Introducing myself

June 10, 2012

I was very pleased to find this group and hope I can give back to the group too.

My name is a and I was diagnosed with Stills Disease on Tuesday by my

rheumatologist at mass General in Boston. I live about 3 1/2 hours from there

but was not getting help her in the capital region on NY State.

My Stills disease story starts with a trip to the Dr to check out a pinched

nerve, ended up taking gabapentin for this and physical therapy. Worked great.

But I was found to have a heart murmur, which I never had before. This was

March/April of last year. When it didn't go away, I was sent for an echo to

find out I had a mild pericardial effusion. First cardiologist blew me off so I

found another and she took it very seriously as did my primary care doctor.

I went on to have a cardiac catheterization and continued to be monitored every

4-6 weeks. The cardiologist put me on indomethicin, an NSAID, to hope to bring

it down. When that didn't happen she wanted to put me on prednisone, which I

would not do unless I had a very good reason.

On Jan 9th my echo was unchanged. We went to FLA on the 13th, that night I had,

what I thought was, the beginnings of a cold. That funny feeling in the back of

your throat. Took some lozenges for a few days. By the 18th I was limping on

my left knee. Figured it was either something I did or maybe something to do

with my heart. But I was OK, just sore. Started missing some of my meds as I

was on vacation.

We come home on the 20th and by the next day I was limping in both knees and

soon both ankles. Within a couple more days I felt awful and almost like a

serious flu.

Went to the doctor's again but blood work was fine. So he sent me back to the

cardiologist. On Feb 5th I was in tamponade and required surgery to take the

fluid off of my heart. My cardiologist sent me to Mass General to a fantastic

surgeon there. A ton of pre surgery tests and blood work for the rheumatologist

there too, for my limping.

I had a partial pericardiectomy on Feb 29th. They took a liter of fluid off of

my heart too. Stayed in hospital for 5 days and got to come home! Well, all

should be good now, except for recovering from major surgery.

Went back to mass General for follow up with surgeon and meet with

rheumatologist to go over things. Blood work was fine so he figured I probably

had a mild fibromyalgia. It did not seem right.

Went to a rheumatologist around here and he was useless. Took x-rays of my knees

and they were fine.

3 weeks after surgery I had my first experience with a pleural effusion. How

scary that was. But blood work still normal so sent me home on colchicine and

naproxen. Woke up feeling so much better the next day!!

About 2-3 weeks after that another pleural effusion but started with a sore

throat, fever and I had a high WBC. Went to cardiologist but just a bit of an

effusion in the back part of my pericardium. Possible pneumonia? Went to the

ER, wrong hospital( They were more worried about some normal spot on my liver

and the fluid in the back half of my heart. Overall, terrible night at the

hospital. A few IVs of antibiotics and continued with the Indocin as the

colchicine did not help this time.

2 weeks after that, sore throat, headache, ears hurt, fever, high WBC and

pleural effusion. BTW, knees always hurt. But when I feel my worst, they

bother me way less. So, back to the ER, right hospital this time. I just wanted

the meds to go home and feel better. Hospital beds are so uncomfortable and

could not stay another minute in one. Three doctors tried to get me to stay as

they felt what I had was quite complex.

2 1/2 weeks later, my knees got even worse then came the pleural effusion, sore

throat, fever, head and ear pain, and fever. In a few days my fever went to 103

The head and ear pain are hard to describe as they are not like a regular

headache.

My primary care Dr was getting nowhere with specialists here, my cardiologist

just wanted to put me on pred without knowing why. So I called my surgeon, my

primary care doctor asked me if I wanted to back to Boston, and he got me back

in with the rheumatologist again. This time I had stuff on my blood work. I

had become anemic, my CRP was 152 and my Sed Rate was high.

This time, I did not recover like the other times.

The rheumatologist called me last Sunday to say he should see me sooner than

later as my blood work and symptoms showed serious problems.

Two days later, he diagnosed me with Stills Disease. Started my on 40mg of

prednisone a day and will re evaluate in two weeks.

The pred has helped a lot with the effusion but still get a bit of a sore throat

and knees still sore. I have lost about 14 pounds since my surgery but I am

good with that.

When reading up on Stills, it made me think of at time when I was in the 8th

grade. I got a terrible fever and could barely walk. They thought I had

juvenile arthritis or something. My mother's friend, who was a nurse, was

giving me vinegar baths to bring down the fever.

I am now 47 years old and feel way older some times.

I have no idea what is in store for me next.

Thank you for letting me share.

a Elson

June 11, 2012

you will also find us on facebook international stilss diseaseÂ and welcome i

am sorry for the reason but glad you are here

________________________________

To: stillsdisease

Sent: Sunday, June 10, 2012 11:34 PM

Subject: Introducing myself

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