Re: New here - introducing myself

[Guest guest]

Hi ,

I have read your e-mail and I was actually thinking your journey sounded just

like mine.

I could certainly empathize with you. It was almost too painful to read what you

went through

and are still going through. It brought back to my memory the same seniero.

I am however, in my early 50's.I was diag. 2 years ago. I am not one for

medications either.

I battle with my wonderful Dr. constantly about trying to function without meds.

I will tell you that metho. has been around for a very long time, and it a

powerful drug.

It is a very good medication though. I am on it for about 1and1/2 years. It does

take

about 20 weeks to take full effect.I was also on pred. for 1 year and 9 mos. I

weined myself

off a half a mg. every 3 weeks.It took forever. My Dr. was not in favor of it. I

am off it for almost 2

months, and I feel terrible. I try to fight this disease anyway I can without

pred, but it is extremely

difficult. My Dr. wants me to try Humara.

I teach elementary school and I am very fatigued all the time. I had to take the

last school year off.

I am back at school and it is extremely difficult to be there. I take one day at

a time and push myself

to do better. Don't get me wrong and think it is easy. It isn't.

I stayed at home with my children for years until they were in school. You will

be OK once you get

under control. Just try your best to tolerate the meds so that you feel good

for a long time. Then

perhaps you can start to slowly wein yourself off. Please give yourself a chance

to feel good for a long enough

time.

a

New here - introducing myself

Hi! I'm a newbie and I will have a LOT of questions for you all soon,

but I thought I'd start by introducing myself and telling my Still's

story.

My name is and I am 29 years old and live in Northern

California with my family. I am currently a SAHM and have a 1yo son,

Zachary, and a 4yo daughter, .

I started having strange symptoms in mid-January. I felt like I was

coming down with the flu - sore throat, headache, fatigue, fever,

etc. - but also had joint and muscle pain. The pain was really weird

to me because it would be in a different place almost every day.

First it was just in 4 fingers. Then my elbows, too. Then my fingers

would feel better but my hips and shoulders would hurt. I also had a

rash that would come and go. After several days it got to the point

where I couldn't function so I called my PCP who told me to go to

urgent care. After 5 hours they told my that I was dehydrated and had

a sinus infection so they gave me iv fluids and sent me home with

abx.

Four days later things were not getting any better so I went back to

my PCP who suspected Parvovirus and ordered blood tests. A few days

after that, my joints started swelling really bad. 6 of my fingers

swelled up like purple sausages and my knees were huge! I am skinny

and bony so it looked quite shocking. I also couldn't walk without

assistance and the fever spikes were getting incapacitating. I would

lie in bed for an hour at a time just shivering uncontrolably until

the tylenol or motrin kicked in again. I had toothaches from my teeth

chattering so badly. So back to urgent care I went. This time for 7

hours. More lab work was done, ekg (my pulse was 140), x-rays. The

doc consulted with a rheumatologist who said it sounded viral but

agreed to see me the next week. All of the tests came back pretty

inconclusive so they sent me home with Vicodin and a rheumatology

referral.

So the following Tuesday I saw the rheumatologist for the first

time. She was pretty sure it was Parvovirus, but the test had not

come back. She mentioned that it could also be Stills Disease, but

said that it was pretty rare and that it could only be diagnosed by

ruling out everything else. I was feeling pretty lousy at this point.

The fevers were really bad still. And though my knee swelling had

improved, now 8 of my fingers were swollen so badly that I couldn't

bend them at all. She gave me some perscription- stength ibuprofen and

said to follow up with my pcp regarding test results.

Over the next few days I actually started feeling better. The

ibuprofen really helped the pain and I was able to move much more

freely. I still had the spikey fever, though, and the rash was

spreading all over my body. When I went to my pcp I was in the middle

of a fever spike and couldn't stop shaking. She told me that the

parvovirus test had come back negative. My temp was 104 and my blood

counts were all out of whack so she sent me right away to an

infectious disease specialist who put me in the hospital.

They did gallons of labwork, an echocardiogram, more x-rays and had

me on IV abx for 2 days which did not improve my symptoms at all.

They decided that I didn't have an infection after all and started to

look more seriously at other issues including Still's Disease.

They started me on 60mg of Prednisone and the results were immediate.

Within a couple of hours the swelling in my fingers had improved

noticably and my rash started to fade. I continued to have a low-

grade fever for a few days, but it never spiked again. I was

discharged from the hospital after 4 looooong days with a tentative

dx of Still's Disease pending more test results.

After leaving the hospital I continued to improve. I had less pain

and swelling every day. I followed up with the rheumatologist and was

told that all the labwork came back either inconclusive or consistant

with Still's disease. She started me weaning off the prednisone in

10mg intervals down to 40mg. I had one day where it seemed like the

fever and rash were coming back, but otherwise felt really good. I

have occasional sore, stiff joints - mostly in the mornings in my

fingers, wrists or knees - but it is minor pain compared to what it

was and I am still functioning at close to normal level.

So now my rheumatologist wants me to start methotrexate as I continue

to taper off the prednisone. I am eager to get off the pred - it

makes me a crazy person - but I do not want to start mtx right for a

variety of reasons. {I'll have lots of questions about that soon.}

My doc agreed to let me go another month reducing the pred in 5mg

intervals and revisit the question of additional meds at our next

visit.

So that is where I am now. I am on 35mg of prednisone. I feel good.

My pain is minor. I don't feel sick - no fever. I am sleeping better.

I am not as angry and mean as I was on 60mg of pred. And I am

cautiously optimistic that I will be able to manage this condition

well.

Sorry for the looooooong post. I am so happy to have found this group

and to be able to discuss this condition with people who have BTDT.

Looking forward to getting to know everybody!

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