Re: I Need Info

[Guest guest]

In a message dated 08/31/1999 10:32:46 AM Eastern Daylight Time,

Idigflower@... writes:

> From: Idigflower@...

>

> Please tell me for those of you that have been on Prednisone long term:

> (Please Help Me).

>

> 1) Anyone on our group been on Prednisone for over a year, without going

off?

>

> And if so, how long?

>

>

> 2) What were your doses during that time?

>

>

> 3) What was the lowest you were able to get on the Prednisone without

> flairing up?

>

>

> 4) Has Imuran helped any of you get " OFF " the Prednisone?

> if so did you flair back up? How long did it take to flair back up?

>

> 5) If you are a long time Prednisone user what has happened to your body?

> (changes)

>

why are you asking this? I have been on prednisone constantly for four

years. The lowest was 5mgs and the highest 100mgs. at home in hospital it was

much more than 100,gs. I never tried imuran and I can't go below 10 without a

major flare. How did I change

I am a bitch, mood wise, I look pregnant have a fat face and will not look in

the mirror cause the person looking back just isn't me!

Angie

[Guest guest]

Rene Here

, I was on 15mg of Pred back in 1995. I'm on 40 mg right now. My face

is fat,

Moon face. I know you have been dealing w/RP longer than I have. My Rheumy

is

trying to take me down. I went to see my Internist. We discussed the

possible of a flare as I down the Pred. I told her I had to be realistic

about my disease. I know I'm going to have flares and that is just how it

is. However, since I met the group, there's one thing that I have learned

from everyone. There is hope. As long as you have hope there's a chance.

Don't get discourage, we're all pulling for you and ourselves. With the

technology today and the advancement w/DNA and all that good stuff. We have

just as much hope as everyone else. Remember we have an autoimmune diseases

not some contagious dx. If they find med. for the other disease it's more

likely that we can use this med.for us too. Plaquenil at one time was just

used for Rheum arthritis, but it is now use for Lupus and RP. There is hope.

Keep praying and remember God does not put more on us than we can bare. You

have been blessed w/a good husband who loves you. Some people who do not

have RP will never have what you have.

God is Love, he gave you someone who loves you for you. What a wonderful

life.

I just want to let you know that I had a very hard time with this dx. I

couldn't understand how in the world could I come down w/this. I have a

friend that has kidney involvement w/her lupus, I thought she would come up

with this before me,

However it did not work out that way. I also ask my doctor what made me get

this disease, and she didn't. I thought she was in worst shape than me.

This is just how it is and we must keep our chins up. Keep praying and

hoping. I do believe we all have a chance for remission.

Love you and Pray!!!!!!!!!

Rene

[Guest guest]

In a message dated 9/1/99 7:41:43 AM Central Daylight Time, RTI2264@...

writes:

<< This is just how it is and we must keep our chins up. Keep praying and

hoping. I do believe we all have a chance for remission.

Love you and Pray!!!!!!!!!

Rene

>>

Well said Rene' , besides if all of you hadn't gotten this weird illness you

would never had met me. See how boring your life would have been lol Just

joking with you! lol I do believe in laughter. Its good for the soul.

Keep praying & Take care.

Love

Lu

[Guest guest]

, I pray you will find that relief and verrrrrrrry soon. God bless.

Jo

Re: I Need Info

>From: Idigflower@...

>

>In a message dated 9/1/99 7:41:42 AM Central Daylight Time, RTI2264@...

>writes:

>

><< Keep praying and remember God does not put more on us than we can bare

>>

>

>Rene, You Got To Be Kidding, Right? ( we must have two different gods) My

>god is testing the hell out of me right about now!

>

>Thank You for all the kind words, It was much needed! I am at 30 Now on the

>Prednisone and low and behold my damn ears are clearing up once again, so I

>am stuck now at 30 I guess for a while. My Problem is I am allergic to just

>about all the Immunosupprerives (Metho-Sores, Arava-Rash and Sores,

>Imuran-not to sure its working now). I will not stop looking for the

" Magic "

>answer on how to stop or at least slow this down, I MUST GET OFF this Pred,

I

>know I sound like a baby but now I know why Dr. Trentham freaked when he

>found out how much of it I was on, the amount of Prednisone I was on and

for

>the length of time and now having to go back up on it AGAIN! will kill me,

I

>am black and blue from the Prednisone now and now have platelet probs from

it

>and not to mention also my esphagua yeast infection, boy was that a blast

>(felt like heart attacks) . I know this sounds nuts but I will go from

cost

>to cost, country to country if I have to at this point, to find something

>that will help me (Drug) or at least something to get me off the

Prednisone.

>People have e-mailed me telling me I have to deal with some pain and some

>disappointments (from our group), well let it be known I do not have to be

>this miserable and in so much pain, I feel like a bird is pecking my inner

>ears out, it is the worst imaginable pain I have ever known, enough to push

a

>person over the edge, this has gone on to far to still be like this, I need

>to find additional help and I WILL! and when I do I will share.

>

>

>

>

>---------------------------

[Guest guest]

In a message dated 9/2/99 11:12:51 PM Central Daylight Time, aginty@...

writes:

<< well let it be known I do not have to be

> this miserable and in so much pain, I feel like a bird is pecking my inner

> ears out, it is the worst imaginable pain I have ever known, enough to

push a

> person over the edge, this has gone on to far to still be like this, I need

> to find additional help and I WILL! and when I do I will share.

>

> >>

Hi ... Lu here... no you don't have to be totally that miserable, call

the doctor and tell him to give you something for that horrible pain. When

you hurt that bad, you need something. Just cut back on the pain meds when

you start to feeling better. No illness has to be painful anymore with such

wonderful meds we have available now. When mine is that bad, I take

something. Hang in there, it will get better. We are here for you....

Love ya!

Lu

[Guest guest]

In a message dated 9/2/99 11:34:01 PM Central Daylight Time, Lu1953@...

writes:

<< Hi ... Lu here... no you don't have to be totally that miserable,

call

the doctor and tell him to give you something for that horrible pain >>

Lu and all, Hi, I was sent to my ENT today from my Doctor's office, They

found sores way up high in my nose (left) and for the 1st time I actually had

fluid in the ears, I lost it at the DR's office and broke down and cried and

told him I can not go on like this, ( I think I freaked the daylights out of

him ), and asked why cant they do something to help, and the ENT said I went

down way to quick on the pred and he was surprised I was not worse then I

was, he looked over my recent blood work from 8-10-99 and was very concerned

about my last C-reactive Protein levels, and he called my doctor. They up'd

the Imuran to 150 mg from 100 kept me at 30 on the pred a prescribed a

medicine for pain called " Oxycontin " its an analgesia, its in the opioid

family and it's time released, and wow within 25 min I was pain free! it

works!

I asked him how will I know I am better if I am on such a strong Med, and he

said don't worry right now that my ears are very bad and I need it, and I

will know at night when it wares off, before I take another. They think also

if I stay at 30 mg on the pred for a while longer I should start getting

better real soon plus the additional Immuran will help me go down on the pred

but at much smaller amounts this time around (2 mg a week). The " Oxycotin " is

supposed to knock you out for only the 1st few days then your body gets used

to it, but what it did to me today is made me feel higher then a kite, and

wired, when I went to get the prescription I was given a very hard time at

the drug store (it was a special prescription pad that had to be typed out in

three copies) they made me feel like I was a drug dealer or something, they

made me show two photo I. D's and called the doctor, and they send a copy to

the DEA and back to the doctor. I cant believe or don't want to believe that

this is disorder is getting the best of me, but I am trying to accept it, I

guess I have no other choices right now. thanks for all the great support, I

wish I can be a bit more supportive to you all also, you all go way out of

your way to write me and I appreciate it so much.

P....Illinois

[Guest guest]

In a message dated 9/3/99 12:46:12 AM Central Daylight Time,

Idigflower@... writes:

<< I cant believe or don't want to believe that

this is disorder is getting the best of me, but I am trying to accept it, I

guess I have no other choices right now. thanks for all the great support, I

wish I can be a bit more supportive to you all also, you all go way out of

your way to write me and I appreciate it so much.

P....Illinois

>>

, you hang in there... you did the right thing today. If you can handle

the pain by taking something for it you will be able to handle the rest. I

think the pain will get you down faster than anything if it isn't controlled.

So I am really glad you got something for it. Just ignore the dumb

pharmacist, they know nothing about what you are going thru. Also it is a

know fact that you will not get addicted to pain killers when you are in that

severe of a pain. Believe me I know.. I have a long story that I am going to

write and tell you all about, if I can ever get around to it.

, we are here to vent, discuss, and lean on each other for support.

Don't ever feel bad about needing our support, we have all needed someone for

the same support at various times and I'm sure we will again.You did great

today speaking up for yourself. Take care, and I pray each day you will get

better and better.

Love ya!

LU

[Guest guest]

In a message dated 9/3/99 12:59:33 AM Central Daylight Time, Lu1953@...

writes:

<< Believe me I know.. I have a long story that I am going to

write and tell you all about, if I can ever get around to it. >>

Lu, Hurry, I want to hear about it LOL

P

[Guest guest]

In a message dated 9/3/99 1:26:38 AM Central Daylight Time,

Idigflower@... writes:

<< Lu, Hurry, I want to hear about it LOL

P >>

LOL you really don't its just a BORING MEDICAL story starring " yours truly "

as the patient. lol But I will get around to it...soon. maybe..hopefully. lol

Hey I see you went straight to bed. lol

Lu

[Guest guest]

In a message dated 9/3/99 1:30:22 AM Central Daylight Time, Lu1953@...

writes:

<< Hey I see you went straight to bed. lol

Lu >>

Bed? Whats that?

[Guest guest]

In a message dated 9/3/99 1:40:42 AM Central Daylight Time,

Idigflower@... writes:

<< < Hey I see you went straight to bed. lol

Lu >>

Bed? Whats that? >>

As of lately I wouldn't know? lol but I think I need a new one.

[Guest guest]

In a message dated 9/3/99 1:42:39 AM Central Daylight Time, Lu1953@...

writes:

<< Bed? Whats that? >>

As of lately I wouldn't know? lol but I think I need a new one.

>>

Dont laugh, but I tell you! we just bought a $2000.00 water bed and it dont

cut it either, now I have two beds, still no sleep and more pain, what else

can a girl ask for LOL

[Guest guest]

,

honest

I am trying not to laugh, but that is funny. 2 beds and you don't like either

of them. lol ,oops sorry.

We have a water bed with an egg shell cushion thing in between the sheets,

which helps somewhat. But sometimes no matter what the bed just hurts. I

thought about getting one of those feather bed things to go between the

sheets? I am as lost about finding comfort in the bed as anybody but I am all

ears to any good ideas. lol

Lu

[Guest guest]

Idigflower@... wrote:

>

> From: Idigflower@...

>

> In a message dated 9/1/99 7:41:42 AM Central Daylight Time, RTI2264@...

> writes:

>

> << Keep praying and remember God does not put more on us than we can bare >>

>

> Rene, You Got To Be Kidding, Right? ( we must have two different gods) My

> god is testing the hell out of me right about now!

>

> Thank You for all the kind words, It was much needed! I am at 30 Now on the

> Prednisone and low and behold my damn ears are clearing up once again, so I

> am stuck now at 30 I guess for a while. My Problem is I am allergic to just

> about all the Immunosupprerives (Metho-Sores, Arava-Rash and Sores,

> Imuran-not to sure its working now). I will not stop looking for the " Magic "

> answer on how to stop or at least slow this down, I MUST GET OFF this Pred, I

> know I sound like a baby but now I know why Dr. Trentham freaked when he

> found out how much of it I was on, the amount of Prednisone I was on and for

> the length of time and now having to go back up on it AGAIN! will kill me, I

> am black and blue from the Prednisone now and now have platelet probs from it

> and not to mention also my esphagua yeast infection, boy was that a blast

> (felt like heart attacks) . I know this sounds nuts but I will go from cost

> to cost, country to country if I have to at this point, to find something

> that will help me (Drug) or at least something to get me off the Prednisone.

> People have e-mailed me telling me I have to deal with some pain and some

> disappointments (from our group), well let it be known I do not have to be

> this miserable and in so much pain, I feel like a bird is pecking my inner

> ears out, it is the worst imaginable pain I have ever known, enough to push a

> person over the edge, this has gone on to far to still be like this, I need

> to find additional help and I WILL! and when I do I will share.

>

>

>

> ---------------------------

[Guest guest]

In a message dated 9/4/99 12:33:15 AM Central Daylight Time,

AngieCATW1@... writes:

<< how many of us walk the house most of the night? Angie

>>

I do, I lay down awhile, back up walk to the kitchen, eat. walk back

to bed, 30 minutes and I am at it again...just restless

[Guest guest]

In a message dated 9/4/99 12:38:21 AM Central Daylight Time,

AngieCATW1@... writes:

<< They say it is better than

a feather bed and an egg crate thinggy

Angie

>>

well I want to know about it too! I hate my bed.....lol

LU

[Guest guest]

In a message dated 9/4/99 12:41:07 AM Central Daylight Time,

AngieCATW1@... writes:

<< GO FOR IT! I'll buy your first one! lol

I am the second taker then. Hey thinking of that though why not buy a foam

form the size of the pillow you want and cut out a hole?

>>

well somebody go for it! I think you would have a market for it.

[Guest guest]

In a message dated 9/4/99 12:41:02 AM Central Daylight Time,

AngieCATW1@... writes:

<< why not buy a foam

form the size of the pillow you want and cut out a hole? >>

Foam is NOT as comfortable as " Down " or polyfill. I am making " Down one "

(Feathers).

[Guest guest]

In a message dated 9/4/99 8:41:26 AM Central Daylight Time,

Idigflower@... writes:

<< I am making " Down one "

(Feathers).

>>

I want one.... please

lu

[Guest guest]

In a message dated 9/4/99 10:05:43 AM Central Daylight Time, Lu1953@...

writes:

<< << I am making " Down one "

(Feathers).

>>

I want one.... please

lu >>

OK LU, I'll make you one, and you can give your opinion on it if it works.

Send me your addrs and last name, so I can send it, I have to finish mine 1st

so it will be about a week or 2.

[Guest guest]

hey there may not be a ton of us but between the two lists there are

140 or so not that you'll get rich BUT it is a release to be doing something

with the hands.

I want to pay you dear. I love talking to you on the phone and on the list.

Still waiting for yor visit

Angie

[Guest guest]

In a message dated 09/05/1999 7:33:31 PM Eastern Daylight Time,

Idigflower@... writes:

<< wont even tell you what my husband said when I showed him the finished

product, But you would have laughed, lets put it this way, I have been to

sick lately, so just imagine what he said! LOL (2nd best thing)

>>

that is too funny so did you make him one?

[Guest guest]

In a message dated 9/5/99 6:17:54 PM Central Daylight Time,

AngieCATW1@... writes:

<< hey Lu lets not go THERE! but boy can the imagination run wild. and nasty

Angie >>

BUT FUN ! makes you laugh anyway.

[Guest guest]

In a message dated 09/05/1999 10:41:54 PM Eastern Daylight Time,

Lu1953@... writes:

<< BUT FUN ! makes you laugh anyway. >>

you sure do Lu

[Guest guest]

In a message dated 09/05/1999 10:45:45 PM Eastern Daylight Time,

Lu1953@... writes:

<< I have not laughed this hard since the zuchinni. >>

how are those zucchini doingRoy?