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My flares were coming every 2 weeks. I have now been on pred two weeks this

coming Tuesday and I can feel a very slight flare happening. Not sure if it

will remain really mild or not on the pred. The next couple of days will tell.

The uncomfortable throat issue has never really gone away but knees have been

much better. I can go for walks now. I have had a few very light headed

moments this weekend, like I do when I have a flare, could be the anemia? I

also feel a slight pleural effusion but very slight right now.

Is this normal when you are taking prednisone?

Thanks,

a

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Thanks

I do need to keep a record of my symptoms.

a

Sent: Monday, June 18, 2012 12:48 PM

To: Stillsdisease

Subject: Re: Question

Good day a,

I’m glad your knees are a bit better so that you’re able to walk a bit. We

can’t know why you’re getting light headed but it is possible for the anemia

to be a cause. Try and have a chair around the places you stand and move slowly

when you get up.

Something that may help is to write down your symptoms each day and times of day

with fever spikes. This can be a most helpful tool for you to learn your disease

and for your doctor to see what patterns and symptoms you are having with each

treatment plan.

Taking Prednisone can relieve so much of the symptoms but does not stop the

disease so yes, still having any symptoms can be normal but always ask and keep

your doctor informed so he/she can decide the best treatment at each stage.

Keep your spirits up if you can and thank you for sharing with us.

Smiles and hugs,

From: celson001@...

My flares were coming every 2 weeks. I have now been on pred two weeks this

coming Tuesday and I can feel a very slight flare happening.

The uncomfortable throat issue has never really gone away but knees have been

much better. I can go for walks now. I have had a few very light headed moments

this weekend, like I do when I have a flare, could be the anemia? I also feel a

slight pleural effusion but very slight right now.

Is this normal when you are taking prednisone?

Thanks,

a

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Hi Everyone!

I am FINALLY going to see the new doc at the Pain Clinic tomorrow.. really

looking forward to being treated like a human, at least, I hope that will

happen! My doc stopped prescribing pain meds for me last month, so I've

been limping through on the little bit I had left. She decided that

Still's disease is not painful, and that MS, which I also have 'only causes

pain in a small percentage of the population.' WRONG!

But, what I wanted to ask everyone is about unusual sweating. I sweat from

my head only, whenever I do even small exertions, like unloading the

dishwasher and such. Does this happen to anyone else?

I thought it might be related to prednisone, but I've had this sweating

even when I don't take it.

Any ideas anyone?

Blessings to all,

Holly

*Holly *

*

*

*Holly Dorst*

*Compassionate Help with Difficult Issues*

*1050 N 3rd St., Ste B2*

*Laramie, WY 82072*

**

*

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Hi Everyone!

I am FINALLY going to see the new doc at the Pain Clinic tomorrow.. really

looking forward to being treated like a human, at least, I hope that will

happen! My doc stopped prescribing pain meds for me last month, so I've

been limping through on the little bit I had left. She decided that

Still's disease is not painful, and that MS, which I also have 'only causes

pain in a small percentage of the population.' WRONG!

But, what I wanted to ask everyone is about unusual sweating. I sweat from

my head only, whenever I do even small exertions, like unloading the

dishwasher and such. Does this happen to anyone else?

I thought it might be related to prednisone, but I've had this sweating

even when I don't take it.

Any ideas anyone?

Blessings to all,

Holly

*Holly *

*

*

*Holly Dorst*

*Compassionate Help with Difficult Issues*

*1050 N 3rd St., Ste B2*

*Laramie, WY 82072*

**

*

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Hi Holly,

A side affect from taking you off the pain meds could be all the sweating. 

I've been sweating a lot lately and don't know why.  I've also had high bp,

high pr, and don't know why.  My doc mentioined Cushings Syndrome, too much

cortisone. Let us know what your doc says. I'l keep you posted too.

>________________________________

>

>To: Stillsdisease

>Sent: Tuesday, June 19, 2012 7:46 PM

>Subject: Re: Question

>

>Hi Everyone!

>I am FINALLY going to see the new doc at the Pain Clinic tomorrow.. really

>looking forward to being treated like a human, at least, I hope that will

>happen!  My doc stopped prescribing pain meds for me last month, so I've

>been limping through on the little bit I had left.  She decided that

>Still's disease is not painful, and that MS, which I also have 'only causes

>pain in a small percentage of the population.'  WRONG!

>

>But, what I wanted to ask everyone is about unusual sweating.  I sweat from

>my head only, whenever I do even small exertions, like unloading the

>dishwasher and such.  Does this happen to anyone else?

>

>I thought it might be related to prednisone,  but I've had this sweating

>even when I don't take it.

>Any ideas anyone?

>

>Blessings to all,

>Holly

>*Holly *

>*

>*

>*Holly Dorst*

>*Compassionate Help with Difficult Issues*

>*1050 N 3rd St., Ste B2*

>*Laramie, WY  82072*

>**

>*

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Guest guest

Hi Holly,

A side affect from taking you off the pain meds could be all the sweating. 

I've been sweating a lot lately and don't know why.  I've also had high bp,

high pr, and don't know why.  My doc mentioined Cushings Syndrome, too much

cortisone. Let us know what your doc says. I'l keep you posted too.

>________________________________

>

>To: Stillsdisease

>Sent: Tuesday, June 19, 2012 7:46 PM

>Subject: Re: Question

>

>Hi Everyone!

>I am FINALLY going to see the new doc at the Pain Clinic tomorrow.. really

>looking forward to being treated like a human, at least, I hope that will

>happen!  My doc stopped prescribing pain meds for me last month, so I've

>been limping through on the little bit I had left.  She decided that

>Still's disease is not painful, and that MS, which I also have 'only causes

>pain in a small percentage of the population.'  WRONG!

>

>But, what I wanted to ask everyone is about unusual sweating.  I sweat from

>my head only, whenever I do even small exertions, like unloading the

>dishwasher and such.  Does this happen to anyone else?

>

>I thought it might be related to prednisone,  but I've had this sweating

>even when I don't take it.

>Any ideas anyone?

>

>Blessings to all,

>Holly

>*Holly *

>*

>*

>*Holly Dorst*

>*Compassionate Help with Difficult Issues*

>*1050 N 3rd St., Ste B2*

>*Laramie, WY  82072*

>**

>*

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Hi a, I hope the pred. is starting to act as a leveller for you by now. How

are you getting on? I think it's really positive that you are able to identify

the signs of a flare - so hard to just STOP, I know, but hopefully you caught

it. The throat, the throat...oh, the bain of my life. We have an over the

counter throat tablet here in the UK called Tyrocet - it has a mild anesthetic

in it. I wonder if you have anything similar? It definitely helps, plus a lot

of fluids. Right behind on what she says re the lightheadedness. You'll

keep an eye on that, right? Best wishes, Francesca

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Holly,

The best of wishes for the pain appointment! You will know how you feel when

you meet the doctor I think. I think it is concerning that your doctor

doesn't think your disease warrants any pain management medication. I

realize there are different techniques of pain management and have used them

also for years but medications have been necessary for me to function as

well. Here in California we have a patients bill of rights and part of that

says a person has the right to live in a certain amount of comfort. That is

paraphrasing but close enough. I believe if someone hasn't shown a problem

taking medications they should be given the opportunity to use what is

available. It's only compassionate.

I have had night sweats for years when I had fevers break but then a few

years ago without a change in medications I started having the symptoms you

are describing of such extreme sweating about the head and face when

shopping or out that people were always seriously concerned. Even strangers.

I started having to carry something to mop up the sweat. No doctors could

ever tell my why except the medication answer. for some reason it went away

and I've just had it return one summer since. I just try to always have

liquids with me, even in stores and say it's for medical reasons if called

on it to make sure I stay hydrated.

Let us know how it goes will you?

Smiles for your day,

-----Original Message-----

From: Holly Dorst

I am FINALLY going to see the new doc at the Pain Clinic tomorrow..

My doc stopped prescribing pain meds for me last month,

She decided that

Still's disease is not painful, and that MS, which I also have 'only causes

pain in a small percentage of the population.' WRONG!

But, what I wanted to ask everyone is about unusual sweating. I sweat from

my head only, whenever I do even small exertions,

Does this happen to anyone else?

Any ideas anyone?

Blessings to all,

Holly

*Holly *

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Holly,

The best of wishes for the pain appointment! You will know how you feel when

you meet the doctor I think. I think it is concerning that your doctor

doesn't think your disease warrants any pain management medication. I

realize there are different techniques of pain management and have used them

also for years but medications have been necessary for me to function as

well. Here in California we have a patients bill of rights and part of that

says a person has the right to live in a certain amount of comfort. That is

paraphrasing but close enough. I believe if someone hasn't shown a problem

taking medications they should be given the opportunity to use what is

available. It's only compassionate.

I have had night sweats for years when I had fevers break but then a few

years ago without a change in medications I started having the symptoms you

are describing of such extreme sweating about the head and face when

shopping or out that people were always seriously concerned. Even strangers.

I started having to carry something to mop up the sweat. No doctors could

ever tell my why except the medication answer. for some reason it went away

and I've just had it return one summer since. I just try to always have

liquids with me, even in stores and say it's for medical reasons if called

on it to make sure I stay hydrated.

Let us know how it goes will you?

Smiles for your day,

-----Original Message-----

From: Holly Dorst

I am FINALLY going to see the new doc at the Pain Clinic tomorrow..

My doc stopped prescribing pain meds for me last month,

She decided that

Still's disease is not painful, and that MS, which I also have 'only causes

pain in a small percentage of the population.' WRONG!

But, what I wanted to ask everyone is about unusual sweating. I sweat from

my head only, whenever I do even small exertions,

Does this happen to anyone else?

Any ideas anyone?

Blessings to all,

Holly

*Holly *

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