Re: Re: Newbie here with preliminary dx of still's

[Guest guest]

My goodness, Sharon,

You sure have the " hurts " all over your body. The hair loss is the pits,

isn't it? Some say it's the medications but I think it's the inflammation in

our body. It seems when my joints and fingers and hands swell, my hair loss

is greater but........who knows? Sometimes my fingers swell so that I can't

even hold a fork let alone a glass. Things just keep dropping out of my

hands. At the moment I seem to be closer to normal than I have in a long

time and I don't know to what I attribute this. My fingers can now close

into a fist but not a tight one but that's progression to me and I'm happy

with any forward progress.

I know we all are waiting to see what your Rheumatologist has to say. I'll

bet he'll start you right off on a high dosage of Prednisone which I find to

be the drug of MY choice. It's just too bad that it's horrible for our

bodies. But, even a week's worth of lesser pain is WONDERFUL !!!!!!

I spoke with the Enbrel Company today and they are sending me three dosages

of the frozen ones that I stuck in the freezer by mistake. Thank goodness

for that. They didn't mention that they were going to charge me so I shall

wait and see if they do. It's such an expensive drug. I hope it gets here

by Thursday as that is my next " poke " day.

I certainly would speak to your Rheumatologist about Enbrel, Remicade or

Kineret. A lot of us are on either of them and seem to benefit from one of

them. I take mine along with Prednisone and MTX.

Keep us informed.

xxoo

Carmen

You're right.........we are a great bunch of people and by sad circumstances,

welcome you to our group. ) It's a fun group also.... )

[Guest guest]

Hi, Sharon! I just wanted you to know that I also run low fevers around

99-100. I never ran high fevers, but ran a low grade fever on a daily basis

for over a year. Once I started the prednisone a few months ago, I ran the

fevers less frequently.

At my last visit with my rheumy, I mentioned that everything I read says

98-100% of patients have high fevers. He said thereis also a small percent

that run low ones like us on a regular basis. (I asked him because I kept

questioning my diagnosis since I wasn't having high fevers.) anyway, I don't

know if this info. is useful at all, but I know it made me feel better asking

the doc about it!

I'm sorry you are going through this, but please yell if we can help at all.

[Guest guest]

Hi again, Sharon! I'm 35 and was diagnosed over the summer after being sick

since last August. My diagnoses changed over the year from human parvo virus

to Lupus to Rheumatoid Arthritis to Stills (all dependent on my bloodwork of

the month!). I'm not so sure how much age is a factor; though there are some

other people out here who know this info. a lot better than me. (and maybe if

one of them is reading this, they will respond!)

I have been told by others in the group though that the first year or two are

crucial and sometimes the hardest. During that time, you are being

diagnosed, adjusting to your meds (also waiting impatiently for some of them

to start working). I remember asking this group recently if this was ever

going to get better. Then over the past few weeks my meds seem to be finally

kicking in, I'm slowly weaning off the prednisone, and I'm starting to have

much better days.

I think a lot of it is individual and also how aggressively you treat the

disease. From what I read there is a lot of possible damage to the joints in

the first years. Therefore, it is important to get aggressive treatment from

the start. I am now on Prednisone, Plaquenil, Methotrexate then misc. meds

for other problems (Prevacid for acid reflux caused by the NSAID's; Calcium

w/ vitamin D and Miacalcin for bone density loss caused by the Prednisone;

Vitamin B6 for the Carpal Tunnel Syndrome; Folic acid to balance out side

effects of the Methotrexate...you get the picture!) This is not to scare

you! Just to give you a full picture.

I had many days where I felt very frustrated; in pain, confused, etc. It is

imperative that you get the proper dx and get started on the right meds. I

hope you like your doctor and trust him. I usually go to my appointments

with a list of questions. Once I even faxed him the list before I came so I

wouldn't wimp out and not ask him all the questions I wanted answers to! My

doctor is also very good about talking on the phone if you have any questions

etc. Hopefully you have someone you are comfortable with.

I hope if others in teh group are reading this and have different opinions

they'll correct me. Many in the group have been dealing with this much

longer than may and may have " greater " wisdom!

I do not envy you taking Chemistry -- I didn't do well taking it healthy! I

guess you have the Chem and I have my four kids to try and keep up with!

Maybe one day we can switch and see which is easier!!

Please continue to write and share your concerns, questions, laughs, etc.!

Be well,

[Guest guest]

Sharon,

I'm glad you found a doctor who is responsive. I was also thinking this

morning about one other thing regarding fevers -- some of us have found that

we also have lower than normal temperatures -- around 97. In fact, often we

feel like we're feverish, but when we take our temp it is only 97. I don't

think this is a marker for STills, but I wanted to mention it to you in case

you find this happening.

Have a good day,

[Guest guest]

Hello all,

I too, can add a little story about the " fever " thing. Yesterday I wound

up going to the ER for antibiotics, I seem to have gotten a viral infection

in my chest, anyhow, when the Triage Nurse took my temp she wrote down 97.3,

then she touched my arm, she looked puzzled, took my temp again, 97.1, she

then touched my face, my arms, hands and looked at me dumb founded and said "

Boy you sure are hot, but you have no fever....I then went back to the little

holding room and they took the temp again and so to make a long story short,

I baffled all of them, It was kind of humorous in a way. I found that no

one at the ER had heard of Stills and did not know what to do. My Dr was out

of town for the holiday so the Er Dr decided to give me Zithromax for 5 days,

thank goodness I see my Rhuemy on Friday.

Anyhow, the fever thing is different for all of us. I started off by

having the high 102-104 range of fevers, now I have the low grade of

99.-101., with daily spikes of 102, but they can be short lived, lasting for

5 mins or 5 hours. My fevers can spike one minute to 101 and then drop to 96

a minute later, and my body will still feel hot to the touch. Weird.

Thanks for listening, I am feeling better today, but my chest sure hurts and

burns when I cough.

Happy New Year to all my fellow Stilligans, may you all be blessed with a

very Healthy New Year.

Lorie