Thanks

[Guest guest]

Terry,

On Aug 19th I have a local doctor's appointment. I have another appointment with Dr. Eugene Schiff at University of Miami.

Stupid question? Not to waste time.....if I start the therapy with one doctor can I change the doctor two months later? Dr. Schiff is very well known, but I couldn't get an earlier appointment. Like you said, better to start earlier than later.

I am not looking forward to this. Just thinking about this gives me nightmares. And I am a real fighting type person.

Thanks again for your help.

Maxine Begonja

>From: Terry Long

>Reply- > >Subject: Re: [ ] Thanks >Date: Thu, 18 Jul 2002 23:28:46 -0700 (PDT) > > > Maxine if it was me, I would start the Peg now. See if that works, when the new stuff come's out. Later you could talk with your Doctor about switching. My thoughts are anything that might beet this dragon I will do it. > Terry > mbeg20202 wrote: Thanks Sharon, & Terry for responding to me with your kind >words. > >Today I have a headache from trying to absorb all this. I just >found out that I have Stage 3 Fibrosis which was diagnosed 19 months >ago and no one ever told me. > >Does anyone know how long it takes to get from Stage 3 to Stage 4 >which I believe is cirroses (can't spell this and never want to >learn). > >I have a new doctor's appt in August (someone I hope with a bedside >manner) - so far the last two had absolutely no emotions. Then I >have an appointment with the head of the University of Miami and >then over to the Shands Hospital (affiliated with University of >Floria). > >Since my timeframes will be later this year I was wondering if it >would be worth waiting for the new Pegasys or taking the present >Pegalated therapy on the market now? Has anyone heard anything >about the new therapy, Pegasys? > >Thanks again for all of your help. > >Maxine Begonja > > >

[Guest guest]

Maxine.......The director of the Liver Center at Beth Israel Hospital has told me, there is no difference between Pegasys and Peg-Intron.. just different packaging, different player getting there hand in the drug cookie jar. I relasped on on Peg-Intron after 48 weeks of treatment, and thats what I wanted to do was try Pegasys. Interferon alpha 2b with Rib is used in both products. He recommend that I try a different interferon...Gamma 1b. Mitch

Re: [ ] Thanks >Date: Thu, 18 Jul 2002 23:28:46 -0700 (PDT) > > > Maxine if it was me, I would start the Peg now. See if that works, when the new stuff come's out. Later you could talk with your Doctor about switching. My thoughts are anything that might beet this dragon I will do it. > Terry > mbeg20202 wrote: Thanks Sharon, & Terry for responding to me with your kind >words. > >Today I have a headache from trying to absorb all this. I just >found out that I have Stage 3 Fibrosis which was diagnosed 19 months >ago and no one ever told me. > >Does anyone know how long it takes to get from Stage 3 to Stage 4 >which I believe is cirroses (can't spell this and never want to >learn). > >I have a new doctor's appt in August (someone I hope with a bedside >manner) - so far the last two had absolutely no emotions. Then I >have an appointment with the head of the University of Miami and >then over to the Shands Hospital (affiliated with University of >Floria). > >Since my timeframes will be later this year I was wondering if it >would be worth waiting for the new Pegasys or taking the present >Pegalated therapy on the market now? Has anyone heard anything >about the new therapy, Pegasys? > >Thanks again for all of your help. > >Maxine Begonja > > >

[Guest guest]

Maxine, I'm not going kid you. The side afects of this is rough. But it is livable. My Doctor told ms at the start of treatment that the side afects were rough. Exsplaining that it took a strong drug to beat off this dragon and drugs that strong also carried strong side afects. I decidded that I was going beat this & that if I had to put part of my life on hold for the duration of treatment. I would gladly do it. It beat's living or dieing with this dragon. It has been a rough 6 & 1/2 month's, but I am living with it. I have only missed work 4 days so far & left early another 5 or 6 times. I haven't done much around the house "letting things be on hold & paying to having it done" & I have not gone out "church & things" as much as I normaly do. I have missed more church this year then I did in the last 8 years combind. But if I beat off the dragon it will be worh it.

Terry

MAXINE BEGONJA <bestweb20@...> wrote:

Terry,

On Aug 19th I have a local doctor's appointment. I have another appointment with Dr. Eugene Schiff at University of Miami.

Stupid question? Not to waste time.....if I start the therapy with one doctor can I change the doctor two months later? Dr. Schiff is very well known, but I couldn't get an earlier appointment. Like you said, better to start earlier than later.

I am not looking forward to this. Just thinking about this gives me nightmares. And I am a real fighting type person.

Thanks again for your help.

Maxine Begonja

>From: Terry Long

>Reply- > >Subject: Re: [ ] Thanks >Date: Thu, 18 Jul 2002 23:28:46 -0700 (PDT) > > > Maxine if it was me, I would start the Peg now. See if that works, when the new stuff come's out. Later you could talk with your Doctor about switching. My thoughts are anything that might beet this dragon I will do it. > Terry > mbeg20202 wrote: Thanks Sharon, & Terry for responding to me with your kind >words. > >Today I have a headache from trying to absorb all this. I just >found out that I have Stage 3 Fibrosis which was diagnosed 19 months >ago and no one ever told me. > >Does anyone know how long it takes to get from Stage 3 to Stage 4 >which I believe is cirroses (can't spell this and never want to >learn). > >I have a new doctor's appt in August (someone I hope with a bedside >manner) - so far the last two had absolutely no emotions. Then I >have an appointment with the head of the University of Miami and >then over to the Shands Hospital (affiliated with University of >Floria). > >Since my timeframes will be later this year I was wondering if it >would be worth waiting for the new Pegasys or taking the present >Pegalated therapy on the market now? Has anyone heard anything >about the new therapy, Pegasys? > >Thanks again for all of your help. > >Maxine Begonja > > >

[Guest guest]

Hi, Maxine,

As Terry said, this is not easy but it is doable. I don't know what your family or social situation is, but try to enlist your friends and loved ones as much as possible. You just won't be able to do as much while you're on treatment. You'll feel weak and tired more or less all the time (it seems everybody does), and that can be frustrating. And yet, we do what we have to do, right? At least there are drugs to treat this; a few years ago there wasn't anything!

About choosing a doctor: I haven't heard of Dr. Schiff, as I don't follow hep C treatment news. But I am fortunate to have a wonderful, caring gastroenterologist who's worked with hep C patients for some time. Busy as he is, he goes out of way to make himself available as much as possible, by phone or email if I can't get in to see him. Having a physician who really cares is to me more important that all the credentials in the world. Just my two cents worth.

I found a good hep C support group at the local hospital, but my work schedule is such that I can't get to the bimonthly meetings. Maybe you could find something like this in your area. And obviously, you found this group on the 'net.

Best wishes,

Re: [ ] Thanks >Date: Thu, 18 Jul 2002 23:28:46 -0700 (PDT) > > > Maxine if it was me, I would start the Peg now. See if that works, when the new stuff come's out. Later you could talk with your Doctor about switching. My thoughts are anything that might beet this dragon I will do it. > Terry > mbeg20202 wrote: Thanks Sharon, & Terry for responding to me with your kind >words. > >Today I have a headache from trying to absorb all this. I just >found out that I have Stage 3 Fibrosis which was diagnosed 19 months >ago and no one ever told me. > >Does anyone know how long it takes to get from Stage 3 to Stage 4 >which I believe is cirroses (can't spell this and never want to >learn). > >I have a new doctor's appt in August (someone I hope with a bedside >manner) - so far the last two had absolutely no emotions. Then I >have an appointment with the head of the University of Miami and >then over to the Shands Hospital (affiliated with University of >Floria). > >Since my timeframes will be later this year I was wondering if it >would be worth waiting for the new Pegasys or taking the present >Pegalated therapy on the market now? Has anyone heard anything >about the new therapy, Pegasys? > >Thanks again for all of your help. > >Maxine Begonja > > >

[Guest guest]

I was worked up by my uro, Larry Lipshultz, M.D. Prof of Urology Baylor

Medical Schl - Dept of Urology.

This hand out that I was given while PA was working me up

http://www.infertility-male.com/erectdys/injxn1.htm

states that if your erections last longer than 1 1/2 hours, you may take

Sudafed, 60 mg.

On hard copy PA gave me...priapism is defined as 4+ hours erection. Sudafed

up to 120 mg can be taken. Before I soloed at home with my Trimix Rx I

purchased 60 mg Sudafed caplets. Some uros when working their clients up

for Trimix injection of their dicks will Rx caffeine pills....caffeine is a

vaso-constrictor and diminishes blood flow to dick. I've injected my dick

~24 times with my Trimix Rx and achieve a nonbendable erection within five

mins....this persists up to two hours of playing and begins flaccidity after

orgasm/ejaculation.

Those nocturnal erections (NEs) occur in most men, they are completely

involuntary and are generally nonsexual....

http://webmd.lycos.com/content/article/1685.50264

http://webmd.lycos.com/content/article/1680.50126

I would consult with a urologist...most men's NEs or piss hardons are not

painful, but there might be some condition(s) for the opposite. Most

likely you are not the only man to experience this.

Just my experiences...

Good luck,

Keep us posted as goes it how,

OR eon

[Guest guest]

,

You could ask your PCP for Ultram, it is a non-narcotic pain reliever and

works fairly well and can be taken with NSAID such as Vioxx. Good Luck!

, NC

[Guest guest]

Prednisone. It's the best SHORT TERM, fast acting solution that I know of,

and it's fairly common- so hopefully your PCP won't have too much concern

prescribing a low dose (5 mg or so). Also- try to get your PCP office to

schedule the rheumy visit. It can really speed things up.

Congrats and GOOD LUCK!

Kirsten

>From: " celticangyl <blueyedangyl@...> " <blueyedangyl@...>

>Reply-

>

>Subject: [ ] Thanks

>Date: Mon, 16 Dec 2002 17:46:35 -0000

>

[Guest guest]

The first thing that I would think that you need to deal with is the insomnia. Unfortunately lack of sleep effects our bodies and will cause the pain to be worse. My doctor has given me Ambien to help me sleep. You might ask for this. It is non-narcotic and you can get up without feeling drugged. The only thing is that you need to be ready for bed when you take it because it will hit you suddenly and has almost an intoxicating effect. What has worked best for me is a muscle relaxer called Zanaflex. I can take 4mg and sleep really good and the pain is not as bad when I get up in the mornings.

Now for the pain, I cannot help on the migraines, as I do not have them. I worked as an office manager for my doctor for six years and she prescribed several types of medication. My preference for pain medication is Ultram. All of us in this group have many years of pain ahead of us. Right now the Ultram works for me and I am trying to stay away from narcotics because I am afraid if I take them now, they will not help later when the pain gets worse. I have taken Darvocet and I believe the Ultram helps me much more.

Now, the thing that I read from your writing is that the pain, illness and insomnia has taken its toll and has caused some major depression. I know that all of us with liver disease have to watch taking these types of medication. However, my GI is a firm believer that sometimes we are better off taking an antidepressant and taking our chances. Depression is a terrible illness on its own and most of us who suffer from chronic pain will at some point become depressed. I managed all of my illnesses okay until I had to have by-pass surgery and this was kind of the last straw. Suddenly, I wanted to cry all of the time and I felt like there was a dark cloud around me all the time. The best thing for me was that my GP put me on Zoloft. Within a few days I started feeling better.

My GI has agreed that it is best for me to stay on the medication. Have you taken an antidepressant? The insomnia is a good sign of depression and chronic pain is a major cause of depression. If you are taking an antipressant, you may need to change to a different kind.

I apologize for the length of this reply, but it seemed I could see you were in desperate need of help. Be honest with your GP. Hopefully he or she is an understanding doctor that you can open up to.

Good luck and let us know how your visit goes and if you get some help.

Carolyn Delplane

[Guest guest]

I have had a headache for so long, I haven't slept in months

> and the joint pain has become unbearable. I just started yelling and

*****

Carilyn, I understand the pain you are having. When the GI took my

prednisone down to 3 1/2, I thought I would surely die. I could not move.

My body ached. I could not move my joints. I KNEW I was going to die!

So, then, the Rheumatologist increased it BACK to 5 mg. Now, I have

successfully trimmed it to 4 mg, and am currently trying to drop to 3. The

GI said that she was for anything to get me down and hopefully OFF the

prednisone, but she was doubtful that it was going to happen. It just

breaks my heart to know that I didn't WANT to go on it to begin with! But,

I am here, and am going to work the program to figure out what I can and

cannot tolerate. She is hoping that I can get to 2.5 mg soon! I will do my

best to get there

As for the headaches...sometimes the pain gets so bad that I would do

anything to get rid of them. So, my husband takes me to ER and I get a shot

and go home and get better. The Neurologist doesn't want to put me on stuff

to prevent headaches, but rather, wants me to keep up with Imitrex or Maxalt

to see if we can just control them with these meds. Hopefully, this will

continue to work.

As for the joint pain...has the doctor looked at you for spinal stenosis?

One batch of pain that I encountered was so intense that I just lay on the

floor in the Living Room and rolled over and over, until I could not stand

the pain anymore. I drove myself to ER...they gave me an injection and I

had some peace. However, later that day, the Orthopedic doctors realized

the pain was intense and got me into physical therapy. That was the BEST

thing that happened. They showed me how to control the pain with exercises,

and when I am totally consistant with the exercises, the pain in my neck and

shoulders is minimal! It was through Physical Therapy, too, that I was able

to get to the gym and lost those 40 pounds. Gained it all back on the

prednisone. Now, I have been able to lose 6 of them again and that is

wonderful! Things eventually will get better. Many here are so supportive

with suggesting ways to help. This is a good place to get info!

Debby

[Guest guest]

Hi Sue, Jeannie and all,

I feel for all of you, and I can sure relate...I am not the one with Lyme, my

16-year-old son is. So, we get double whammy slams from family in many

cases...they hint that maybe I am " smothering " him too much and maybe he

needs to " toughen up " and that sort of stuff. I now just keep my distance

from anyone who has ever spoken in such a way, because it only drags me down.

I don't know of any 16-year-old boy who once was vibrant, healthy and

involved happily in school and sports who would choose to be so sick that he

can barely answer simple questions some days. He is determined to get better,

and we continue to spend money (another component of this that critical

family doesn't even seem to recognize!) to help him get his life back.

I didn't write this to sound negative, but to convince you that you have to

stay strong, choose your battles and go on. I'm speaking from LOTS of

experience, as my son was bit by a tick in the summer of 1998 and we've had

to fight every step of the way.

Be strong!

Judie

[Guest guest]

Great news, Merribeth!!!

getbent411 <getbent411@...> wrote:Hi, I wanted to thank everyone who

crossed fingers (and toes )

and wished my daughter well. The doctor said everything looked good

and that they must have seen an " artifact " the first time. Thank

God!! I will gladly suffer PA alone in this house, rather than have

of one of my kids suffer this too. Thanks again!

Take care,

Merribeth

[Guest guest]

Thank you Carole and Joan for your kind thoughts. Thanks again to everyone.

the WV hillbilly

[Guest guest]

In a message dated 7/22/03 9:36:34 PM Eastern Daylight Time,

embroidery4@... writes:

> BlankI know I posted many questions pertaining to getting SSI for DS.

> THANK YOU ALL. We have been successful... it would not be so without all

your

> help and input assisting me choosing my words carefully

Great news! And, you're more than welcome!

Connie

[Guest guest]

We are starting the process with Lexi. I just received the paperwork in the mail

yesterday and the interview is on the 4th. I hope we are as successful as you

were. I am so happy for you!!

MISSY

SAHM to some special kids!!!

Excuse Me While I Go

Raise Tomorrow's Future.

( ) Thanks

BlankI know I posted many questions pertaining to getting SSI for DS. THANK

YOU ALL. We have been successful... it would not be so without all your help

and input assisting me choosing my words carefully.

God bless you all,

[Guest guest]

Esther,

Most insurance companies will pay for limited nail trims if you are diabetic. I don't remember your medical situation but if you are a diabetic look into it. They very probably will be some benefits.

[Guest guest]

You are so welcome, Marti. That's what we are all here for - and the

silver lining in the adversity we face with this disease is the

incredible support system in place with this board. ( -

thank you so much for founding this board...). A moment ago I was

reading another response to the " Embarrassing PS problem " ... What

sprung to my mind was that although it took great courage for the

initial poster to write about his dilemma, many people responded with

helpful solutions.... it brings to home that none of us are alone -

we can all reach out and discuss things here which would be unheard

of in normal life circles. There is no judgment - just unconditional

support.

Thank you all,

[Guest guest]

In a message dated 8/26/2003 2:18:48 PM Eastern Daylight Time,

michaelszczygiel@... writes:

> can't wait to go onto a drug that might make me Ill ???? Lol ) I

> wouldn't have felt that way If I hadn't got lots of opinion and experiences

> from you guys , so again I thank those who have let me see the Light !

Just took my second dose of mtx tonight. My side effects are really not bad.

I am taking 4 pills. I felt a little fatigue on the 3rd day and I had a bad

taste in my mouth for 3 days after the pill last week. It went away on the

4th day. I had some quesiness for the 3 days but it was not that terrible. I

don't know if anyone else gets this but my stomach got very bloated and gasey.

I don't know if that was a side effect. The worst think was going to a

barbque and watching everyone drinking and I couldn't. If the mtx helps takes

some of this pain away then it is all worth it. I was scared silly to start

this

med and it is not that bad. Go fo it!!!

Janet

[Guest guest]

Hi Janet,

I am new to this group, I was recently diagnosed with PA (2 weeks

ago) and I'm on MTX as well. I took my second dose yesterday (6

pills = 15 mg) and so far I'm very bloated, have diarrhea and feel

very tired most of the time. Other than that, no major side

effects. Unfortunately, I don't feel any pain relief yet, my joints

ache a lot and I have a hard time sleeping at night.

I was also very scared when I first started taking it, but so far it

hasn't been that bad.

> In a message dated 8/26/2003 2:18:48 PM Eastern Daylight Time,

> michaelszczygiel@d... writes:

>

> > can't wait to go onto a drug that might make me Ill ???? Lol ) I

> > wouldn't have felt that way If I hadn't got lots of opinion and

experiences

> > from you guys , so again I thank those who have let me see the

Light !

>

> Just took my second dose of mtx tonight. My side effects are

really not bad.

> I am taking 4 pills. I felt a little fatigue on the 3rd day and I

had a bad

> taste in my mouth for 3 days after the pill last week. It went

away on the

> 4th day. I had some quesiness for the 3 days but it was not that

terrible. I

> don't know if anyone else gets this but my stomach got very bloated

and gasey.

> I don't know if that was a side effect. The worst think was going

to a

> barbque and watching everyone drinking and I couldn't. If the mtx

helps takes

> some of this pain away then it is all worth it. I was scared silly

to start this

> med and it is not that bad. Go fo it!!!

> Janet

>

>

>

[Guest guest]

is our man for those problems... He's been busy and we have only heard from him occasionally lately. I think there may be a lag between signing up for them and getting them. I know I have gone on digest while on vacation and it took a while before the individual emails started coming again. -dz-lynne@... wrote:

Thanks to all with your answers. I am happy I joined this list, the feeling of lonliness is the worstpart so far of this disease. On another note, I signed up for individual emails and haven't received any. I have to go onlineto read all mail. What am I doing wrong?

[Guest guest]

Aw shucks its nothin'.. Its nice to have a place to come where people understand where I am coming from. Because they have either delt with it themselves or they have watched their children deal with it. I live my life day to day and try to enjoy it to the utmost.. sometimes it works sometimes it doesnt..But we are given one life so I try to make the most of it. A lot of the time I just ramble..but it definitely is an awesome feeling when someone tells me it brought them a little laughter, or joy, maybe even inspired them, or gives them some sort of comfort..Truly I want to thank all of you because I just feel so lucky to have a place where I can talk about the up's and down's of JRA and there are people there to listen.

(poly jra and spondy 19)

[Guest guest]

you can email me directly at cbenoir@...

I live in the central part of the state - about 45 min away from the

Stowe car show. The show is in August. I am partial to the colors

in the Fall.

I go tomorrow to find out what my treatment will be.

Will the doctor prescribe diabetic testing supplies so that you can

monitor it yourself and have the insurance companies pay for the

supplies???

How long does it take until the exhaustion goes away?????

Cora

> Thanks Cora,

> I would love to keep in touch. One of my husband's

> dreams is to go to Vermont when they have that Classic

> Car show near Stowe. Maybe this summer will be it.

> We have stayed in several places in Vermont, but I

> always think the way to truly get to know a place is

> to see it with someone who knows it. Anyway, as one

> newly diagnosed to another, I just had an appt. with

> my eye doctor today and when she did the glaucoma

> pressure test she said that it was a lot higher than

> it had been and definitely not normal. She thinks it

> iis because of the pred. Anyone else out there have

> the same problem? So it might be worth having your

> eyes tested. I have been on the pred. since

> Christmas. She wants to test again in May after I

> have been weaned to 5 mg. a day. Also, my blood

> results show higher than normal blood sugar which is

> also a side affect of pred. So, make sure that

> everything is being monitored! Take care and let me

> know when spring arrives in Vermont? What town do you

> work in? In all our meanders through the state I

> think we have almost covered them all!

> Kathy

>

>

>

_____________________________________________________________________

_

> Post your free ad now! http://personals..ca

[Guest guest]

Thanks for the prayers. He needs to get back online with everyone.

Although I am not experiencing treatment myself, I will be here if

you need me Chris. You're right about everyone being wonderful. I

was so scared when the doc told us about Shane's Hep C, but once I

read everyone's postings and saw and experienced all the support

here I felt much better. My best to you.

> Hi Everyone,

> I just wanted to send Shane my prayers, it sounds like your doing

> pretty well so far. To all of you who have gone through treatment

> and are going through treatment now, I really admire your courage

and

> strength. I keep hearing how bad the first shot is and to know

that

> all of you were brave enough to do the 2nd shot is really amazing

and

> a great inspiration to me. As I am getting ready to start tx in a

> few weeks, I read your emails and know that I can also do this.

> Everyone in this group is wonderful and I just want to say all the

> advice and support is greatly appreciated.

> Thanks and have a great week.

>

> Chris

[Guest guest]

some information on cortef?????

~k

[ ] Thanks

I appreciate your help and advice. I`ve been looking at the things

you have posted. I learned on my thyroid group that obsessive

compulsive behavior is a symptom of adrenal fatigue and i`m going to

try him on cortef. Adrenal fatigue goes along with hypothyroidism.

I`m willing to listen to the advice of your Dr. from New York. I

doubt that i`d be able to go there though. Many people on my group

also say that they had bad digestive problems until they got their

adrenal glands into shape. Thank you again. Tina

[Guest guest]

Karyn as a former pharmaceutical representative -what do you know

about this drug?

Here are a list of side effects of Cortef I found at rxlist

http://www.rxlist.com/cgi/generic/solucort_ad.htm

Some pretty scary side effects by the way are mentioned -and a long

list that covers everything from neurological to musculoskelatal

side effects.

Tina -is this the Cortef you are talking about? If so, which MD

recommended this?

=====

[Guest guest]

I'm hesitant to encourage any parent to use steroid therapy unless a doctor

STRONGLY recommends it as one of the few alternatives.

......call me please.....important.

~Karyn

[ ] Re: Thanks

Karyn as a former pharmaceutical representative -what do you know

about this drug?

Here are a list of side effects of Cortef I found at rxlist

http://www.rxlist.com/cgi/generic/solucort_ad.htm

Some pretty scary side effects by the way are mentioned -and a long

list that covers everything from neurological to musculoskelatal

side effects.

Tina -is this the Cortef you are talking about? If so, which MD

recommended this?

=====