Re: MESSAGE FROM KATHY - TANYA'S MUM

[Guest guest]

She's on a dosage of 30mg, so i'm not sure how high that is, but I spoke to her

just now and she woke up feeling much better today, so its obviously having the

right effect.

Will keep everyone posted.

Thanks.

Kathy

[Guest guest]

Hi Kathy 's Mum:

I am Bob the Secty/Treas. of the Stills Foundation. I would like to send you some brochures to hand out to your Doctors, Friends and Relatives if you like? They are loaded with information and I am sure your Doctors would find them most helpful. Just send me you regular mailing address and I will send you some. If you would like some please send your address to my personal address so we don't clog up the email works on the list. Take care now and be PAIN FREE! Love Ya'll!

WE WILL WIN

Love Y'all

"NEVER FIGHT FAIR"

Dad & Mom

Panama City, FL

Please visit the International Stills Disease Foundation Inc. Web Site at

www.stillsdisease.org

There is now a Third Political Party: The "VPA", Veterans Party of America.

Veterans= "Third Class Citizens"

[Guest guest]

Hi Kathy,

I think will do very well on the 30mgs. of Prednisone. The two bad things about it is that is just masks the pain, doesn't cure it and also it's so bad for your bones. Make sure she takes enough calcium. My Rheumatologist had me taking Fosamax along with my regular, daily calcium + D pills. With everyone taking this and that, I can't remember what else she is taking if anything. I hope she keeps feeling better. Why is she still in the hospital? Are they doing tests on her all the time? Tell her that her mother has found a great place to find out things...... ) !!!!!

Mi. Carmen

[Guest guest]

Hi Kathy. I was placed on steroids for the first time in January during my first hospital stay this year. I went from having the high fevers (as high as 105 at that time, but have had 106.2 once) and chills coupled with a brutal headache. Two days later, I was released on a tapering dose. My first dose was 80 mg/day for 2 days, and it dropped 10/mg/day every 3rd day. When it got down to 20 mg/day I was back in the hospital with all of the same problems minus the severely inflamed tonsils. I was put back on steroids and released 5 days later. My dosage was a much slower taper, which bought me a bit over a month before I was back in again for 8 days.

I have been on steroids since, and have to take Fosomax to prevent bone loss. My dosage has been increased as high as 60/mg/day during my many flares.

The steroids are a godsend initially. The side effects I have had are weight gain, irritability, inability to sleep (this was very harsh initially) and I have become more "aggressive". I also have to deal with acne, and I never had to really deal with this before. My face looks more round also. I am keeping my fingers crossed that my trip to the University of Pennsylvania later this month can help get me off of them with the addition or a change in my meds.

I hope your daughter feels better. I have a 5 yr old and 3 yr old and it was horrible not to be able to see them as the hospital would not allow them in as there was a ton of the flu going around here earlier this year.

Have a good one, Kirk.

MESSAGE FROM KATHY - TANYA'S MUM

Many thanks to everyone who e-mailed me in connection with my daughter, .

had a bad day, in a lot of pain, on Monday at Kings College Hospital in London, but Tuesday was much better and when I got there to see her she seemed quite lively. I can't fault the Hospital, which been so thorough with all their tests - they even gave her a heart and stomach scan and ECG yesterday. They have asked if they can use her notes for teaching, which she felt quite honoured, and in a way it might mean that more people learn about this disease and recognise it quicker.

The Specialists have just started her on Prednisolone and Adcal D3 (Vitamin D for Bones), so any advice/experience on the drug would be useful.

Hopefully, if she responds well, she may be able to go home soon - which would be good.

Thanks once again, and keep in touch.

Kathy 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.