Re: My situation - help please

[Guest guest]

Hi Steve. I am in the similar boot to you. I have been on the Pred for almost two years now. It is true that it is a bad for you, but sometimes you need it to help you get through this. I do take extra calcuim and that does seem to help as my bone scans and dr's have told me. I am unsure of the Infliximab as I have never heard of it, but maybe someone else here has. I have yet to see a remission but I try to go on with my life a little slower and now what my limits are so I am not as bad off. My labs are still high as well but seem to be coming down some. I hope this helps you some.

Kelley in Colorado

[Guest guest]

Steve,

I was sick for almost three years before I got any type of relief. Also, I was on high doses of steroids. Anytime I have tried to go roid free, a couple of months and the disease returns.

In addition I have asthma and COPD and I have to take prednisone for that too. My pulmonologist told me that a low dosage of pred for the rest of my life isn't going to hurt me in the long run. So, I stay basically on 5 mgs a day, unless of course I have a lot of swelling or a flare comes on or if my lungs decide to whistle like dixie. LOL. Sometimes I even forget to take it and actually take it every other day.

Be careful though. Never come off of roids immediately. Pred makes the adrenal glands surpressed in their function. If you attempt to come off of them to quickly you can put yourself in serious danger.

Try to be patient. I know that's hard sometimes, but you will find once all of your meds kick in and they find the right combination, you will start getting better.

You are not alone my friend. OBTW, I didn't get out of bed for two years. They even had a bedside commode at the bedside edge. I'm up running around like a fool now. It does get better. It takes time. Hope this helps you some.

Much love,

Terry

[Guest guest]

Hi Steve....

A little scenario here for a bit....

A trip to the E.R..... 240mgs. of Pred.

Home after three days starting on 120 mgs.

Then down to 80mgs.

Then 60

Then 40

Then ten by ten for about a month of so until I got to 20mgs. where I stayed for ages. Probably close to a year. If I went under that, back in bed I went. Soooooo, I decided to reduce more with my doctor's okay. It took over a year to get off Pred for good. I have had instances where I've had to go back up to 40mgs but only for a few days and then reduced slowly again but back to zero in a couple of weeks.

I don't know what to tell you except that it just might take longer than you think to get off this horrible drug. Just keep trying......

Mi. Carmen

[Guest guest]

Hi Steve

I'm one of those who came down fairly quickly off Prednisolone, but

only because I hadn't been on it for long. The longer you have been on

it, the longer it takes to come off. On 30 mg, I felt like super woman.

Anything under 15 mg and it wasn't worth me continuing, so the doc said

I could wean off it, unless I was prepared to go back up. After a lot

of thought, I decided to reduce the dose and it took me a couple of

months to come off. Now I've started on hydroxchloroquine, which has

fewer side effects, but takes months to kick in. I felt happier to go

this route for now. I take Tramadol, which takes away the fluey

feelings and the ever present aches. I can't comment on the other drugs

you mention as I've never taken them, although I'm sure many others can

help you there.

Don't despair. And I don't think there's too much point in panicing

about the side effects, although it is important to weigh up the pros

and cons. Is your doc helpful if you see him and talk? Anyway,

hopefully that's where this group can help.

All the best

C 2 (UK)

> Hi all.

>  

> Is it me or am one of the only people who have Still's bad?

>  

> I'm not being funny but lots of posts I read says about people quickly

> coming down off Pred - being on a high dose but before long they are

> down to hardly anything.

>  

> I have been on 20mg of Pred for almost a year now ... I am also on

> Cyclophosphamide (chemo) and I am also on Sulfasalazine. My CRP has

> been down to 42 but during flares it rises to over 100.

>  

> Honestly is there anybody who is in a similar boat to me? I am 24

> years old and although my aches are not too bad I just can't get my

> blood results down enough to come down off the steroids. Now I'm

> reading about the side effects to Pred and it's making me feel 10

> times worse!

>  

> It's a lose lose situation for me ... I need the Pred but from what I

> read its worse than the illness! What should I do? ... come down off

> the Pred regardless of whether I feel worse or not!?

>  

> Also is Infliximab very dangerous? My doc says it is but I don't know

> who to trust to be honest.

>  

> Steve

>

>

> 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]

Hi .

Inflixmab is also called Remicade ... does this help?

Steve

-----Original Message-----From: Kelleyak31@... Sent: 16 July 2004 17:42To: Stillsdisease Subject: Re: My situation - help please

Hi Steve. I am in the similar boot to you. I have been on the Pred for almost two years now. It is true that it is a bad for you, but sometimes you need it to help you get through this. I do take extra calcuim and that does seem to help as my bone scans and dr's have told me. I am unsure of the Infliximab as I have never heard of it, but maybe someone else here has. I have yet to see a remission but I try to go on with my life a little slower and now what my limits are so I am not as bad off. My labs are still high as well but seem to be coming down some. I hope this helps you some.

Kelley in Colorado Visit the Still's Disease Message Boardhttp://disc.server.com/Indices/148599.htmlThe 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]

Hi Caroline,

Can hydroxchloroquine be taken instead of Pred? I've never heard my doctor mention it to me.

Steve

-----Original Message-----From: Caroline Baylis Sent: 16 July 2004 17:50To: Stillsdisease Subject: Re: My situation - help pleaseHi SteveI'm one of those who came down fairly quickly off Prednisolone, but only because I hadn't been on it for long. The longer you have been on it, the longer it takes to come off. On 30 mg, I felt like super woman. Anything under 15 mg and it wasn't worth me continuing, so the doc said I could wean off it, unless I was prepared to go back up. After a lot of thought, I decided to reduce the dose and it took me a couple of months to come off. Now I've started on hydroxchloroquine, which has fewer side effects, but takes months to kick in. I felt happier to go this route for now. I take Tramadol, which takes away the fluey feelings and the ever present aches. I can't comment on the other drugs you mention as I've never taken them, although I'm sure many others can help you there.Don't despair. And I don't think there's too much point in panicing about the side effects, although it is important to weigh up the pros and cons. Is your doc helpful if you see him and talk? Anyway, hopefully that's where this group can help.All the bestC 2 (UK)

Hi all. Is it me or am one of the only people who have Still's bad? I'm not being funny but lots of posts I read says about people quickly coming down off Pred - being on a high dose but before long they are down to hardly anything. I have been on 20mg of Pred for almost a year now ... I am also on Cyclophosphamide (chemo) and I am also on Sulfasalazine. My CRP has been down to 42 but during flares it rises to over 100. Honestly is there anybody who is in a similar boat to me? I am 24 years old and although my aches are not too bad I just can't get my blood results down enough to come down off the steroids. Now I'm reading about the side effects to Pred and it's making me feel 10 times worse! It's a lose lose situation for me ... I need the Pred but from what I read its worse than the illness! What should I do? ... come down off the Pred regardless of whether I feel worse or not!? Also is Infliximab very dangerous? My doc says it is but I don't know who to trust to be honest. SteveVisit the Still's Disease Message Boardhttp://disc.server.com/Indices/148599.htmlThe 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]

The other name is Plaquenil. It's commonly used for Lupus, RA etc. It's

an anti malarial. Apparently it reduces disease activity and

inflammation. It isn't a pain killer. Side effects include stomach

cramps and reduces appetite. I got a rotten stomach ache when I

started, but now I split the dose between morning and evening and

always take with food, which has made a big difference. It can also

cause eye problems (but very rarely) and as a precaution, you have to

have regular eye checks.

I've been ill for 2 years, although I can trace similar problems which

I am sure were all part of this as long as 15 years ago, so maybe I've

had a great long period of remission. This drug was only mentioned to

me recently and I have everything crossed that it works, as so far,

only the steroids has made any difference, and I'd rather not remain on

that longer than I have too, although it's good to know I can take it

and feel better if I need too. Heaven knows I could have run a marathon

on the stuff!

Love

C 2

> Hi Caroline,

>  

> Can hydroxchloroquine be taken instead of Pred? I've never heard my

> doctor mention it to me.

>  

> Steve

>  

>  

>

>

>

> 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;

Too many have Stills real bad and often that is when they can't or don't post for a while. I'm going to sound like an old woman again and say "In the early days", lol I had to be on Prednisone for the first few years while different drugs were tried. That was before all the new ones. It was when gold shots and Prednisone were about the only options. After 8 months of weekly gold shots we found that didn't work and so it really was a game of balance. My SED rates were well over 500, yes, in those days. I learned that even to cry sent my fevers to 105 and learned that many emotional things trigger symptoms far beyond what something physical does. For me the new drug that came out was D-Pennacillamine and that drug took me to remission. Not over night but eventually it helped.

Now going on well over 20 years I am diagnosed in remission and just take my naprosyn on a daily basis.

My advise is to find the simplest things you can that give you joy, peace and love. Don't go by anyone else's schedules of what works because it will not be the same for you. As someone said, remember the children for your strength of purpose and always remember you are not alone. Some one will always care.

Many smiles for your days, Pattymelt

P.S. I'm dancing this weekend

My situation - help please

Hi all.

Is it me or am one of the only people who have Still's bad?

I'm not being funny but lots of posts I read says about people quickly coming down off Pred - being on a high dose but before long they are down to hardly anything.

I have been on 20mg of Pred for almost a year now ... I am also on Cyclophosphamide (chemo) and I am also on Sulfasalazine. My CRP has been down to 42 but during flares it rises to over 100.

Honestly is there anybody who is in a similar boat to me? I am 24 years old and although my aches are not too bad I just can't get my blood results down enough to come down off the steroids. Now I'm reading about the side effects to Pred and it's making me feel 10 times worse!

It's a lose lose situation for me ... I need the Pred but from what I read its worse than the illness! What should I do? ... come down off the Pred regardless of whether I feel worse or not!?

Also is Infliximab very dangerous? My doc says it is but I don't know who to trust to be honest.

SteveVisit the Still's Disease Message Boardhttp://disc.server.com/Indices/148599.htmlThe 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]

Caroline,

I too am also on the Plaquenil. I have much the same side effects, but after a time it does go away the tummy cramps that is. However, the loss of appetite is one to stay I do believe. And I hope to get rid of the roids by the end of the year but not banking on that one.

In fact my RD uses it as a first line of defense in combating Still's and RA so I am hoping it works. I ran short the other day and I missed a dose and boy oh boy I did feel the difference of not having it on board. Thankfully the pharmacy was just down the road a bit and hubby could go get right away. We both fell down on checking the numbers left on my meds.

Hugs and Good luck with the Plaquenil.

Tracilyn

[Guest guest]

I have been on Plaquenil for the last 7 years - 200 mg twice a day. For me I remember the side effects going away after the first several months and after that they had no ill effects. It really worked for me over that period of time. It was only this past April where I've had a flare so bad that I'm back on the pred. and have had to start MTX along with the Plaquenil. I hope to someday be able to get off the pred and MTX and manage things with the plaquenil alone again. I hope you have as good luck with the Plaquenil as I did.

Peggy

RE: My situation - help please

Caroline,

I too am also on the Plaquenil. I have much the same side effects, but after a time it does go away the tummy cramps that is. However, the loss of appetite is one to stay I do believe. And I hope to get rid of the roids by the end of the year but not banking on that one.

In fact my RD uses it as a first line of defense in combating Still's and RA so I am hoping it works. I ran short the other day and I missed a dose and boy oh boy I did feel the difference of not having it on board. Thankfully the pharmacy was just down the road a bit and hubby could go get right away. We both fell down on checking the numbers left on my meds.

Hugs and Good luck with the Plaquenil.

Tracilyn

Visit the Still's Disease Message Boardhttp://disc.server.com/Indices/148599.htmlThe 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]

Hi lin,

How long before it started to work?

C 2

> Caroline,

> I too am also on the Plaquenil.  I have much the same side effects,

> but after a time it does go away the tummy cramps that is. However,

> the loss of appetite is one to stay I do believe.  And I hope to get

> rid of the roids by the end of the year but not banking on that one. 

>  

> In fact my RD uses it as a first line of defense in combating Still's

> and RA so I am hoping it works. I ran short the other day and I missed

> a dose and boy oh boy I did feel the difference of not having it on

> board.  Thankfully the pharmacy was just down the road a bit and hubby

> could go get right away. We both fell down on checking the numbers

> left on my meds.

>  

> Hugs and Good luck with the Plaquenil. 

>  

> Tracilyn

>  

>  

>  

>

>

>

>  

>

>

> 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]

Caroline,

I started to notice a change in my syptoms in a litte over a month mark,but I I had the flare up caused from the exhaustion and such from the trip west I had to make. But they say it will take at least 4months to 6months to see a difference.

I notice it now when I miss a dose the symptoms kind of raise their ugly heads a bit. So be a ware of that part if you run out or miss a dose, you will notice a difference in them. And that alone will tell you how well it's doing.

Tracilyn

[Guest guest]

Hi Steve,

I was on prednisone for way over a year. There are some of us that almost forever take prednisone. It took me a long long time of SLOWLY decreasing the prednisone to be able to stop taking it. I still take MTX but no prednisone. I do thiink your doctor should probably have you do a bone scan test while taking prednisone. My Rheumy had me do the bone scan tests, and had me taking that Fosamax pills. It stopped me from having a lot of bone loss, and actually improved my bone density.

Hope your Doc can get you fixed up with whatever it takes to get you feeling better.

Dan

My situation - help please

Hi all.

Is it me or am one of the only people who have Still's bad?

I'm not being funny but lots of posts I read says about people quickly coming down off Pred - being on a high dose but before long they are down to hardly anything.

I have been on 20mg of Pred for almost a year now ... I am also on Cyclophosphamide (chemo) and I am also on Sulfasalazine. My CRP has been down to 42 but during flares it rises to over 100.

Honestly is there anybody who is in a similar boat to me? I am 24 years old and although my aches are not too bad I just can't get my blood results down enough to come down off the steroids. Now I'm reading about the side effects to Pred and it's making me feel 10 times worse!

It's a lose lose situation for me ... I need the Pred but from what I read its worse than the illness! What should I do? ... come down off the Pred regardless of whether I feel worse or not!?

Also is Infliximab very dangerous? My doc says it is but I don't know who to trust to be honest.

SteveVisit the Still's Disease Message Boardhttp://disc.server.com/Indices/148599.htmlThe 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]

Caroline I do hope tomorrow is a better day for you. You will be in my thoughts today. Find that snugly place and rest up.

Much love, Melt

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

From: Caroline Baylis I still feel REALLY sick. Today's been one of those days and I've felt dreadful. Hope tomorrow's better. C 2

[Guest guest]

Thank you Melt. It's really hot and humid today - well, by our

standards anyway - but I'm wrapped up in a jumper and have my

sheepskin winter Ugg boots on, while the children run around in shorts.

Tomorrow is the start of the school holidays, so I aim for complete

recovery when I wake up in the morning. Fingers crossed...!

Love to all

C 2

> Caroline I do hope tomorrow is a better day for you.  You will be in

> my thoughts today.  Find that snugly place and rest up.

> Much love, Melt

> ----- Original Message -----

> From: Caroline Baylis

> I still feel REALLY sick. Today's been one of those days and I've felt

> dreadful. Hope tomorrow's better. C 2

>

>  

>

>

> 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]

;

Its hard to say what is best since you are in another country and I don't know if you can change doctors or they are appointed to you.

The last four years I was taking Sulfasalazine and it helped but my arthritis wasn't that bad. Some here at the group do take it and it helps them. My current rheumatologist said though that if I needed something there were more effective medications available. I think it just really depends on each individual. I wish you the best results and that maybe someday you will be in remission and not need anything.

smiles for your day, Pattymelt

My situation - help please

Hi all.

Is it me or am one of the only people who have Still's bad?

I'm not being funny but lots of posts I read says about people quickly coming down off Pred - being on a high dose but before long they are down to hardly anything.

I have been on 20mg of Pred for almost a year now ... I am also on Cyclophosphamide (chemo) and I am also on Sulfasalazine. My CRP has been down to 42 but during flares it rises to over 100.

Honestly is there anybody who is in a similar boat to me? I am 24 years old and although my aches are not too bad I just can't get my blood results down enough to come down off the steroids. Now I'm reading about the side effects to Pred and it's making me feel 10 times worse!

It's a lose lose situation for me ... I need the Pred but from what I read its worse than the illness! What should I do? ... come down off the Pred regardless of whether I feel worse or not!?

Also is Infliximab very dangerous? My doc says it is but I don't know who to trust to be honest.

SteveVisit the Still's Disease Message Boardhttp://disc.server.com/Indices/148599.htmlThe 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. Visit the Still's Disease Message Boardhttp://disc.server.com/Indices/148599.htmlThe 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. Visit the Still's Disease Message Boardhttp://disc.server.com/Indices/148599.htmlThe 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, could you ask your doc specifically what he means by infliximab being dangerous? I didnt think that it would be any more dangerous than the cyclophosamide. Also my doc adjusted me meds more on how I felt, pain wise, stiffness etc than relying on bloodwork. The CRP and sed rate are non specific. Stills may not be the only thing causing the crp to remain high. If you injure yourself, cause a sprain, your crp will rise, it reacts to tissue injury, infection, inflammation anywhere. There are people out there with elevated sed rates and crp and dont have stills, ra or any other problem.

Sulfasalazine probably isnt one of the best meds to use for stills, sometimes it can cause more problems with the rash and induce vasculitis. What about the other tnf drugs or kineret? has he tried those?

Jen

[Guest guest]

Hi.

I haven't been on for a long time but I think You mean Cpk And sed rate. I had cpk in the 4,000 when I first got sick .They can break the cpk into 3 sections.heart.skelateal muscle,And brain function. If your cpk is high with cheast pains etc.this could very much signal a Heart attack.They use high heart muscle cpk as a very reliable signal for heart attack. Muscle can be pain or inflamation or even to much phsical exercise can cause high muscle skeletal cpk. And head trama as brain damage with those symtoms and a high cpk. Not trying to be to smart but have had so much experience with cpks..THe Labratory takes symtoms to break down which part of the body is causing the high cpk. Sed rate is from inflamation that can come from anywhere thats where they have to use other tests and diagnostic tools. I hope I did not confuse anyone on that , my high cpks were one of my first symtoms with extremly painful mucsles. Then the high sed rates 10 years ago.

Dottie from Hawaii,Aloha

[Guest guest]

ALso meant to put what it means it is a measurement to find out if there is an elevated muscle in the heart ,brain or skeletal muscle.it measures the enzymes in this blood test called Creatine phosphokinase the eymzymes are mostly found in these 3 areas .There is quit a bit of infor mation on it under cpk.

Aloha,Dottie

[Guest guest]

Good to see you Dotti;

Hope you are doing well.

Smiles Melt

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

From: twckzmbg@...

[Guest guest]

Hi Steve,

I know this mail was addressed to Caroline, but I took hydroxychloroquine (aka plaquenil) for several years so thought I'd add my 2 cents (my apologies for being late in doing so....lol). When my Stills was at its worst, I started on plaquenil. (This was before enbrel, remicade, etc.). I was also on about 20mg of pred at the time. The plaq worked great for me, took about 2 months to see a real improvement but it did allow me to eventually reduce the pred dose slowly to 2mg a day. I didn't really have any side effects from it, except for a slight loss of appetite and a little stomach upset when I started on it, which went away. A related drug (chloroquine) can cause eye problems so if you take plaq, you need to have eye exams and a visual field test (no big deal) every 6 to 12 months. Both my rheumy and eye doc said eye problems from plaq are extremely rare and neither had ever known of anyone to have them. Even though I didnt have insurance coverage for eye care, my medical insurance paid for these eye exams since they were related to a medical problem.

Hope this is helpful and my apologies if others have already given you this info. (Have tried to read most of the mail lately, but unfortunately have had to skim and delete some.)

Trish in PA

RE: My situation - help please

Hi Caroline,

Can hydroxchloroquine be taken instead of Pred? I've never heard my doctor mention it to me.

Steve

-----Original Message-----From: Caroline Baylis Sent: 16 July 2004 17:50To: Stillsdisease Subject: Re: My situation - help pleaseHi SteveI'm one of those who came down fairly quickly off Prednisolone, but only because I hadn't been on it for long. The longer you have been on it, the longer it takes to come off. On 30 mg, I felt like super woman. Anything under 15 mg and it wasn't worth me continuing, so the doc said I could wean off it, unless I was prepared to go back up. After a lot of thought, I decided to reduce the dose and it took me a couple of months to come off. Now I've started on hydroxchloroquine, which has fewer side effects, but takes months to kick in. I felt happier to go this route for now. I take Tramadol, which takes away the fluey feelings and the ever present aches. I can't comment on the other drugs you mention as I've never taken them, although I'm sure many others can help you there.Don't despair. And I don't think there's too much point in panicing about the side effects, although it is important to weigh up the pros and cons. Is your doc helpful if you see him and talk? Anyway, hopefully that's where this group can help.All the bestC 2 (UK)

Hi all. Is it me or am one of the only people who have Still's bad? I'm not being funny but lots of posts I read says about people quickly coming down off Pred - being on a high dose but before long they are down to hardly anything. I have been on 20mg of Pred for almost a year now ... I am also on Cyclophosphamide (chemo) and I am also on Sulfasalazine. My CRP has been down to 42 but during flares it rises to over 100. Honestly is there anybody who is in a similar boat to me? I am 24 years old and although my aches are not too bad I just can't get my blood results down enough to come down off the steroids. Now I'm reading about the side effects to Pred and it's making me feel 10 times worse! It's a lose lose situation for me ... I need the Pred but from what I read its worse than the illness! What should I do? ... come down off the Pred regardless of whether I feel worse or not!? Also is Infliximab very dangerous? My doc says it is but I don't know who to trust to be honest. SteveVisit the Still's Disease Message Boardhttp://disc.server.com/Indices/148599.htmlThe 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.