Re: Getting sicker?

[Guest guest]

Prednisone is by far the worst drug I've been on since being hit with Sarc. I hate it, I've gained over 50 pounds and have had many of the side effects I'm about to list for Prednisone. The most common are:

Difficulty sleeping; feeling of a whirling motion; increased appetite; increased sweating; indigestion; mood changes; nervousness.

SEVERE side effects occur when using Prednisone:I've had most of these at one point or another. I was put on 80mg in the beginning by an idiot who wanted to use me as his "test Patient" I stayed on that dose for less then a week and wanted to jump off the Empire State Building, I was dropped to 60 mg by a Pulmonologist from Mt. Sinai in NYC I've been between 5-60 mg since 2/07 with the exception of the 6 week remission I had in 2008. Find someone who knows what their doing (LOL) or better yet is willing to listen and try the things you find we are or have been on and how they worked for us. I feel for you also I've been having a problem with a pain med I've been on for and my pain levels have been back up to between an 8-10 for the past month. The disease sucks but just keep counting your blessings and the good things in your life. I turned 49 yesterday and had the greatest Birthday of my life. My oldest son came home from college and the youngest (17) cleaned his room and the 4 of us spent the last day and a half together, hanging out, watching movies , playing and being a family. It was more then I could have ever asked for. Count the good things and concentrate on them. Deal with the bad things but don't lose your faith and hope. The good days start to mean more then they did before you got sick.. Here's the rest of the symptoms

Severe allergic reactions (rash; hives; itching; difficulty breathing; tightness in the chest; swelling of the mouth, face, lips, or tongue); appetite loss; black, tarry stools; changes in menstrual periods; convulsions; depression; diarrhea; dizziness; exaggerated sense of well-being; fever; general body discomfort; headache; increased pressure in the eye; joint or muscle pain; mood swings; muscle weakness; personality changes; prolonged sore throat, cold, or fever; puffing of the face; severe nausea or vomiting; swelling of feet or legs; unusual weight gain; vomiting material that looks like coffee grounds; weakness; weight loss.

Hope this helps.

G-d Bless

Mitch B

Read more: http://www.drugs.com/sfx/prednisone-side-effects.html#ixzz127JgVFW7

Getting sicker?

Hi,

I am getting a bit worried, as I had to call the ER last night as all of a sudden my neck and face are swollen - I look weird and puffy around my chin, cheeks and collar bone. When talking with the on call Neur. she was flabbergasted I was on 100 mg of the pred. and was completely silent after asking in a weird tone - are you sure you are reading the label right on how much to take?

I had blood labs done - the 11 that test for kidney, liver, blood sugar all that and they said it came back fine. I also had a strep. test as my throat it sore. I am scared because it seems every couple of days new stuff is happening and my doctor is just like...oh that is normal. I appreciate the advice from all of you and am looking into a specialist and thanks to Jackie for giving me some names of people not too far away....it will just take time to get a referral and time to get to them. I am nervous that the Pred. and the huge amounts of D3 are wrong for me? It seems like this disease has not much things set about how to treat it and everyone has different opinions about it. Remembering that the DR said my D and B levels were almost non existent is why I am on such a high dose of D3 (50,000) units every other day for 10 days, then once a week. Any way I have a sort of emergency appt with the Neur. tomorrow due to the swelling in my face and neck. Hope I get more an

swers and not more questions...and start to not have things go wrong with my body.

[Guest guest]

Hi Mitch,

Thanks for the information. How nice it was to have your kids home and just

hanging out! I have a 17 year old and he is in 11th grade - he is the best kid.

My spouse too is great. I feel for the guy as he has been running all over the

place taking me to doctor's appt and stuff without a complaint!

My doctor was irritated with me today. He told me not to trust most of what is

being said on this site as well as other reference sites about NS. He thinks I

am having a reaction to the pred. and I have to have a fast - blood sugar test

tomorrow and that if it is high I will be off the pred - on to a new medicine

that he says doesn't work as well and has other side affects that aren't good.

Also, says that it is anxiety that is causing the numbness in my tongue. He

still stands by the large dose of Pred. and seemed to be irritated that I

started to question his procedures. I live in a small town, and have to wait for

him to give me a referral - luckily though seems like it will be the Mayo Clinic

in MN and I am happy with that.

Thanks again for the reply and information you provided. Hope this email finds

you well and having some fun.

KP

>

> Prednisone is by far the worst drug I've been on since being hit with Sarc. I

hate it, I've gained over 50 pounds and have had many of the side effects I'm

about to list for Prednisone. The most common are:

> Difficulty sleeping; feeling of a whirling motion; increased appetite;

increased sweating; indigestion; mood changes; nervousness.

> SEVERE side effects occur when using Prednisone:I've had most of these at one

point or another. I was put on 80mg in the beginning by an idiot who wanted to

use me as his " test Patient " I stayed on that dose for less then a week and

wanted to jump off the Empire State Building, I was dropped to 60 mg by a

Pulmonologist from Mt. Sinai in NYC I've been between 5-60 mg since 2/07 with

the exception of the 6 week remission I had in 2008. Find someone who knows what

their doing (LOL) or better yet is willing to listen and try the things you find

we are or have been on and how they worked for us. I feel for you also I've been

having a problem with a pain med I've been on for and my pain levels have been

back up to between an 8-10 for the past month. The disease sucks but just keep

counting your blessings and the good things in your life. I turned 49 yesterday

and had the greatest Birthday of my life. My oldest son came home from college

and the youngest (17) cleaned his room and the 4 of us spent the last day and a

half together, hanging out, watching movies , playing and being a family. It was

more then I could have ever asked for. Count the good things and concentrate on

them. Deal with the bad things but don't lose your faith and hope. The good

days start to mean more then they did before you got sick.. Here's the rest of

the symptoms

> Severe allergic reactions (rash; hives; itching; difficulty breathing;

tightness in the chest; swelling of the mouth, face, lips, or tongue); appetite

loss; black, tarry stools; changes in menstrual periods; convulsions;

depression; diarrhea; dizziness; exaggerated sense of well-being; fever; general

body discomfort; headache; increased pressure in the eye; joint or muscle pain;

mood swings; muscle weakness; personality changes; prolonged sore throat, cold,

or fever; puffing of the face; severe nausea or vomiting; swelling of feet or

legs; unusual weight gain; vomiting material that looks like coffee grounds;

weakness; weight loss.

>

>

> Hope this helps.

>

>

> G-d Bless

>

>

> Mitch B

>

>

> Read more: http://www.drugs.com/sfx/prednisone-side-effects.html#ixzz127JgVFW7

>

>

>

>

>

> Getting sicker?

>

>

>

>

>

> Hi,

>

> I am getting a bit worried, as I had to call the ER last night as all of a

sudden my neck and face are swollen - I look weird and puffy around my chin,

cheeks and collar bone. When talking with the on call Neur. she was

flabbergasted I was on 100 mg of the pred. and was completely silent after

asking in a weird tone - are you sure you are reading the label right on how

much to take?

>

> I had blood labs done - the 11 that test for kidney, liver, blood sugar all

that and they said it came back fine. I also had a strep. test as my throat it

sore. I am scared because it seems every couple of days new stuff is happening

and my doctor is just like...oh that is normal. I appreciate the advice from

all of you and am looking into a specialist and thanks to Jackie for giving me

some names of people not too far away....it will just take time to get a

referral and time to get to them. I am nervous that the Pred. and the huge

amounts of D3 are wrong for me? It seems like this disease has not much things

set about how to treat it and everyone has different opinions about it.

Remembering that the DR said my D and B levels were almost non existent is why I

am on such a high dose of D3 (50,000) units every other day for 10 days, then

once a week. Any way I have a sort of emergency appt with the Neur. tomorrow due

to the swelling in my face and neck. Hope I get more an swers and not more

questions...and start to not have things go wrong with my body.

>

[Guest guest]

Well K.PRZY.. when they draw a sed rate and an ace level, which both of them are markers for your sarcoidosis/inflamation will come back (NORMAL) However when you come off the pred.. the markers will slowly creep back up.. the swelling in the face is normal for such high dose.. you have the moon face. it takes a long time for the swelling to leave.. that's not a good plan that your butthole doctor has..

Hugs,

NS-Moderator

Getting sicker?

Hi,I am getting a bit worried, as I had to call the ER last night as all of a sudden my neck and face are swollen - I look weird and puffy around my chin, cheeks and collar bone. When talking with the on call Neur. she was flabbergasted I was on 100 mg of the pred. and was completely silent after asking in a weird tone - are you sure you are reading the label right on how much to take?I had blood labs done - the 11 that test for kidney, liver, blood sugar all that and they said it came back fine. I also had a strep. test as my throat it sore. I am scared because it seems every couple of days new stuff is happening and my doctor is just like...oh that is normal. I appreciate the advice from all of you and am looking into a specialist and thanks to Jackie for giving me some names of people not too far away....it will just take time to get a referral and time to get to them. I am nervous that the Pred. and the huge amounts of D3 are wrong for me? It seems like this disease has not much things set about how to treat it and everyone has different opinions about it. Remembering that the DR said my D and B levels were almost non existent is why I am on such a high dose of D3 (50,000) units every other day for 10 days, then once a week. Any way I have a sort of emergency appt with the Neur. tomorrow due to the swelling in my face and neck. Hope I get more answers and not more questions...and start to not have things go wrong with my body.

[Guest guest]

Hi,

What is the sed rate? Is that the CRP leve, if it is my CRP level off the pred.

was 12.5. As far as the ACE level the doctor doesn't use that - I asked and he

said it has never indicated anything in his patients...so I don't know. What

exactly is the ACE level for again?

I am tappering off the pred now, but not off until DEC 16, which means I will

have been full does - 100 mg for about 5 or 6 weeks, and now am down to 60 for a

week and so on...until Dec. 16th.

Thanks for your help/information - we all appreciate it.

KP

>

> Well K.PRZY.. when they draw a sed rate and an ace level, which both of them

are markers for your sarcoidosis/inflamation will come back (NORMAL) However

when you come off the pred.. the markers will slowly creep back up.. the

swelling in the face is normal for such high dose.. you have the moon face. it

takes a long time for the swelling to leave.. that's not a good plan that your

butthole doctor has..

>

> Hugs,

>

> NS-Moderator

> Getting sicker?

>

>

>

> Hi,

>

> I am getting a bit worried, as I had to call the ER last night as all of a

sudden my neck and face are swollen - I look weird and puffy around my chin,

cheeks and collar bone. When talking with the on call Neur. she was

flabbergasted I was on 100 mg of the pred. and was completely silent after

asking in a weird tone - are you sure you are reading the label right on how

much to take?

>

> I had blood labs done - the 11 that test for kidney, liver, blood sugar all

that and they said it came back fine. I also had a strep. test as my throat it

sore. I am scared because it seems every couple of days new stuff is happening

and my doctor is just like...oh that is normal. I appreciate the advice from all

of you and am looking into a specialist and thanks to Jackie for giving me some

names of people not too far away....it will just take time to get a referral and

time to get to them. I am nervous that the Pred. and the huge amounts of D3 are

wrong for me? It seems like this disease has not much things set about how to

treat it and everyone has different opinions about it. Remembering that the DR

said my D and B levels were almost non existent is why I am on such a high dose

of D3 (50,000) units every other day for 10 days, then once a week. Any way I

have a sort of emergency appt with the Neur. tomorrow due to the swelling in my

face and neck. Hope I get more answers and not more questions...and start to not

have things go wrong with my body.

>