Re: from a new RP in Norway

March 3, 2001

Hello Sissel,

So glad you wrote us and joined in.

I work full time 100% and I am on Imuran too. I take 150 mgs. daily.

I understand what you mean by tiredness, sore aching muscles and headaches.

You might want to ask your doctor if he thinks you might also have a

condition called: Fibromyalgia. It sounds like you have all the symptoms of

it. I was recently diagnosed with this also and my doctor said that it was

caused by the RP. Talk to your doctor about it please.

If you feel you can work 100%, then do it. But don't tire yourself out too

much. This is not good for you and will make your immune system weak.

Again Sissel, welcome to our wonderful group.

Woods

BTW- I sent your post to a friend on the group that lives in Finland. His

name is Arto and he is a very sweet person.

>>>>>>>>>>>>>>>>>>>>>>>

Dear all of you!

I am new here, have had RP for two months, i am 53, a woman. Just now i am

only 50% on my job, but i think i am going back in 100% job in may/june.

A qestion: Are any of you able to go to 100% job?

Just now i am using Imurel, 100mg and Prednisolon, 5 mg every day. What do

you think about that?

I feel tired, painfull in the muscels and sometimes headacke.

Sorry for my english, but i hope you will understand me.

Love from Sissel in Norway (Norway is north in Europe. Just now we have snow

and cold).

---

Outgoing mail is certified Virus Free.

Checked by AVG anti-virus system (http://www.grisoft.com).

Version: 6.0.230 / Virus Database: 111 - Release Date: 1/25/01

March 3, 2001

hi sissel,

I just came back from 9 days in Sweden, its beautiful. My husband Sam was told he had RP last spring nearly two years after first ear flare. He works full time but is alway tired and feels lousy. He doesn't take the same medication as you, he takes Plaquinel I don't know if thats how you spell it. He hasn't seen much results from it but it can take six months to work.

Maybe it will take sometime for your medication to take affect. Hope you feel better soon

Cathy

March 3, 2001

hi sissel,

I just came back from 9 days in Sweden, its beautiful. My husband Sam was told he had RP last spring nearly two years after first ear flare. He works full time but is alway tired and feels lousy. He doesn't take the same medication as you, he takes Plaquinel I don't know if thats how you spell it. He hasn't seen much results from it but it can take six months to work.

Maybe it will take sometime for your medication to take affect. Hope you feel better soon

Cathy

March 3, 2001

hi sissel,

I just came back from 9 days in Sweden, its beautiful. My husband Sam was told he had RP last spring nearly two years after first ear flare. He works full time but is alway tired and feels lousy. He doesn't take the same medication as you, he takes Plaquinel I don't know if thats how you spell it. He hasn't seen much results from it but it can take six months to work.

Maybe it will take sometime for your medication to take affect. Hope you feel better soon

Cathy

March 3, 2001

Hi Sissel,

My name is Lucy and I live in North Carolina (United States). I am 56 years

of age and have been diagnosed with RP since Jan. 2000. I was on Prednisone

for a good while and ended up with steroid induced diabetes. Now that I am

off of the Prednisone, my sugar went down and I was able to get off of

insulin shots.

I am knowledgeable of RP in my ears, nose and maybe my eyes. So far, I have

been very fortunate not to have my trachea or bronchial tree.

You take care and welcome to the group, the best group of people you will

ever want to meet. You can get tons of information from the group. If you

have anything that might be helpful to others, please let us know.

Love and Prayers, Lucy in N.C., USA

from a new RP in Norway

> Dear all of you!

> I am new here, have had RP for two months, i am 53, a woman. Just now i am

only 50% on my job, but i think i am going back in 100% job in may/june.

> A qestion: Are any of you able to go to 100% job?

> Just now i am using Imurel, 100mg and Prednisolon, 5 mg every day. What do

you think about that?

> I feel tired, painfull in the muscels and sometimes headacke.

> Sorry for my english, but i hope you will understand me.

> Love from Sissel in Norway (Norway is north in Europe. Just now we have

snow and cold).

> 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

>

March 3, 2001

Hi Sissel,

My name is Lucy and I live in North Carolina (United States). I am 56 years

of age and have been diagnosed with RP since Jan. 2000. I was on Prednisone

for a good while and ended up with steroid induced diabetes. Now that I am

off of the Prednisone, my sugar went down and I was able to get off of

insulin shots.

I am knowledgeable of RP in my ears, nose and maybe my eyes. So far, I have

been very fortunate not to have my trachea or bronchial tree.

You take care and welcome to the group, the best group of people you will

ever want to meet. You can get tons of information from the group. If you

have anything that might be helpful to others, please let us know.

Love and Prayers, Lucy in N.C., USA

from a new RP in Norway

> Dear all of you!

> I am new here, have had RP for two months, i am 53, a woman. Just now i am

only 50% on my job, but i think i am going back in 100% job in may/june.

> A qestion: Are any of you able to go to 100% job?

> Just now i am using Imurel, 100mg and Prednisolon, 5 mg every day. What do

you think about that?

> I feel tired, painfull in the muscels and sometimes headacke.

> Sorry for my english, but i hope you will understand me.

> Love from Sissel in Norway (Norway is north in Europe. Just now we have

snow and cold).

> 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

>

March 3, 2001

Hi Sissel, I'm and I am 49 and live in California. I am also on

Prednisone (20mg a day) and just started Imuran. I too am really tired and

have really sore muscles. I also have fibromyalgia.

You have found a wonderful group. Just keep asking all the questions you

want.

Well, they call it sunny California, but believe me it isn't. It has rained

all day today and it is cold. Can't wait til spring really gets here.

Can't wait to get to know you better. Please keep posting.

Hugs

March 3, 2001

Hello Sissel,

So glad that you found us! Too bad that you have RP!

I also take Imuran 100mg and have been on it for over

7 yrs. I only take predisone when I have to during a

flare. I live in Oregon which is the USA and am

raising a grandchild and work 100% or full time. I

lead a pretty normal life another words.LOL Well as

normal as can be for me! I hope you find this group

as great as I do. They are the most helpful group of

people you will ever meet. So ask all the questions

that you like and they will help you find the answers

or show you where you can. We are just one big family

here.

Again Welcome!

Lots of Love

Glenda

__________________________________________________

March 3, 2001

Hello Sissel,

So glad that you found us! Too bad that you have RP!

I also take Imuran 100mg and have been on it for over

7 yrs. I only take predisone when I have to during a

flare. I live in Oregon which is the USA and am

raising a grandchild and work 100% or full time. I

lead a pretty normal life another words.LOL Well as

normal as can be for me! I hope you find this group

as great as I do. They are the most helpful group of

people you will ever meet. So ask all the questions

that you like and they will help you find the answers

or show you where you can. We are just one big family

here.

Again Welcome!

Lots of Love

Glenda

__________________________________________________

March 3, 2001

Hi Sissel,

My name is Sandy and I was diagnosed with RP. in May of 1999.

I have not been able to work since March of 99. It sounds like you might

have Fibromyalgia along with the RP. I am looking forward to learning more

about you.

Hugs,

Sandy

> Dear all of you!

> I am new here, have had RP for two months, i am 53, a woman. Just now i am

only 50% on my job, but i think i am going back in 100% job in may/june.

> A qestion: Are any of you able to go to 100% job?

> Just now i am using Imurel, 100mg and Prednisolon, 5 mg every day. What do

you think about that?

> I feel tired, painfull in the muscels and sometimes headacke.

> Sorry for my english, but i hope you will understand me.

> Love from Sissel in Norway (Norway is north in Europe. Just now we have

snow and cold).

> 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

>

March 4, 2001

Love from Sissel in Norway

Dear Sissel- Welcome to our group. Your English is just fine. Wait til you see some of my spelling!!! It is my husband Pete who has RP. He does not work but there are many in the group who do. Janet G

March 4, 2001

Sissel, Welcome to the group! We each have varying degrees of pain , energy

and whatever, it all depends on the meds we're on and how they react on us,

plus we all have good days and bad days. I think the only thing we truly all

have in common is the hot, red ears! After that everyone is different. Some

of us work full time, some part-time and some are on disability - it all

depends on the stages of RP and the other illnesses involved.

If you are looking for information and support, you have come to the right

place. The first reaction to the diagnosis is usually terror, we all thought

it was a death sentence. We've learned since that altho RP cannot be cured

(Yet), it can be managed. Part of the process if figuring out what works

best for each of us and what doesn't. You'll get lots of information from

the group, consant support, and, believe it or not, lots of laughs! I never

realized I would laugh so much when I joined, but I do - and remember,

laughter IS the best medicine! Welcome, and feel free to jump in anytime

with questions, comments, jokes or whatever! LOL, Judy O

March 4, 2001