Re: introduction + prednisone question

July 17, 2012

Hi Mike,

Sounds so familiar. I was diagnosed after 6 months from first flare and 3

months of flares every two weeks. Finally, after prednisone being suggested, by

my cardiologist, since last fall, I gave in when I had a diagnoses of Stills.

Fevers, aches, everything but a rash.

I started prednisone 6 weeks ago at 40mg. Have now gotten down to 20mg. The

first two weeks I felt soooooo much better, I was working and flares were just a

ghost of what they had been. Weaning off the prednisone has not been the

easiest. Some days are better. Yesterday was not a great day but I got through

somehow. Today is much better.

I have made a point to walk 30 - 45 minutes a day as well as eat healthy foods.

I have only gained 5 pounds since I started.

I do get the sweats and lightheadedness, my skin has broken out like a teenager

when hormonal. That shouldn't be a problem for you, lol. I have moon face but

everyone says I look normal, very sweet of them Not a lot of fun but not as

bad as the flares. I am not saying taking pred is easy but at least I am not in

the ER every two weeks with a pleural effusion, high fevers, anemia, headaches,

etc.. My quality of life is better at this point.

I am going down 5mg every 4 days until I get to 10 and then I will stay there

and see what happens. I can keep in touch with my rheumy through Patient

Gateway and we can see where to go next.

Last Monday, when I was there, he explained it to me like this: The prednisone,

essentially, is replacing one disease with another. The hopes are that the

Stills goes into remission and the effects from the pred subside when off of it.

It may not happen but this is Plan A. I take Advil when my knees hurt so I can

do my walks. It does help me, luckily.

He also told me that some of the things that I thought are Stills symptoms can

also be from the prednisone.

If you really want relief then maybe prednisone is the way to go. Talk to me in

a few months and see how I feel then, lol. Story may change.

Hoping for the best for you,

a Elson

From: Mike

Sent: Tuesday, July 17, 2012 7:32 PM

To: Stillsdisease

Subject: introduction + prednisone question

Hi Everyone,

I thought I'd introduce myself and ask a question while i'm at it.

First the background...

After a month of battling fevers, body aches, and fatigue, and getting all kinds

of tests and body scans, I was finally diagnosed with Stills disease just last

week.

I've been on anti-inflammatory drugs (Naproxen) since then. Thankfully, my

fevers have pretty much disappeared. On occassion i get some low grade fevers

(99-100), but they don't bother me at all...maybe because i've already

experienced the serious stuff at 104+ in the past!

I do have muscle/joint pains that I'd characterize as 4 on a scale of 1-10 (10

being worst).

And I have a rash that itches at times. I'd say a 5 on a scale of 1-10 (10 being

worst).

And of course I still do experience fatigue.

My doctor has recommended that I go on prednisone, 40mg per day. Her expectation

would be to reduce to 30 mg after 1 month, and to 15-20 mg after 6 weeks, and

then slowly reduce further over more time. She explained that reduction tends to

slow down as you get to lower and lower levels otherwise the symptoms return.

Just wanted to get a sense of others' experiences with prednisone, as I've read

about the side effects, and that is a little bit scary.

Thanks, and glad to know that there is a support group out there like this.

-Mike

July 17, 2012

Howdy Mike! Prednisone is a double edged sword! I was initially started

on high doses of Naproxen and 60mg of Prednisone per day. Well, to make a

long story short I hate the pred as I've ballooned up 60+ lbs and have been

on it for close to 10 years now. Each summer for the past 3 years I can get

down to 2mg per day or less only to have to increase it every single

winter! Naproxen was another nightmare as they had my dose so high for so

long that I can no longer tolerate it at all as it makes my stomach feel

like it is on fire. Luckily after a year of bouncing around to various RD's

who had no clue what the hell to do with me I came across the one I have

now, who is worth the 100 mile trip (in each direction) and has me on

Kineret and a books worth of other meds.

Luckily it seems like you may not have it as severe as some of us, which

is a gift from GOD! Best of luck to you man, and let me know if I can be of

any assistance.

Kirk

> **

>

> Hi Everyone,

>

> I thought I'd introduce myself and ask a question while i'm at it.

>

> First the background...

> After a month of battling fevers, body aches, and fatigue, and getting all

> kinds of tests and body scans, I was finally diagnosed with Stills disease

> just last week.

>

> I've been on anti-inflammatory drugs (Naproxen) since then. Thankfully, my

> fevers have pretty much disappeared. On occassion i get some low grade

> fevers (99-100), but they don't bother me at all...maybe because i've

> already experienced the serious stuff at 104+ in the past!

> I do have muscle/joint pains that I'd characterize as 4 on a scale of 1-10

> (10 being worst).

> And I have a rash that itches at times. I'd say a 5 on a scale of 1-10 (10

> being worst).

> And of course I still do experience fatigue.

>

> My doctor has recommended that I go on prednisone, 40mg per day. Her

> expectation would be to reduce to 30 mg after 1 month, and to 15-20 mg

> after 6 weeks, and then slowly reduce further over more time. She explained

> that reduction tends to slow down as you get to lower and lower levels

> otherwise the symptoms return.

>

> Just wanted to get a sense of others' experiences with prednisone, as I've

> read about the side effects, and that is a little bit scary.

>

> Thanks, and glad to know that there is a support group out there like this.

> -Mike

>

--

Everything in life sucks except things that should!

July 17, 2012

Welcome, Mike. I am sorry you need us and glad you found us. Yes, you

definately want to follow your doctor's advice about the tapering of the

prednisone. People here call it the drug we love to hate. It helps with the

symptoms and makes you feel better, but you can't stay on it. It does have

side effects that can be bad, but sometimes you have to have it. Good luck,

and I am glad you found us. When I was first diagnosed, this group was a

treasure trove of information and support. I hope it will be similar for

you.

April

Sent from my Verizon Wireless Phone

introduction + prednisone question

Hi Everyone,

I thought I'd introduce myself and ask a question while i'm at it.

First the background...

After a month of battling fevers, body aches, and fatigue, and getting all

kinds of tests and body scans, I was finally diagnosed with Stills disease

just last week.

I've been on anti-inflammatory drugs (Naproxen) since then. Thankfully, my

fevers have pretty much disappeared. On occassion i get some low grade

fevers (99-100), but they don't bother me at all...maybe because i've

already experienced the serious stuff at 104+ in the past!

I do have muscle/joint pains that I'd characterize as 4 on a scale of 1-10

(10 being worst).

And I have a rash that itches at times. I'd say a 5 on a scale of 1-10 (10

being worst).

And of course I still do experience fatigue.

My doctor has recommended that I go on prednisone, 40mg per day. Her

expectation would be to reduce to 30 mg after 1 month, and to 15-20 mg after

6 weeks, and then slowly reduce further over more time. She explained that

reduction tends to slow down as you get to lower and lower levels otherwise

the symptoms return.

Just wanted to get a sense of others' experiences with prednisone, as I've

read about the side effects, and that is a little bit scary.

Thanks, and glad to know that there is a support group out there like this.

-Mike

July 17, 2012

Welcome, Mike. I am sorry you need us and glad you found us. Yes, you

definately want to follow your doctor's advice about the tapering of the

prednisone. People here call it the drug we love to hate. It helps with the

symptoms and makes you feel better, but you can't stay on it. It does have

side effects that can be bad, but sometimes you have to have it. Good luck,

and I am glad you found us. When I was first diagnosed, this group was a

treasure trove of information and support. I hope it will be similar for

you.

April

Sent from my Verizon Wireless Phone

introduction + prednisone question

Hi Everyone,

I thought I'd introduce myself and ask a question while i'm at it.

First the background...

After a month of battling fevers, body aches, and fatigue, and getting all

kinds of tests and body scans, I was finally diagnosed with Stills disease

just last week.

I've been on anti-inflammatory drugs (Naproxen) since then. Thankfully, my

fevers have pretty much disappeared. On occassion i get some low grade

fevers (99-100), but they don't bother me at all...maybe because i've

already experienced the serious stuff at 104+ in the past!

I do have muscle/joint pains that I'd characterize as 4 on a scale of 1-10

(10 being worst).

And I have a rash that itches at times. I'd say a 5 on a scale of 1-10 (10

being worst).

And of course I still do experience fatigue.

My doctor has recommended that I go on prednisone, 40mg per day. Her

expectation would be to reduce to 30 mg after 1 month, and to 15-20 mg after

6 weeks, and then slowly reduce further over more time. She explained that

reduction tends to slow down as you get to lower and lower levels otherwise

the symptoms return.

Just wanted to get a sense of others' experiences with prednisone, as I've

read about the side effects, and that is a little bit scary.

Thanks, and glad to know that there is a support group out there like this.

-Mike

July 17, 2012

Welcome, Mike. I am sorry you need us and glad you found us. Yes, you

definately want to follow your doctor's advice about the tapering of the

prednisone. People here call it the drug we love to hate. It helps with the

symptoms and makes you feel better, but you can't stay on it. It does have

side effects that can be bad, but sometimes you have to have it. Good luck,

and I am glad you found us. When I was first diagnosed, this group was a

treasure trove of information and support. I hope it will be similar for

you.

April

Sent from my Verizon Wireless Phone

introduction + prednisone question

Hi Everyone,

I thought I'd introduce myself and ask a question while i'm at it.

First the background...

After a month of battling fevers, body aches, and fatigue, and getting all

kinds of tests and body scans, I was finally diagnosed with Stills disease

just last week.

I've been on anti-inflammatory drugs (Naproxen) since then. Thankfully, my

fevers have pretty much disappeared. On occassion i get some low grade

fevers (99-100), but they don't bother me at all...maybe because i've

already experienced the serious stuff at 104+ in the past!

I do have muscle/joint pains that I'd characterize as 4 on a scale of 1-10

(10 being worst).

And I have a rash that itches at times. I'd say a 5 on a scale of 1-10 (10

being worst).

And of course I still do experience fatigue.

My doctor has recommended that I go on prednisone, 40mg per day. Her

expectation would be to reduce to 30 mg after 1 month, and to 15-20 mg after

6 weeks, and then slowly reduce further over more time. She explained that

reduction tends to slow down as you get to lower and lower levels otherwise

the symptoms return.

Just wanted to get a sense of others' experiences with prednisone, as I've

read about the side effects, and that is a little bit scary.

Thanks, and glad to know that there is a support group out there like this.

-Mike

July 17, 2012

Hi mike

When I read ur post I automatically thought about myself. I've been

searching for the right diagnosis for 8 months and finally today after

seeing a doctor on lansing mi she finally confirmed the diagnosis that its

stills disease and probably I had to have it when I was lil because I've

told her that back in 88/89 my mom took me to a doc with a rash on my chest

the doc said its milk allergy, but it didn't make sense because the rash

kept appearing and disappearing. Either way I'm starting mtx tomm .4cc's n

folic acid I'm also on lyrica for fibro (diagnosed few months ago when all

of this started) and salsalate 3xa day (ntfs, I've taken all of ntfs on the

list, that's the last one ) none of the nfts worked do far. Swelling and

pain and also joint damage is my hands still there. I wish that stuff would

disappear at some point but that's prolly impossible.

The group is wonderful. Facebook groups also are great, and a lot quicker

when it comes to responses.

I wish u luck, hopefully ull feel better soon

-ewelina s.

> **

>

> Hi Mike,

>

> Sounds so familiar. I was diagnosed after 6 months from first flare and 3

> months of flares every two weeks. Finally, after prednisone being

> suggested, by my cardiologist, since last fall, I gave in when I had a

> diagnoses of Stills. Fevers, aches, everything but a rash.

>

> I started prednisone 6 weeks ago at 40mg. Have now gotten down to 20mg.

> The first two weeks I felt soooooo much better, I was working and flares

> were just a ghost of what they had been. Weaning off the prednisone has not

> been the easiest. Some days are better. Yesterday was not a great day but I

> got through somehow. Today is much better.

>

> I have made a point to walk 30 - 45 minutes a day as well as eat healthy

> foods. I have only gained 5 pounds since I started.

>

> I do get the sweats and lightheadedness, my skin has broken out like a

> teenager when hormonal. That shouldn't be a problem for you, lol. I have

> moon face but everyone says I look normal, very sweet of them Not a lot of

> fun but not as bad as the flares. I am not saying taking pred is easy but

> at least I am not in the ER every two weeks with a pleural effusion, high

> fevers, anemia, headaches, etc.. My quality of life is better at this point.

>

> I am going down 5mg every 4 days until I get to 10 and then I will stay

> there and see what happens. I can keep in touch with my rheumy through

> Patient Gateway and we can see where to go next.

>

> Last Monday, when I was there, he explained it to me like this: The

> prednisone, essentially, is replacing one disease with another. The hopes

> are that the Stills goes into remission and the effects from the pred

> subside when off of it. It may not happen but this is Plan A. I take Advil

> when my knees hurt so I can do my walks. It does help me, luckily.

>

> He also told me that some of the things that I thought are Stills symptoms

> can also be from the prednisone.

>

> If you really want relief then maybe prednisone is the way to go. Talk to

> me in a few months and see how I feel then, lol. Story may change.

>

> Hoping for the best for you,

>

> a Elson

>

> From: Mike

> Sent: Tuesday, July 17, 2012 7:32 PM

> To: Stillsdisease

> Subject: introduction + prednisone question

>

> Hi Everyone,

>

> I thought I'd introduce myself and ask a question while i'm at it.

>

> First the background...

> After a month of battling fevers, body aches, and fatigue, and getting all

> kinds of tests and body scans, I was finally diagnosed with Stills disease

> just last week.

>

> I've been on anti-inflammatory drugs (Naproxen) since then. Thankfully, my

> fevers have pretty much disappeared. On occassion i get some low grade

> fevers (99-100), but they don't bother me at all...maybe because i've

> already experienced the serious stuff at 104+ in the past!

> I do have muscle/joint pains that I'd characterize as 4 on a scale of 1-10

> (10 being worst).

> And I have a rash that itches at times. I'd say a 5 on a scale of 1-10 (10

> being worst).

> And of course I still do experience fatigue.

>

> My doctor has recommended that I go on prednisone, 40mg per day. Her

> expectation would be to reduce to 30 mg after 1 month, and to 15-20 mg

> after 6 weeks, and then slowly reduce further over more time. She explained

> that reduction tends to slow down as you get to lower and lower levels

> otherwise the symptoms return.

>

> Just wanted to get a sense of others' experiences with prednisone, as I've

> read about the side effects, and that is a little bit scary.

>

> Thanks, and glad to know that there is a support group out there like this.

> -Mike

>

July 17, 2012