Re: michelle from La trying to get my life back-------

[Guest guest]

, Oh thanks for posting. It feels so good to hear from you. I know

how hard it must be for you to post. I'm so glad that Mayo has gotten you on

the right track, or at least it sounds that way. I have heard nothing but

good about Dr. Luthra.

You are so lucky to have your Dad. What a wonderful man he is. You must be

proud, and he must be so proud of you. Bob.... Happy Father's Day!! WE all

thank you for keeping us updated on . Especially for all of us

worriers. LOL

, are you on the neurontin for the RP? I'm asking because I just

started taking it and they gave it to me for muscle pain. When you feel up

to it, maybe you could tell us why they are upping yours and why you are

taking it.

I'm glad the new med will work quicker and you won't have to wait months to

see if it is working. You are in my thoughts and prayers and I just KNOW

that you are on the right track. Don't give up now. WE are all here for you

and you keep in touch.

Sending lots of hugs and love

[Guest guest]

, Please know that we are all here to listen. I am praying the new

meds will kick in and you will be dancing circles around us.

For you and Sally and T and all the others on Neurontin, did it take you

some getting use to?? Gosh I don't know why I reacted like I did on only

200mg. That is such a baby dose compared to what you are all on. I was

suppose to slowly up it, but I'm afraid I will be a zombie all the time. LOL

Now it sounds like I'm whining. LOL Sorry.

You keep us posted as to how you are. Hope you had a special time with your

Dad today. Give him a hug from me.

hugs

[Guest guest]

-

The doc increased my Neurotin for the pain- my feel mainly they are swollen and red still and it is difficult to walk. Of course it depends in what day it is to what degree of pain I am having. This new dosage is making me very tired, but I really have needed the rest, I don't sleep well overall so I think that it is helping on that end. I am thankful to have my dad- he has been so wonderful to me during this time. I know that he never expected for this to happen to me-I was the one who was going to conquer the world. Now I am having to depend on ithers to do little things. It is very frustrating for me someone so independant and so young. But enough about me-I will be fine as soon as we get this under control. I really hope that it is soon. It has been long 7 months. Thanks for listening-

>From: RCColloran@... >Reply-To: Rpolychondritis >To: Rpolychondritis >Subject: Re: michelle from La trying to get my life back------- >Date: Sun, 16 Jun 2002 07:49:57 EDT > >, Oh thanks for posting. It feels so good to hear from you. I know >how hard it must be for you to post. I'm so glad that Mayo has gotten you on >the right track, or at least it sounds that way. I have heard nothing but >good about Dr. Luthra. > >You are so lucky to have your Dad. What a wonderful man he is. You must be >proud, and he must be so proud of you. Bob.... Happy Father's Day!! WE all >thank you for keeping us updated on . Especially for all of us >worriers. LOL > >, are you on the neurontin for the RP? I'm asking because I just >started taking it and they gave it to me for muscle pain. When you feel up >to it, maybe you could tell us why they are upping yours and why you are >taking it. > >I'm glad the new med will work quicker and you won't have to wait months to >see if it is working. You are in my thoughts and prayers and I just KNOW >that you are on the right track. Don't give up now. WE are all here for you >and you keep in touch. > >Sending lots of hugs and love > MSN Photos is the easiest way to share and print your photos: Click Here

[Guest guest]

Hi

As I told you before I've been on the Neurontin for around or over 8 months.

300mg three times a day. I really didn't notice if it made me tired, but then

again I was and still am tired " all " the time. It did however help the Fibro

pain. Since being DX with RP the Pred and MTX has also help a lot of my pain

and other strange things that have been going on with me. Who knows...perhaps

my immune system doesn't like any part of me. As I saw someone say RP can

affect other things than the specific cartiledge <sp> as stated. I think this

to be true as well or why would some of the physical problems I was having are

now lessened or gone? Go figure

I think if the doctor starts someone on a low doze of Neurontin like me they

should'nt have any problems. To much " will " knock you out. With a low dose you

may be tired. I take my three doses as one before I leave for work, one at

lunch time and then one around 6pm. So far it seems to be okay, however I sure

would kill for an afternoon nap at work. Some days it's very difficult for me

because I'm so tired, but with the other medical problems I have they could be

part of it and not the Neurontin.

Hope this helps

Hugs

Sharyn

, Please know that we are all here to listen. I am praying the new

meds will kick in and you will be dancing circles around us.

For you and Sally and T and all the others on Neurontin, did it take you

some getting use to?? Gosh I don't know why I reacted like I did on only

200mg. That is such a baby dose compared to what you are all on. I was

suppose to slowly up it, but I'm afraid I will be a zombie all the time. LOL

Now it sounds like I'm whining. LOL Sorry.

You keep us posted as to how you are. Hope you had a special time with your

Dad today. Give him a hug from me.

hugs

DISCLAIMER!!

WE ARE NOT MEDICAL PROFESSIONALS, THEREFORE ANY INFORMATION THAT IS RECEIVED HERE IS FROM EXPERIENCE ONLY. PLEASE CONSULT WITH YOUR DOCTOR BEFORE TRYING ANYTHING THAT IS SUGGESTED. WE ARE NOT A SUBSTITUTE FOR YOUR PHYSICIAN AND ARE NOT TRYING TO BE. REMEMBER EVERYONE IS DIFFERENT AND TREATMENT MAYBE DIFFERENT FOR MANY OF US. THANK YOU

[Guest guest]

In a message dated 6/17/02 4:57:21 AM Pacific Daylight Time,

sharynn@... writes:

<<

As I told you before I've been on the Neurontin for around or over 8 months.

300mg three times a day. I really didn't notice if it made me tired, but

then again I was and still am tired " all " the time. >>

Oh Sharyn, I guess I'm just a big sissy. LOL I took 200mg at bed time last

night and didn't get up til 11am today. I feel SO drugged. Can't even

imagin what your dose would do for me. LOL I will ask my PCP today. Maybe

it's reacting to another med I'm taking at night. Would sure be great to

get rid of the fibro pain.

Thanks for your input

hugs

[Guest guest]

In a message dated 6/17/02 12:42:09 PM Pacific Daylight Time,

sharynn@... writes:

<< What you need to do is take a few days off and just try it and see what

happens. You need to be very consistant as well and if you miss a dose do

not try and make it up. >>

[Guest guest]

In a message dated 6/17/02 12:42:09 PM Pacific Daylight Time,

sharynn@... writes:

<< What you need to do is take a few days off and just try it and see what

happens. You need to be very consistant as well and if you miss a dose do

not try and make it up. >>

Shoot Sharyn, I can't get past the night dose. LOL I'm not just tired, but

drugged. Can't get going and would not feel safe to drive. LOL I am going

to my PCP in a few minutes and will ask him.

I never slept either. I think I have found the wonder drug for sleep for me.

LOL I'm not going to give up. Just have to work up the nerve to take during

the day. LOL If you guys don't hear from me for a week, you will know I'm

just in a nice deep sleep, catching up on many years of sleep deprivation.

Thanks Sharyn for your input.

I have sent your post to Russ on to him. He doesn't have time to read the

group mail right now, he is really busy at work, so this just helps him out.

hugs

[Guest guest]

Okay..here is something you need to remember. Just like antideprenants when you

first take any kind of medicatoin like this it " will " knock you out. However,

after a few days your system should get use to it and you shouldn't feel so

tired. What you need to do is take a few days off and just try it and see what

happens. You need to be very consistant as well and if you miss a dose do not

try and make it up. My schedule is 5:30am, 12:00pm and 6:00pm. each is 300 mg a

pop. Heck...I still don't sleep and when I do I'm lucky I can get 4 hours of

sleep a night.

Hope this helps

hugs

Sharyn

>

> From: RCColloran@...

> Date: 2002/06/17 Mon PM 03:09:54 EDT

> To: Rpolychondritis

> Subject: Re: michelle from La trying to get my life

back-------

>

>

In a message dated 6/17/02 4:57:21 AM Pacific Daylight Time,

sharynn@... writes:

<<

As I told you before I've been on the Neurontin for around or over 8 months.

300mg three times a day. I really didn't notice if it made me tired, but

then again I was and still am tired " all " the time. >>

Oh Sharyn, I guess I'm just a big sissy. LOL I took 200mg at bed time last

night and didn't get up til 11am today. I feel SO drugged. Can't even

imagin what your dose would do for me. LOL I will ask my PCP today. Maybe

it's reacting to another med I'm taking at night. Would sure be great to

get rid of the fibro pain.

Thanks for your input

hugs

DISCLAIMER!!

WE ARE NOT MEDICAL PROFESSIONALS, THEREFORE ANY INFORMATION THAT IS RECEIVED HERE IS FROM EXPERIENCE ONLY. PLEASE CONSULT WITH YOUR DOCTOR BEFORE TRYING ANYTHING THAT IS SUGGESTED. WE ARE NOT A SUBSTITUTE FOR YOUR PHYSICIAN AND ARE NOT TRYING TO BE. REMEMBER EVERYONE IS DIFFERENT AND TREATMENT MAYBE DIFFERENT FOR MANY OF US. THANK YOU

[Guest guest]

Yep..these drugs will make you feel like you have been out on the town having a

good old time...but trust me when I say once your body gets use to it then you

should'nt feel that way. One trick is to always make sure you eat something.

Taking any type of medication without eating (unless it states to not eat

anything) will do a number on you and perhap your tummy as well.

Boy, if some people took some of the heavy medication I take they couldn't

function. However, I've been taking it for so long it's nothing. Even my pain

medication really isn't working that great, but I don't take anything that will

screw me up at work.

If you don't work then do take a few days off and take it..Heck if you

sleep what the heck..your body needs that anyway. I'ld kill if I could sleep

for a week.

Hugs

Sharyn

>

> From: RCColloran@...

> Date: 2002/06/17 Mon PM 04:20:45 EDT

> To: Rpolychondritis

> Subject: Re: michelle from La trying to get my life

back-------

>

>

In a message dated 6/17/02 12:42:09 PM Pacific Daylight Time,

sharynn@... writes:

<< What you need to do is take a few days off and just try it and see what

happens. You need to be very consistant as well and if you miss a dose do

not try and make it up. >>

Shoot Sharyn, I can't get past the night dose. LOL I'm not just tired, but

drugged. Can't get going and would not feel safe to drive. LOL I am going

to my PCP in a few minutes and will ask him.

I never slept either. I think I have found the wonder drug for sleep for me.

LOL I'm not going to give up. Just have to work up the nerve to take during

the day. LOL If you guys don't hear from me for a week, you will know I'm

just in a nice deep sleep, catching up on many years of sleep deprivation.

Thanks Sharyn for your input.

I have sent your post to Russ on to him. He doesn't have time to read the

group mail right now, he is really busy at work, so this just helps him out.

hugs

DISCLAIMER!!

WE ARE NOT MEDICAL PROFESSIONALS, THEREFORE ANY INFORMATION THAT IS RECEIVED HERE IS FROM EXPERIENCE ONLY. PLEASE CONSULT WITH YOUR DOCTOR BEFORE TRYING ANYTHING THAT IS SUGGESTED. WE ARE NOT A SUBSTITUTE FOR YOUR PHYSICIAN AND ARE NOT TRYING TO BE. REMEMBER EVERYONE IS DIFFERENT AND TREATMENT MAYBE DIFFERENT FOR MANY OF US. THANK YOU