Re: Questions ... Fingers on the buzzer

[Guest guest]

HI Steve,

Don't have an answer to most of your questions but just wanted to

put in my two cents { ya, ya, it always ends up to be more like $5.

but..at least I am good looking} Ok, I think, compared to what

others describe I must have Still's lite. I hurt every day, but I

work full time, am the single mom of two kids, teach ccd and do art

shows. Now, again I repeat, I seem to have Stills lite. I am on

MTX and am down to 6mg of pred. My message is, this is my life with

Stills right now. Dan's is different, Caro's is different, Pat's is

different. Everyones is different. To me, it seems the one

constant I have found with the Stills is that it is different for

everyone {no, really, that sentance makes sense...I think.} We have

to constantly look for answers but we have to remember that Stils or

not, a bus could fall on our head tomorrow, or we could win the

lottery...we don't know whats next and thats what makes it

interesting. Trust that you'll never be given more than you can

take.

Did that help at all?

I really wish we would hear from Dave!!

Have a relatively non threatening day...

, G.otF.M. who is still dancing for joy for , out here

in Massachusetts.

[Guest guest]

Silly girl!!! I'm in the snowy mountains of Southern California ;0) And

yes, Steve, take what Cyn is saying to heart. As I posted in one of my

letters to you previously. I would have missed so very much if I hadn't

been here and I hope there is so much more to come!!! I love to laugh, be

happy and have people such as yourselves in my life. And I am dancing with

you Cyn, our goddess of love and laughter. Till soon with smiles, melt

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

From: " Lavallee " <cynthia@...>

> , G.otF.M. who is still dancing for joy for , out here

> in Massachusetts.

[Guest guest]

Hi Steve,

My longest remission was 15 years - totally drug and symptom free.

I'm currently in what I would call a drug maintained remission (fingers

crossed) and on only 2.5mg pred and 25mg Vioxx

Dunno about the other stuff, but yes it is a vicious circle as is the rest

of life! Nobody knows what their future holds and whilst you may be right

about the joint replacements etc (I've had both hips done as you know) that

is just one event - there's a whole lot of living to be done around it.

Stills will almost certainly always be a part of your life but it most

certainly doesn't have to be your life unless you choose to let it be. At

some points in your life Stills will play a bigger role than you might wish

and at other times you will be grateful for the human insight it has given

you....

Try not to focus on the negatives and what you see as the inevitable

horrors awaiting for you. Try and live your life and deal with all it's

events as and when they turn up, but don't waste your life worrying about it.

chat on msn soon,

Graham (35)

West Sussex

UK

At 12:39 24/02/2004, you wrote:

>Hi,

>

>It's Steve (a man of many questions) again.

>

>1. I often read on the internet that remission in Still's Disease is very

>rare (people seem to enjoy saying that if they don't have the illness!) -

>so I'd like to know how many people here have experienced a remission. I

>have had 2 remissions but it keeps coming back.

>

>1.1 Has anybody had a remission that has been longer than the previous

>remission.

>

>1.2 Were you in drug-induced remission or did you completely come off all

>drugs?

>

>====

>

>2. How long does it take before joints and organs become permanently

>damaged. I guess this depends on each person but I just mean typically.

>

>It seems a vicious circle to me .... your joints become damaged so they

>need replacing ... and the illness then just comes along and does the same

>thing to all the remaining joints/organs.

>

>===

>

>3. Has anybody tried natural remedies and has anything worked? I started

>taking Turmeric, Glucosomine Sulphate, Fish Oil + vitamin supplements a

>few weeks ago and I'm sure I've noticed a difference - yet CRP is yet to

>come down.

>

>===

>

>

>To be honest, I am only 24 and I see a bright future .... pain, hospital

>visits, joint replacements, organ failure .... Pesimistic I know but it's

>very hard to get my head around it all. There doesn't seem to be much

>progress with this sort of disease.

>

>Joking aside, I know I won't live my life like this forever ... I'll give

>the big man upstairs a chance but then I'll be stepping in and finishing

>things.

>

>

>Steve

[Guest guest]

Hi Steve,

I did have a period of remission from about 1994 to the end of 1996. During this time I was on plaquenil, then on only 2mg of pred daily. I didn't feel completely back to my old self, mainly i got tired out more easily. But I didn't have joint swellings, pain, etc. Dec 96 I had a bad flare-up (got married in Oct 96, could there be a connection :-) and since then it's been up and down. But, I also have the bad headaches and some fibro-like symptoms, so it's sometimes hard to determine what exactly is causing my problems. For me, each subsequent flare-up has been less intense than the previous one. Since the one in 1996, my blood work has been pretty good even though I've had some minor joint swelling, pain and fatigue.

Anyway, one thing I wish I'd done when I was feeling better is to get myself in better shape. I used to walk about 20-30 minutes a day regularly and think this really made a difference. I think part of why I am so fatigued and have some problems now is that my body is just so out of shape. I know lots of times it is impossible to exercise, but will try to start again when I'm able.

I'm not sure on how long it take for joints or organs to become damaged. I think you're right that it depends on the person. I do remember one rheumy telling me that joint damage usually occurs first in the hands/fingers. Don't know if anyone else heard this? Of course, it is not a certainty that the Stills will damage any joints or organs. I have a friend who's had lupus for over 20 years. Despite being very sick for many years (she nearly died several times), she now works full-time and has no lasting joint deformities or organ damage. Guess we can never predict how things will turn out!

As far as supplements, I probably mentioned this before but not sure... one thing I took that made a difference was chromium. It helped with a lot of the muscle pain & soreness. Have you ever tried relaxation or biofeedback? I went for biodfeedback and neuorfeedback sessions to help my headaches. Didnt' get rid of them like i was hoping, but definitely helped. Also really helped in other ways..... my head felt "clearer" and I've learned to incoroporate the relaxation breathing into my every day life. Helped me to deal with mood swings from the pred, stress, pain in general, and stuff like that. The sessions were covered by my insurance and I went to a physical therpay - rehabilitation center for them. They were given by a physcologist who specialized in chronic pain patients.

This is probably way more than you wanted to know, but hope it helps!

Trish in PA

[Guest guest]

-Hi Steve, YES, I was on many drugs at first but then was able to

wean off of everything except the MTX injections, After about 2

years on it I came off everything I wanted to come off the mtx and

see what happens I told my rhemy. I was off everything for a good 7-

8 years!!!! then started to flare alittle and started back on nsaid

(bextra,celebrex,relefin(I think) etc. Its only been the last 2

years that I have been flaring and although things are better I am

still flaring off and on. I am on mtx injections 20mg weekly and

remicade infussion every 5 weeks. So you see I have had stills for

15 1/2 years and had a couple good remisssions. Please dont give

up!! Try to be good to yourself when you have a good hour, even if

its not a full day. I hope the best for you and I know there will

the light at the end of the tunnel soon for you. I'm not sure how

long it been for you since you started this dragon, but please

remember there is always hope and lots of new drugs to help all of

us, its just trying to find the right one. I hope your rhemy is

supported of you and is aggressive in your treatment, I really do

feel that if my rhemy was not aggressive in my treatment I would be

having a lot of degeneration to my bones. I have minimal, thanks to

him. I know you are young, I was 37 and had 3 children at the time,

so I know where you are coming from a little. Try not to dwell on

the future try to hang in there each day, I will keep you in my

thoughts and prayers.

take care,

love Pat from MA

-- In Stillsdisease , " "

<stevo.clark@n...> wrote:

> Hi,

>

> It's Steve (a man of many questions) again.

>

> 1. I often read on the internet that remission in Still's Disease

is very

> rare (people seem to enjoy saying that if they don't have the

illness!) - so

> I'd like to know how many people here have experienced a

remission. I have

> had 2 remissions but it keeps coming back.

>

> 1.1 Has anybody had a remission that has been longer than the

previous

> remission.

>

> 1.2 Were you in drug-induced remission or did you completely come

off all

> drugs?

>

> ====

>

> 2. How long does it take before joints and organs become

permanently

> damaged. I guess this depends on each person but I just mean

typically.

>

> It seems a vicious circle to me .... your joints become damaged so

they need

> replacing ... and the illness then just comes along and does the

same thing

> to all the remaining joints/organs.

>

> ===

>

> 3. Has anybody tried natural remedies and has anything worked? I

started

> taking Turmeric, Glucosomine Sulphate, Fish Oil + vitamin

supplements a few

> weeks ago and I'm sure I've noticed a difference - yet CRP is yet

to come

> down.

>

> ===

>

>

> To be honest, I am only 24 and I see a bright future .... pain,

hospital

> visits, joint replacements, organ failure .... Pesimistic I know

but it's

> very hard to get my head around it all. There doesn't seem to be

much

> progress with this sort of disease.

>

> Joking aside, I know I won't live my life like this forever ...

I'll give

> the big man upstairs a chance but then I'll be stepping in and

finishing

> things.

>

>

> Steve