Re: Remissions? Hello from a new Stilligan

[Guest guest]

Hello Tim welcome to Stilligans Island.If your still getting rash,fevers i

would not consider that remission,your rhumy must be lookin at bloodwork

huh.Many here still feel terrible even though there bloodwork looks

normal,we all know well the dreaded You Look Good Syndrome lol.I hope you

are in remission but i think i would have to qeustion it also,take

care. d.Canada

Remissions? Hello from a new Stilligan

>

>

> Hi everyone!

>

> My name is Tim Hirst an I live in Huddersfield, West Yorkshire in

> the good old UK. At 20, I was diagnosed with AOSD in early 1998

> following severe viral infections; swollen hips, knees and

> shoulders; spiking 8pm fevers; night sweats and a loss of 20% of my

> weight in only a month.

>

> I gradually got better thanks to short, intensive (50mg) doses of

> Prednisolene and eventually MTX. In fact I was fortunate to only be

> on one tablet of 30mg of MTX a week at the start of 2000, totally

> pain free and wondering if it all had been a bad dream! We then

> discovered that my Liver Function test had gone through the roof and

> after a liver biopsy, my rhumey suggested that to continue with MTX

> would mean my liver resembling that of a chronic alcoholic.

>

> So we stopped the MTX (and all the folic acid - ever notice the

> constant thirst?) and I had a whole year in remission and drug

> free.

>

> But then in Easter 2001 I woke in the night with a familar smell.

> Don't know about you guys but with my experience, the combo of the

> rash and the night sweats seem to give off a unique odour. No

> matter how many times you shower each day, or change the sheets

> every day you have the same problem. Not good!

>

> So back to hospital (7 weeks this time - onenotable thing was

> finding www.stillsdisease.org on my rhemys laptop and I have taken

> till now to get broadband and join) and we tried MTX again, but with

> the same problem of high LFT's. So, we tried 800mg of Azathioprine

> each day which seems to keep the sweats, rash and fever minimal, but

> causes tired and swollen joints. I stabled on 30mg of Pred, but had

> to stop taking this when they found that all the sugar in the

> steroids had made me into a type-2 diabetic and had caused 6 of my

> toe nails to swell so bad that they have been permanently removed.

>

> Since Jan 2003 the rhemeys are satisfied enough that I am in

> remission, but are unlikely to change all the meds now i am stable.

> This brings me to back to the title of this post - " remission " feels

> rather odd and is very much a day to day thing, with shorter

> episodes of rashes, sweats, joint swellings and temperatures and

> although i'm better, i'm still sick. Any views?

>

> Anyway, you've heard quite enough of me for now. It's really great

> to share with others experiencing similar issues and I don't feel

> like " Patient X " anymore.

>

> Cheers!

>

> Tim Hirst

> trhirst@...

>

>

>

>

>

>

> Visit the Still's Disease Message Board

> http://disc.server.com/Indices/148599.html

>

> The materials and information contained in this message are not intended

> to replace the services of a trained health professional or to be a

> substitute for medical advice of physicians and/or other health care

> professionals. The International Still's Disease Foundation is not engaged

> in rendering medical or professional medical services. You should consult

> your physician on specific medical questions, particularly in matters

> requiring diagnosis or medical attention. The International Still's

> Disease Foundation makes no representations or warranties with respect to

> any treatment, action, application, medication or preparation by any

> person following the information offered or provided within this support

> form.

>

> ion by any person following the information offered or provided within

> this support form.

>

>

>

[Guest guest]

Please talk proper english

Rgds, Steve

-----Original Message-----From: Docken Sent: 07 November 2004 19:11To: Stillsdisease Subject: Re: Remissions? Hello from a new StilliganHello Tim welcome to Stilligans Island.If your still getting rash,fevers i would not consider that remission,your rhumy must be lookin at bloodwork huh.Many here still feel terrible even though there bloodwork looks normal,we all know well the dreaded You Look Good Syndrome lol.I hope you are in remission but i think i would have to qeustion it also,take care. d.Canada Remissions? Hello from a new Stilligan>>> Hi everyone!>> My name is Tim Hirst an I live in Huddersfield, West Yorkshire in> the good old UK. At 20, I was diagnosed with AOSD in early 1998> following severe viral infections; swollen hips, knees and> shoulders; spiking 8pm fevers; night sweats and a loss of 20% of my> weight in only a month.>> I gradually got better thanks to short, intensive (50mg) doses of> Prednisolene and eventually MTX. In fact I was fortunate to only be> on one tablet of 30mg of MTX a week at the start of 2000, totally> pain free and wondering if it all had been a bad dream! We then> discovered that my Liver Function test had gone through the roof and> after a liver biopsy, my rhumey suggested that to continue with MTX> would mean my liver resembling that of a chronic alcoholic.>> So we stopped the MTX (and all the folic acid - ever notice the> constant thirst?) and I had a whole year in remission and drug> free.>> But then in Easter 2001 I woke in the night with a familar smell.> Don't know about you guys but with my experience, the combo of the> rash and the night sweats seem to give off a unique odour. No> matter how many times you shower each day, or change the sheets> every day you have the same problem. Not good!>> So back to hospital (7 weeks this time - onenotable thing was> finding www.stillsdisease.org on my rhemys laptop and I have taken> till now to get broadband and join) and we tried MTX again, but with> the same problem of high LFT's. So, we tried 800mg of Azathioprine> each day which seems to keep the sweats, rash and fever minimal, but> causes tired and swollen joints. I stabled on 30mg of Pred, but had> to stop taking this when they found that all the sugar in the> steroids had made me into a type-2 diabetic and had caused 6 of my> toe nails to swell so bad that they have been permanently removed.>> Since Jan 2003 the rhemeys are satisfied enough that I am in> remission, but are unlikely to change all the meds now i am stable.> This brings me to back to the title of this post - "remission" feels> rather odd and is very much a day to day thing, with shorter> episodes of rashes, sweats, joint swellings and temperatures and> although i'm better, i'm still sick. Any views?>> Anyway, you've heard quite enough of me for now. It's really great> to share with others experiencing similar issues and I don't feel> like "Patient X" anymore.>> Cheers!>> Tim Hirst> trhirst@...>>>>>>> Visit the Still's Disease Message Board> http://disc.server.com/Indices/148599.html>> The materials and information contained in this message are not intended > to replace the services of a trained health professional or to be a > substitute for medical advice of physicians and/or other health care > professionals. The International Still's Disease Foundation is not engaged > in rendering medical or professional medical services. You should consult > your physician on specific medical questions, particularly in matters > requiring diagnosis or medical attention. The International Still's > Disease Foundation makes no representations or warranties with respect to > any treatment, action, application, medication or preparation by any > person following the information offered or provided within this support > form.>> ion by any person following the information offered or provided within > this support form.>>>

[Guest guest]

Steve, I think most of us have more things to deal with than to worry about using proper english. And for your Post to Lynn, well what exactly is Your point? There is no reason for you to be rude. Did you bother to read the rules of the list? Maybe you need a refresher. rule #1 put downs will not be tolerated.

[Guest guest]

If you have a problem email me privatly please!! d.Canada

Remissions? Hello from a new Stilligan>>> Hi everyone!>> My name is Tim Hirst an I live in Huddersfield, West Yorkshire in> the good old UK. At 20, I was diagnosed with AOSD in early 1998> following severe viral infections; swollen hips, knees and> shoulders; spiking 8pm fevers; night sweats and a loss of 20% of my> weight in only a month.>> I gradually got better thanks to short, intensive (50mg) doses of> Prednisolene and eventually MTX. In fact I was fortunate to only be> on one tablet of 30mg of MTX a week at the start of 2000, totally> pain free and wondering if it all had been a bad dream! We then> discovered that my Liver Function test had gone through the roof and> after a liver biopsy, my rhumey suggested that to continue with MTX> would mean my liver resembling that of a chronic alcoholic.>> So we stopped the MTX (and all the folic acid - ever notice the> constant thirst?) and I had a whole year in remission and drug> free.>> But then in Easter 2001 I woke in the night with a familar smell.> Don't know about you guys but with my experience, the combo of the> rash and the night sweats seem to give off a unique odour. No> matter how many times you shower each day, or change the sheets> every day you have the same problem. Not good!>> So back to hospital (7 weeks this time - onenotable thing was> finding www.stillsdisease.org on my rhemys laptop and I have taken> till now to get broadband and join) and we tried MTX again, but with> the same problem of high LFT's. So, we tried 800mg of Azathioprine> each day which seems to keep the sweats, rash and fever minimal, but> causes tired and swollen joints. I stabled on 30mg of Pred, but had> to stop taking this when they found that all the sugar in the> steroids had made me into a type-2 diabetic and had caused 6 of my> toe nails to swell so bad that they have been permanently removed.>> Since Jan 2003 the rhemeys are satisfied enough that I am in> remission, but are unlikely to change all the meds now i am stable.> This brings me to back to the title of this post - "remission" feels> rather odd and is very much a day to day thing, with shorter> episodes of rashes, sweats, joint swellings and temperatures and> although i'm better, i'm still sick. Any views?>> Anyway, you've heard quite enough of me for now. It's really great> to share with others experiencing similar issues and I don't feel> like "Patient X" anymore.>> Cheers!>> Tim Hirst> trhirst@...>>>>>>> Visit the Still's Disease Message Board> http://disc.server.com/Indices/148599.html>> The materials and information contained in this message are not intended > to replace the services of a trained health professional or to be a > substitute for medical advice of physicians and/or other health care > professionals. The International Still's Disease Foundation is not engaged > in rendering medical or professional medical services. You should consult > your physician on specific medical questions, particularly in matters > requiring diagnosis or medical attention. The International Still's > Disease Foundation makes no representations or warranties with respect to > any treatment, action, application, medication or preparation by any > person following the information offered or provided within this support > form.>> ion by any person following the information offered or provided within > this support form.>>>

[Guest guest]

???????

Remissions? Hello from a new Stilligan>>> Hi everyone!>> My name is Tim Hirst an I live in Huddersfield, West Yorkshire in> the good old UK. At 20, I was diagnosed with AOSD in early 1998> following severe viral infections; swollen hips, knees and> shoulders; spiking 8pm fevers; night sweats and a loss of 20% of my> weight in only a month.>> I gradually got better thanks to short, intensive (50mg) doses of> Prednisolene and eventually MTX. In fact I was fortunate to only be> on one tablet of 30mg of MTX a week at the start of 2000, totally> pain free and wondering if it all had been a bad dream! We then> discovered that my Liver Function test had gone through the roof and> after a liver biopsy, my rhumey suggested that to continue with MTX> would mean my liver resembling that of a chronic alcoholic.>> So we stopped the MTX (and all the folic acid - ever notice the> constant thirst?) and I had a whole year in remission and drug> free.>> But then in Easter 2001 I woke in the night with a familar smell.> Don't know about you guys but with my experience, the combo of the> rash and the night sweats seem to give off a unique odour. No> matter how many times you shower each day, or change the sheets> every day you have the same problem. Not good!>> So back to hospital (7 weeks this time - onenotable thing was> finding www.stillsdisease.org on my rhemys laptop and I have taken> till now to get broadband and join) and we tried MTX again, but with> the same problem of high LFT's. So, we tried 800mg of Azathioprine> each day which seems to keep the sweats, rash and fever minimal, but> causes tired and swollen joints. I stabled on 30mg of Pred, but had> to stop taking this when they found that all the sugar in the> steroids had made me into a type-2 diabetic and had caused 6 of my> toe nails to swell so bad that they have been permanently removed.>> Since Jan 2003 the rhemeys are satisfied enough that I am in> remission, but are unlikely to change all the meds now i am stable.> This brings me to back to the title of this post - "remission" feels> rather odd and is very much a day to day thing, with shorter> episodes of rashes, sweats, joint swellings and temperatures and> although i'm better, i'm still sick. Any views?>> Anyway, you've heard quite enough of me for now. It's really great> to share with others experiencing similar issues and I don't feel> like "Patient X" anymore.>> Cheers!>> Tim Hirst> trhirst@...>>>>>>> Visit the Still's Disease Message Board> http://disc.server.com/Indices/148599.html>> The materials and information contained in this message are not intended > to replace the services of a trained health professional or to be a > substitute for medical advice of physicians and/or other health care > professionals. The International Still's Disease Foundation is not engaged > in rendering medical or professional medical services. You should consult > your physician on specific medical questions, particularly in matters > requiring diagnosis or medical attention. The International Still's > Disease Foundation makes no representations or warranties with respect to > any treatment, action, application, medication or preparation by any > person following the information offered or provided within this support > form.>> ion by any person following the information offered or provided within > this support form.>>>