Meningitis and Stills

[Guest guest]

Hi Harry and everyone,

I am new to the group and found your post while searching for others who had

meningitis and encephalitis. I also had two hospitalizations- the first for

viral meningitis, and two data later, I became encephalopatic and was in the

neuro ICU for five days, and in the hospital for a total of 3 weeks while they

tried to figure out why I still had a fever. Then they figured out it was

Stills. They believe the Stills created the meningoencephalitis, and that it

could continue to do so in the future. This was in April 2012.

I was finally released on 60mg of Prednisone, and later, we added methotrexate.

Currently, I am on 20mg weekly mtx and 20mg Medrol. it's only kind of working,

and the tapering stinks, but I don't have to tell you guys that!

My main concern is my headaches. I have them every day. I have read all about

Kirk's horrible experience, and I feel terrible for him. I did wonder if he ever

had migraines prior to the Stills? (I did but they were under control-1 a

quarter until the meningitis). I am wondering if Harry's Stills presents in the

brain and cns as they believe mine does. I would like to learn more about his

experience.

I do not have any arthritis (yet). I only have a burning sensation in the palms

of my hands which they think might be neuropathy. Neither the mtx or steroid

help. I do occasionally get fevers, and of course there is the fatigue.

I am seeing my rheumy for Stlls and a neuro for the headaches. They are trying

some migraine preventatives to address the headaches (nortiptyline, propranolol

and depakote) but so far, not much luck. As my CRP increases, so do my

headaches, so I think it is a systematic problem.

Does anyone have any experience with these headaches/meningitis or

encephalopathy?

I did think of seeing Dr. Cush because of the rare manifestation of the disease.

Thanks!

Sara

>

> Dear Group,

> I am a 53 year old male with recently diagnosed Stills Disease. I just

finished 2 hospitalizations and the diagnosis was made the second time

> around. The first hospitalization included 8 days in the ICU with

meningo-encephalitis of unknown origin.

> I am currently on a tapering steroid dose and most of my symptoms have

disappeared except for those related to anemia.

> I hope to return to work in December on a gradual basis.

> I look forward to sharing my experiences, feelings, and any pertinent medical

information with all.

>

Sincerely,

>

Harry S.. Cyclura@...

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