RE: MONEREY JACK CHEESE PLEASE

[Guest guest]

Hey , good for you that you are getting these things figured out. Definitely keep us updated. I will be looking out for your messages on Friday. That is when you are seeing your nephrologist, right? Also, I really like the fact that instead of seeing you first, then running all the tests to see you again with the results, he got you to do all the test and not to waist time. I think your nephrologist knows what he is doing.

If you want my take on lowering or getting off prednisone here it is. I hate prednisone!!!! As bad as it sounds I think I would rather continue with chemo than go back on prednisone and believe me chemo is no easy thing. I think it may be ridiculous what I say, but I'm sure many members feel the same way about this. I can live with feeling crappy, being sick and being on meds. But when these meds are causing me to look ugly, that's another story. I don't want to seem to be vain, and I really am not. It's just when my face starts getting out of proportion is when I freak out. It has little to do with what people think, it has a lot to do with what I feel like when I look into the mirror. SO, I do try to get off prednisone as soon as possible HOWEVER, if it doesn't work, it doesn't work. In my experience I had plenty of times when I had to go back on higher dosages forsaking going off prednisone for yet another while. But believe me, feeling physically better beats looking pretty. If getting off prednisone meant not being able to function properly, to be completely beat up, then prednisone it was. Yes, I was lucky. Twice being on long term, high dosages of prednisone I was able to get off it. Still, it was no easy task. It took me about 4 years the first time, and a year and a half the other time.

So , my opinion is. Stay on the prednisone if you hurt without it and if it actually helping you. Be happy something is helping, some do not have that luxury. You will be better off physically and emotionally. There's no way around it. If you hurt your quality of life will be nil.

Mojo

MONEREY JACK CHEESE PLEASE

Hi Group,

I'm feeling a little like My friend `Humpty -Dumpty' here today!.........I just finished my 24 hr. urine catch and took it to the lab........then they drew 5 vials of blood and collected another urine sample.........Do I HAVE any fluids left ?...... I just want to thank all my wonderful Lupie Friends for looking out for me, and catching the fact that my cratinine level was way high.....and I needed to see my Nephrologist. I would have been clueless, had I not insisted on getting a copy of my last lab.tests.....then posted the results online to the group.

My Primary Care Doctor just didn't seem that concerned, and I don't have a Rheumy at the moment......My last Rheumatologist never sent my labs. to my Primary Doc. or Me......so I don't know how long things have been out of whack.....My Thyroid is also low again......but Dr. Ohman, my primary Doc. did adjust my meds for that.

I also have been `Doing the Prednisone Dance'.......,"up.......1...2....3.......down.......1......2.....3 " to try to keep this rash from eating me alive .......When it gets really bad it feels exactly what it must be like to have little ants biting me all over !!

Last week the rash was better, so Dr.O......had me start to taper of the Prednisone again.from 30 mg. to 20mg.........well after about 3 days I was hurting all over so bad, especially my feet and legs I could hardly walk......so I bumped the dose up by 5mg. and feel much better today.

I had just bought some Salmon Fillets a couple of days ago.....and I knew I had to get them scaled, and in the freezer today......I had also bought a roasted Chicken that I needed to get boned and in the freezer today.......so I needed to be able to function!!

I guess the reason I'm babbling on about all this is that I see posts from so many of you that say that if you can just `hang in there and get past the pain ' you can get off Prednisone!......I'm just afraid I'll never get off it, cause I get the rash so bad.

Now my Doc. thinks the rash is from my meds. and is lowering some of them to see if we can figure out which one or ones is causing the reccuring rash...........I'm just venting a little I guess because I' m worried about my kidneys now......and I just don't have a Doctor that I can trust .......I feel like a roulette wheel that keeps getting spun around and landing on `Spin Again'.......

Okay.....I'm done......I'd like some Monterey Jack cheese please.....

C.

"The LUPIES Store" Come check out our store...http://www.cafepress.com/thelupies"The LUPIES Web Page"http://www.itzarion.com/lupusgroup.html"The LUPIES online photo albums!" Check out what your fellow Lupies look like...http://www.picturetrail.com/gallery/view?username=lupies

[Guest guest]

Hey , good for you that you are getting these things figured out. Definitely keep us updated. I will be looking out for your messages on Friday. That is when you are seeing your nephrologist, right? Also, I really like the fact that instead of seeing you first, then running all the tests to see you again with the results, he got you to do all the test and not to waist time. I think your nephrologist knows what he is doing.

If you want my take on lowering or getting off prednisone here it is. I hate prednisone!!!! As bad as it sounds I think I would rather continue with chemo than go back on prednisone and believe me chemo is no easy thing. I think it may be ridiculous what I say, but I'm sure many members feel the same way about this. I can live with feeling crappy, being sick and being on meds. But when these meds are causing me to look ugly, that's another story. I don't want to seem to be vain, and I really am not. It's just when my face starts getting out of proportion is when I freak out. It has little to do with what people think, it has a lot to do with what I feel like when I look into the mirror. SO, I do try to get off prednisone as soon as possible HOWEVER, if it doesn't work, it doesn't work. In my experience I had plenty of times when I had to go back on higher dosages forsaking going off prednisone for yet another while. But believe me, feeling physically better beats looking pretty. If getting off prednisone meant not being able to function properly, to be completely beat up, then prednisone it was. Yes, I was lucky. Twice being on long term, high dosages of prednisone I was able to get off it. Still, it was no easy task. It took me about 4 years the first time, and a year and a half the other time.

So , my opinion is. Stay on the prednisone if you hurt without it and if it actually helping you. Be happy something is helping, some do not have that luxury. You will be better off physically and emotionally. There's no way around it. If you hurt your quality of life will be nil.

Mojo

MONEREY JACK CHEESE PLEASE

Hi Group,

I'm feeling a little like My friend `Humpty -Dumpty' here today!.........I just finished my 24 hr. urine catch and took it to the lab........then they drew 5 vials of blood and collected another urine sample.........Do I HAVE any fluids left ?...... I just want to thank all my wonderful Lupie Friends for looking out for me, and catching the fact that my cratinine level was way high.....and I needed to see my Nephrologist. I would have been clueless, had I not insisted on getting a copy of my last lab.tests.....then posted the results online to the group.

My Primary Care Doctor just didn't seem that concerned, and I don't have a Rheumy at the moment......My last Rheumatologist never sent my labs. to my Primary Doc. or Me......so I don't know how long things have been out of whack.....My Thyroid is also low again......but Dr. Ohman, my primary Doc. did adjust my meds for that.

I also have been `Doing the Prednisone Dance'.......,"up.......1...2....3.......down.......1......2.....3 " to try to keep this rash from eating me alive .......When it gets really bad it feels exactly what it must be like to have little ants biting me all over !!

Last week the rash was better, so Dr.O......had me start to taper of the Prednisone again.from 30 mg. to 20mg.........well after about 3 days I was hurting all over so bad, especially my feet and legs I could hardly walk......so I bumped the dose up by 5mg. and feel much better today.

I had just bought some Salmon Fillets a couple of days ago.....and I knew I had to get them scaled, and in the freezer today......I had also bought a roasted Chicken that I needed to get boned and in the freezer today.......so I needed to be able to function!!

I guess the reason I'm babbling on about all this is that I see posts from so many of you that say that if you can just `hang in there and get past the pain ' you can get off Prednisone!......I'm just afraid I'll never get off it, cause I get the rash so bad.

Now my Doc. thinks the rash is from my meds. and is lowering some of them to see if we can figure out which one or ones is causing the reccuring rash...........I'm just venting a little I guess because I' m worried about my kidneys now......and I just don't have a Doctor that I can trust .......I feel like a roulette wheel that keeps getting spun around and landing on `Spin Again'.......

Okay.....I'm done......I'd like some Monterey Jack cheese please.....

C.

"The LUPIES Store" Come check out our store...http://www.cafepress.com/thelupies"The LUPIES Web Page"http://www.itzarion.com/lupusgroup.html"The LUPIES online photo albums!" Check out what your fellow Lupies look like...http://www.picturetrail.com/gallery/view?username=lupies

[Guest guest]

Hey , good for you that you are getting these things figured out. Definitely keep us updated. I will be looking out for your messages on Friday. That is when you are seeing your nephrologist, right? Also, I really like the fact that instead of seeing you first, then running all the tests to see you again with the results, he got you to do all the test and not to waist time. I think your nephrologist knows what he is doing.

If you want my take on lowering or getting off prednisone here it is. I hate prednisone!!!! As bad as it sounds I think I would rather continue with chemo than go back on prednisone and believe me chemo is no easy thing. I think it may be ridiculous what I say, but I'm sure many members feel the same way about this. I can live with feeling crappy, being sick and being on meds. But when these meds are causing me to look ugly, that's another story. I don't want to seem to be vain, and I really am not. It's just when my face starts getting out of proportion is when I freak out. It has little to do with what people think, it has a lot to do with what I feel like when I look into the mirror. SO, I do try to get off prednisone as soon as possible HOWEVER, if it doesn't work, it doesn't work. In my experience I had plenty of times when I had to go back on higher dosages forsaking going off prednisone for yet another while. But believe me, feeling physically better beats looking pretty. If getting off prednisone meant not being able to function properly, to be completely beat up, then prednisone it was. Yes, I was lucky. Twice being on long term, high dosages of prednisone I was able to get off it. Still, it was no easy task. It took me about 4 years the first time, and a year and a half the other time.

So , my opinion is. Stay on the prednisone if you hurt without it and if it actually helping you. Be happy something is helping, some do not have that luxury. You will be better off physically and emotionally. There's no way around it. If you hurt your quality of life will be nil.

Mojo

MONEREY JACK CHEESE PLEASE

Hi Group,

I'm feeling a little like My friend `Humpty -Dumpty' here today!.........I just finished my 24 hr. urine catch and took it to the lab........then they drew 5 vials of blood and collected another urine sample.........Do I HAVE any fluids left ?...... I just want to thank all my wonderful Lupie Friends for looking out for me, and catching the fact that my cratinine level was way high.....and I needed to see my Nephrologist. I would have been clueless, had I not insisted on getting a copy of my last lab.tests.....then posted the results online to the group.

My Primary Care Doctor just didn't seem that concerned, and I don't have a Rheumy at the moment......My last Rheumatologist never sent my labs. to my Primary Doc. or Me......so I don't know how long things have been out of whack.....My Thyroid is also low again......but Dr. Ohman, my primary Doc. did adjust my meds for that.

I also have been `Doing the Prednisone Dance'.......,"up.......1...2....3.......down.......1......2.....3 " to try to keep this rash from eating me alive .......When it gets really bad it feels exactly what it must be like to have little ants biting me all over !!

Last week the rash was better, so Dr.O......had me start to taper of the Prednisone again.from 30 mg. to 20mg.........well after about 3 days I was hurting all over so bad, especially my feet and legs I could hardly walk......so I bumped the dose up by 5mg. and feel much better today.

I had just bought some Salmon Fillets a couple of days ago.....and I knew I had to get them scaled, and in the freezer today......I had also bought a roasted Chicken that I needed to get boned and in the freezer today.......so I needed to be able to function!!

I guess the reason I'm babbling on about all this is that I see posts from so many of you that say that if you can just `hang in there and get past the pain ' you can get off Prednisone!......I'm just afraid I'll never get off it, cause I get the rash so bad.

Now my Doc. thinks the rash is from my meds. and is lowering some of them to see if we can figure out which one or ones is causing the reccuring rash...........I'm just venting a little I guess because I' m worried about my kidneys now......and I just don't have a Doctor that I can trust .......I feel like a roulette wheel that keeps getting spun around and landing on `Spin Again'.......

Okay.....I'm done......I'd like some Monterey Jack cheese please.....

C.

"The LUPIES Store" Come check out our store...http://www.cafepress.com/thelupies"The LUPIES Web Page"http://www.itzarion.com/lupusgroup.html"The LUPIES online photo albums!" Check out what your fellow Lupies look like...http://www.picturetrail.com/gallery/view?username=lupies

[Guest guest]

Hi

C,

I

am sorry you are going through this hell. I hope they get the problem licked

soon. Kidney trouble is nothing to fool with and I know how painful it is. I

also know how itchy rashes can drive you to the nut house!

From:

lonewolflinda

I'm feeling a little like My friend `Humpty -Dumpty' here

today!.........I just finished my 24 hr. urine catch and took it to the

lab........then they drew 5 vials of blood and collected another urine

sample.........Do I HAVE any fluids left ?...... I just want to thank all

my wonderful Lupie Friends for looking out for me, and catching the fact that

my cratinine level was way high.....and I needed to see my Nephrologist. I

would have been clueless, had I not insisted on getting a copy of my last

lab.tests.....then posted the results online to the group.

My Primary Care Doctor just didn't seem that concerned, and I

don't have a Rheumy at the moment......My last Rheumatologist never sent my

labs. to my Primary Doc. or Me......so I don't know how long things have been

out of whack.....My Thyroid is also low again......but Dr. Ohman, my primary

Doc. did adjust my meds for that.

I also have been `Doing the Prednisone

Dance'......., " up.......1...2....3.......down.......1......2.....3 "

to try to keep this rash from eating me alive .......When it gets really bad it

feels exactly what it must be like to have little ants biting me all over

!!

Last week the rash was better, so Dr.O......had me start to taper

of the Prednisone again.from 30 mg. to 20mg.........well after about 3 days I

was hurting all over so bad, especially my feet and legs I could

hardly walk......so I bumped the dose up by 5mg. and feel much better today.

" The LUPIES Store " Come check

out our store...

http://www.cafepress.com/thelupies

" The LUPIES Web Page "

http://www.itzarion.com/lupusgroup.html

" The LUPIES online photo albums! "

Check out what your fellow Lupies look like...

http://www.picturetrail.com/gallery/view?username=lupies

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