Re: Question on efficacy of low dose prednisone for stills

[Guest guest]

Hi Brent, I will speak for my mom because I think I can better say it than her.

She truly believes that every time she feels sick and starts the predisone that

it keeps the flare from flaring. When she feels it coming she gets steroids and

weans them down and only taking them for a few weeks at a time. Maybe she is

right because she still has many active symptoms but no fever or rash anymore.

She thinks it is a remission and I guess from looking after herself she got to

know her system better than anyone. (She had to with no qualified docs here) So

her initial Rheumy doc told her to do this and it has worked for her so far. Her

doc now has given her permission to be accessible to steroids when she feels the

need. I didn't like that, but since she seen a doc familiar with stills in

Halifax - she was advised to do what she was doing but to get blood work done

first. I liked that idea.

She did have 2 spurs that I knew of and one was very recently.

In short I think the docs don't want to change anything she is doing if it is

working but just keep her monitored.

She had alot of weight gain in the onset which grew worse over time - she is

trying to deal with that now because it has lead to further problems due to the

weight.

She is constantly hungry and hyper, active at the time she takes steroids.

Hope this helps.

Take Care Sheri

Feel free to ask anything.

Question on efficacy of low dose prednisone for

stills

Hello, All.

I have a few questions for those who have used or are now using low doses

of prednisone for treatment of Stills.

Reply to any that apply to your situation.

.........................................

1. Do you feel that the low dose has or is helping control symptoms.

2. Has prednisone caused any problems, in short or long term use. ( Bone

loss, spurs puffiness, weight gain, sleep problems, appetite, elevated blood

sugar, high blood pressure etc.

3. Has your doctor stopped prescribing prednisone because it did not work,

or caused problems.

4. Has your doctor warned you of any problems that long-term use of

prednisone can cause.

5. Has your doctor refused to prescribe prednisone because of his fears of

It's side effects.

If anyone has anything else to share, please do.

I ask these questions, because I would like to know if (low-dose) prednisone

therapy actually helps more than it hurts, in Stills.

Many of the meds we are given, including prednisone, have proven to be

effective in other forms of arthritis and auto-immune disorders. Because of

this, and the fact that Stills is not well understood, we are given the same

types of medications. But does prednisone really help in low doses, and

what are the effects of using it for many years?

I'm not suggesting that anyone should stop taking prednisone, or that the

information given in replies to these questions should be considered

medical advice or used to self-treat yourself.

But I do think we should be able to ask our doctors questions based on

legitimate questions and concerns.

For example, if many of us reply that prednisone did not help, and has

caused problems, we might use this information discuss our concerns with our

own doctors.

I'll give my answers:

1. Do you feel that the low dose has or is helping control symptoms:

No.

2. Has prednisone caused any problems, in short or long term use. ( Bone

loss, spurs puffiness, weight gain, sleep problems, appetite, elevated blood

sugar, high blood pressure etc?

Yes. Bone loss, Heberdon nodes, puffiness, weight gain, sleep, craving for

sugar.

3. Has your doctor stopped prescribing prednisone because it did not work,

or caused problems.

No.

4. Has your doctor warned you of any problems that long-term use of

prednisone can cause. Somewhat.

5. Has your doctor refused to prescribe prednisone because of his fears of

It's side effects.

No. But some doctors did not want to give it to me early on, and some have

expressed concerns that I have been on low-dose prednisone for too long, and

that I should try to get off it. Hopefully, in my case, Remicade will make

this easier, since stopping long term prednisone use can be very difficult,

and a slow process.

Thanks in advance for any replies.

-Brent

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[Guest guest]

> .........................................

> 1. Do you feel that the low dose has or is helping control symptoms.

Yes it does, but not enough. When I finally got off of all of it, I went

into a flair in less than a month and had to go back on, but 5 mg was enough

to controlle the major symptoms. I am now on 2 mg, but trying to find

another med that will work, before going all the way down to 0.

>

> 2. Has prednisone caused any problems, in short or long term use. ( Bone

> loss, spurs puffiness, weight gain, sleep problems, appetite, elevated

blood

> sugar, high blood pressure etc.

I believe prednisone caused weight gain and has elevated both my sugar

(Iused to have low blood sugar) and my blood pressure.

>

> 3. Has your doctor stopped prescribing prednisone because it did not work,

> or caused problems.

Not yet as the good vs: bad of the equation is still to the good. We are

searching for a viable alternative before discontinuing Prednisone entirely.

>

> 4. Has your doctor warned you of any problems that long-term use of

> prednisone can cause.

Yes I have been warned and he has taken some steps to mitigate these effects

(ie: fosamax ever since I went on the Prednisone and Prilosac soon after.)

>

> 5. Has your doctor refused to prescribe prednisone because of his fears of

> It's side effects.

No

>

> If anyone has anything else to share, please do.

>

> I ask these questions, because I would like to know if (low-dose)

prednisone

> therapy actually helps more than it hurts, in Stills.

>

[Guest guest]

Dear Brent,

With the start of my " flares " my doctors automatically start me on 80mg of

prednisone now, and I wean down from there, but in my opinion they have me

coming down way too fast. For instance, last week I was on 80mg, this week...I

am already on 60mg...when I finally get down to the bottom, I stay low and I

feel at times that the low doses seem to really help me out and other times, I

want to take the bottle and flush them down the toilet, because the pain is so

bad, that I just want one of these quick " miracle drugs " to take away my pain.

With the prednisone, I definitely have problems sleeping and this is why I have

spent about 8 weeks on the sofa lately. I find myself very wired from it at

times, and when it comes time for bed, I still cannot relax, even if I take my

dose(s) early in the day. I have tried a couple of sleep aids prescribed by my

doctors, but for some reason, they work for the first couple of nights

incredible and about the third or fourth night, my body becomes very immune to

them and they REFUSE to work after that. They seem to really adjust to my body

and then have the opposite effect and don't work at all. This is highly

frustrating. So I try to relax my pain in my hot tub every night. This helps

at the present time with the pain, but only in the tub, and I feel when I get

out and lie down......the pain starts all over again and then I get miserable

and cranky because I cannot fall asleep due to the horrible pain in the soles of

my feet, ankles and legs, this is where the couch with the big arms comes into

play and I prop myself up on the couch or loveseat and elevate my feet and arms.

I find that the hot tub is only a very temporary relaxation for me. I too,

also crave food and feel like I cannot get enough of it, and this is where my

complaint comes in about weight gain. Now, I don't eat and eat, but my appetite

is very up and I am always hungry, but I have a lot of control over that....I

believe that a lot of the weight gain is coming from the puffiness of pred and

water weight, so I drink a lot of water to help out. I have gained about 30-35

pounds in a matter of months and all this weight gain does not make me feel

physically better, although the prednisone will..........what I am trying to

say, is that the prednisone may help my pain, but the extra weight gain is

something totally different for my body to deal with. It's trying to fight of

swelling and pain, but in the meantime my body is dealing with a new set of

problems, a lot of extra weight very fast. My body is not used to this and it

is very different for me.I have always been very petite, a size 3-4, so the

weight gain very much stresses me out, and people say exercise, but I also feel

that the prednisone can make me very fatigued at times, and with this disease, I

am very sore also, and my knees, ankles and feet are riddled with pain lately.

At times, I do try to move around a lot instead of sitting. I find if I sit or

lie down for long periods of time, then I really have bad problems. The doctor

has not told me of any really long term effects, except that they only want me

on it as soon as I feel a " flare " coming on. Prednisone was suppose to be short

term for me, but I have been " flaring " about every four months, because I am

still not " under control " yet with proper meds, but I am slowly getting there,

so I have been on prednisone for about a year now with very small break

in-between. I shudder everytime my Rheumy prescribes it again. Hope this

helps.

Sue #2