

> had to be helped by 4 people to get in the car to get to my

GP...when

> he walked in the room I burst out crying and told him I could not

> take this another day and i was ready for the serious meds...so he

> started me on MTX..and enbrel..so I started the MTX the following

> monday...that Friday I was rushed to the hospital with serious leg

> pain...it was a blood clot...so bed rest and numerous blood

thinners

> for 4 weeks...blood work twice a week, etc...anyway I continued

the

> MTX but waited on the enbrel...anyway...my leg is better

now...still

> on comudin...the blood thinner...BUT..and this is exciting...after

2

> doses of the MTX my rash started to just disappear...now after my

> fourth dose...my arms are completely cleared...my legs have only a

> couple of patches..m y scalp is cleared..the rash in the folds is

> much better but more stubborn..but I swear I would do a commercial

> for this drug...i just got my first dose of enbrel this week...but

a

> question..the nurse said I have to space the doses over two

> days...for example...she gave me one dose on thursday and told me

to

> give myself the other on monday...is this correct?? I thought it

was

> done on the same day...anyway..just wanted to tell everyone the

good

> news...I was scared 4 years ago to try MTX..but if I had I could

have

> avoided alot of pain and agony...the only side effect so far is a

> mild nauseated feeling but that is nothing...thank you for all

your

> support and kind words...

>

> gentle hugs to all

> ginny

>

> [Editor's Note: Hi, Ginny; Glad to hear the MTX is serving you so

well. I'm with you: I've been a big fan since 1981, when I started

on MTX, and experienced the same results as did you. You couldn't

separate me from my MTX with the Jaws of Life.

> On your dosage dates: Thursday to Monday is 4 days (12 Noon Thu to

12 Noon Mon is 96 hours, or 4 days. Am I missing something? Did the

nurse mis-speak? There are two (oral) dosage regimens: Single-Dose

(just what it says) and Divided Dose (week's total divided by 3,

administered at 12 hour intervals); however, the current literature

stops there, except for special-situation and injection dosing.

> D.]

[Guest guest]

Ginny, I am so happy for you that the meds are working so well. I take my

Enbrel on Sunday morning and again onWednesday evening. I do it that way

because my two most stressful and difficult days at work are Tuesday &

Thursday and the Enbrel is working best if I do it that way. I have seen

people post about taking their Enbrel all at once but I was told to do it

twice a week. I played around with the days until I found what worked best

for me. By Saturday afternoon (and sometimes Friday evening) I feel like

the Wednesday dose has worn off but I try to rest as much as I can on

Saturday and I save the Enbrel until Sunday so it works well for me on

Tuesday. Clear as mud. Sorry, it is complicated. You will find what works

best for you. MTX is a good med and I hope you have the same luck with it

that has had. I found the brain confusion just too difficult to deal

with but kept taking it because it worked so well. I finally had to quit

because it lost it's effectiveness and the dose was getting too high.

Again, I'm happy for you. Cheri :-))

....but a

> question..the nurse said I have to space the doses over two

> days...for example...she gave me one dose on thursday and told me to

> give myself the other on monday...is this correct?? I thought it was

> done on the same day...anyway..just wanted to tell everyone the good

> news...I was scared 4 years ago to try MTX..but if I had I could have

> avoided alot of pain and agony...the only side effect so far is a

> mild nauseated feeling but that is nothing...thank you for all your

> support and kind words...

>

> gentle hugs to all

> ginny

>

>

[Guest guest]

Good to hear from you, Lynne. It sounds like you have managed over these difficult "bureaucratic" problems. I know I had a problem after I had started treatment too. We had switched our insurance, still the same insurance company, but they added a company to manage prescription insurance. Our coverage was supposed to be the same, but I went to get my biweekly supply and they refused me. It seems they required additional information. I had to call the pharmacy, then the company, then my doctor, repeat. I was about to interrupt the treatment. My pharmacist was good enough to give me the prescription before the approval came through, so I wouldn't have the interruption. It really upset me, I know the idea is to overpower the virus into submission by pounding it with interferon, and interruption at that point in time could have made the difference between success and failure all over a little paperwork. I get mad all over again just thinking about it. Anyway, it

sounds like you are about to join the ranks of dragonslayers, and that's the good news!!! -dz-Lynne Dunham <Lynne@...> wrote:

Hi all,

I know it has been along time but just to update all on what has been happening.

A couple of weeks ago, Blue Cross denied my claim with one month left to go. Seems the Hep Doc put the referral in for six months in December knowing I was starting in January after the holidays. It was a good things he put it in December for Blue Cross denied it then also and had to wait weeks for the OK. My Hep doctor got fired, never liked him anyway. The practice set me up with a different doctor and we got everything with BC straighten out. Friday I met her for the first time and really liked her, it is the first time I was given a check up including blood pressure since I started. Buttttt is was her last day in the practice. Go figure.

My primary is now back from vacation and I saw her and she referred me to a new specialist. I plan on finishing treatment with this specialist team, but will change after that. I know I probably should have change earlier, but the treatment make my legs cramp so and the fatigue kills me so I really couldn't see driving an hour away while on treatment. If I have to travel anyplace far I find someone to drive me and that is hard at times.

So glad this treatment is almost over and get my life back. 3 more shots to go and taking it one day at a time.

Missed you all, take care Lynne

[Guest guest]

I know I even threaten Blue Cross and told them that, you know I can't miss a treatment and if you want to repay for me to restart it all again that is up to you. But I think you guys are trying to save money not spend more. Within 24 hours it was solved. But I kept hounding them.

Yes sure we, I am about to become a dragon slayer.

-----Original Message-----From: Dave [mailto:dhz920@...]Sent: Monday, June 28, 2004 8:22 AM Subject: Re: [ ] Update

Good to hear from you, Lynne. It sounds like you have managed over these difficult "bureaucratic" problems. I know I had a problem after I had started treatment too. We had switched our insurance, still the same insurance company, but they added a company to manage prescription insurance. Our coverage was supposed to be the same, but I went to get my biweekly supply and they refused me. It seems they required additional information. I had to call the pharmacy, then the company, then my doctor, repeat. I was about to interrupt the treatment. My pharmacist was good enough to give me the prescription before the approval came through, so I wouldn't have the interruption. It really upset me, I know the idea is to overpower the virus into submission by pounding it with interferon, and interruption at that point in time could have made the difference between success and failure all over a little paperwork. I get mad all over again just thinking about it. Anyway, it sounds like you are about to join the ranks of dragonslayers, and that's the good news!!! -dz-Lynne Dunham <Lynne@...> wrote:

Hi all,

I know it has been along time but just to update all on what has been happening.

A couple of weeks ago, Blue Cross denied my claim with one month left to go. Seems the Hep Doc put the referral in for six months in December knowing I was starting in January after the holidays. It was a good things he put it in December for Blue Cross denied it then also and had to wait weeks for the OK. My Hep doctor got fired, never liked him anyway. The practice set me up with a different doctor and we got everything with BC straighten out. Friday I met her for the first time and really liked her, it is the first time I was given a check up including blood pressure since I started. Buttttt is was her last day in the practice. Go figure.

My primary is now back from vacation and I saw her and she referred me to a new specialist. I plan on finishing treatment with this specialist team, but will change after that. I know I probably should have change earlier, but the treatment make my legs cramp so and the fatigue kills me so I really couldn't see driving an hour away while on treatment. If I have to travel anyplace far I find someone to drive me and that is hard at times.

So glad this treatment is almost over and get my life back. 3 more shots to go and taking it one day at a time.

Missed you all, take care Lynne

[Guest guest]

On Fri, 6 Aug 2004 04:26:13 -0700 (PDT), you wrote:

>i dont really have anything to up date but here it goes: i have been on 25

pellets for almost 2 months now. there have been no changes i can notice. still

barely crawl out of bed in the morning with low energy and no erections. at the

end of this month im going for blood work to see whats happening. on a side note

i have noticed some bloating . also a constant tingle and numbing in my

hands.that could be a pinched nverve,im not sure.

I had the same thing but on androgel. I suggest bloating is from E2.

See if you can get it checked. I also had the tingling - it can be

from a high hematocrit. The blood thickens. I believe the bloating

compounds the circulatory issues of high hematocrit.

- - - -

Just another albino black sheep

[Guest guest]

get the braces for you hands and use them for a few weeks and at night it

helps.

Phil

STEVEN CANNON <scottc_95@...> wrote:

i had the numbing and tingling before trt. when i did lawn care and was cutting

alot of bushes. the doc said it was something like carrpel syndrome but wasnt

specific,he told me to find a new line of work.i did,but its back.

retrogrouch@... wrote:On Fri, 6 Aug 2004 04:26:13 -0700 (PDT), you

wrote:

>i dont really have anything to up date but here it goes: i have been on 25

pellets for almost 2 months now. there have been no changes i can notice. still

barely crawl out of bed in the morning with low energy and no erections. at the

end of this month im going for blood work to see whats happening. on a side note

i have noticed some bloating . also a constant tingle and numbing in my

hands.that could be a pinched nverve,im not sure.

I had the same thing but on androgel. I suggest bloating is from E2.

See if you can get it checked. I also had the tingling - it can be

from a high hematocrit. The blood thickens. I believe the bloating

compounds the circulatory issues of high hematocrit.

- - - -

Just another albino black sheep

[Guest guest]

,

I had tons of tingling when I had too much iron on my body from

Hemochromatosis. If you haven't ruled out this disease, then get a ferritin test

to do so.

In a message dated 8/6/2004 4:37:22 PM Eastern Daylight Time,

bruceharvey@... writes:

,

I've been through the anxiety worrying about some terrible, undiagnosed

mystery disease. I think that's normal for someone with a persistant illness

that's not responding to treatment. It will pass.

There are lots of things that can cause tingling and numbness. I've had it

several times, and it may be related to T & fatigue. Unless there's pain or

loss

of function, it's merely an intermittent nuisance.

If I understand correctly, you're planning to have blood drawn at (not

before)

your next uro appointment, at the end of the month. If so, I have some

concerns: Will the uro know what tests to run? Do you want to linger in

anxious uncertainty when a test might tell you what's going on? If something

can be changed that will make you feel better, why not sooner than later?

Wouldn't it be better to have test results in hand for your uro appointment?

Here's a suggestion: contact Dr. Gambrel and have him fax/mail you the lab

work order, with the tests he feels are important. When you go to the lab for

the test, direct them to send a copy of the report to your uro.

Best,

Bruce

[Guest guest]

Dr. Gambrel will order blood tests for people who aren't really his

patients?

That would be cool...I might actually get blue cross to pay for the lab work

rather than footing out the hundreds of dollars I have been to get the tests

my doc won't order (he doesn't no any better I fear).

> Re: update

>

<snip>

>

> Here's a suggestion: contact Dr. Gambrel and have him

> fax/mail you the lab work order, with the tests he feels are

> important. When you go to the lab for the test, direct them

> to send a copy of the report to your uro.

>

> Best,

> Bruce

>

[Guest guest]

If you have BCBS PPO it shouldn't be hard to find a Dr. to order the tests

you need and to have insurance pay for them.

In a message dated 8/7/2004 11:33:13 AM Eastern Daylight Time,

daultman@... writes:

Dr. Gambrel will order blood tests for people who aren't really his

patients?

That would be cool...I might actually get blue cross to pay for the lab work

rather than footing out the hundreds of dollars I have been to get the tests

my doc won't order (he doesn't no any better I fear).