Up Date Evelyn stills desease

[Guest guest]

. Hi sorry to hear about your meds not working. I've heard of Imuran

before but usually form people who have Rheumatoid Arthritis not so much Still's

but I think a lot of the meds work for both since it is in the same family of

diseases. I guess I am willing to go on whatever meds will make me feel bettor

than when I choose to have a family I will deal with it then. The way I am going

I'm in no shape to have a kid if I don't get any bettor.

My Rheumy's nurse just finally got back to me like a half-hour ago. She said

that I need to stay the course and they had no other ideas. I told the nurse if

they can't treat my symptoms then they need to treat my pain as I am already on

enough meds to try and sleep at night and the pain is keeping me up at night the

pain and then the profuse sweating from the break in the fever. Where I have to

leave the bed for awhile in order to be able to cool off.

But aside from my Rheumy I did take a step with my PCP I had a diff. kind of

appt for my new job and it turned out to be right next to my PCP's office. So I

just walked in there and told the Secretary I wanted to see a nurse so they

could really understand my symptoms and explain this to the doctor the secretary

didn't think this was possible but sure enough it worked! The nurse took one

look at my hands and asked me if I wanted to see the doctor right away. And I

saw him 10 minutes later!

I had 100.4 degree fever my blood pressure was fine but my pulse was 120 which

is always much faster when I have a fever. I told him about the coloration

issues with my fingernails and that all of my knuckles were still turning black

despite the highest dose of medicine possible and always wearing gloves leg

warmers and socks. I also had the hand trembling at the time so he got to see

this as well.

He clearly took some concern with my symptoms and did some more blood testing he

is checking my thyroid again, and is going to prescribe me some cream that you

rub on the places where I have no circulation that should help the blood vessels

to open back up again.

He said this isn't usually a drug that they give to out-patients but is hopeful

it will help me and decrease my pain and aching.. He has to call the local

hospitals to find out who has it.

He told me that even though it is so frustrating to have all of these symptoms

popping up that in the end it should help me get a bettor targeted treatment. He

said he really wasn't sure if it was Still's but that with time and new symptoms

we would find the right treatment. So I am hoping my PCP is taking me seriously

he is considering sending me to a diff. Rheumy not out of state but I guess a

second opinion in state can't hurt.

Thanks for every bodies opinions and support, I know many of you have far worse

symptoms than I do and I hope everybody is doing well. It is so nice to have a

place to go to. So that these issues can be talked about.

<3 aka Jalee ..<>..One in a Million <3

<3 Female 25yrs old ..<>.. Mandan, ND <3

<3 Diagnosed with AOSD on 10/20/10 <3

<3 www.stillsdisease.org <3

<3 Highest temperature 106 on 10/10/10 <3

<3 Positive RH Factor (no Rheumatoid Arthritis) <3

<3 Positive AMA M2 (no Primary Biliary Cirrhosis)<3

________________________________

To: Stillsdisease

Cc: diazxios3@...

Sent: Wed, January 26, 2011 11:10:28 AM

Subject: Up Date stills desease

Hi everyone just a little update of myself well I've been reading the post and

I think it is that the doctor dont whant to start you in mtx well I think

all the doctors are difrent because my doctor that was the first medicine he

wanted to put me in.But like I said before sad but true and not saying it in a

bad way is because is from the doctors that we should get all the

imformation.But that is why this group exist.I've learn so much in here I was

so ingnorant of my desease.I already have 3 precious kids but I want more and I

ask my doctor about mtx and he told me that if I took that medication it needs

at least 6 months for the body to take it out of the organism.I've read all the

medication that everybody is taking but not the one that Im taking :IMURAN:And

10 mg of prednisone and I have to try to lower the dose Im in 7 now.But Im

afraid that it is not working.

Re: Re: Are there any doctors that are Experts in AOSD

I called my PCP today and his nurse called me back she said that I shouldn't go

on MTX as should only be the last resort. She said she was gonna talk to the

doctor and call me back it's past 5pm already so I guess we will see. I don't

want to go on MTX if it is so bad for me. However I think I deserve the chance

to try different medications I know there is more than just plaquenil or MTX

available. I've been on Plaquenil for 3 months they say it can take up to

6months well that is great in all but what happens if it starts attacking my

liver in the mean time again. I already have the early stages of a different

auto-immune liver disease I don't feel like being a guinea pig when they can't

even prove to me what I really have.

The nurse for my PCP just called back and instead of giving me a referral told

me to see my rheumy again. Well my rheumy can't refer me anywhere....gurr just

agravated.

<3 aka Jalee ..<>..One in a Million <3

<3 Female 25yrs old ..<>.. Mandan, ND <3

<

[Guest guest]

,

Yes, I was just diagnosed with AOSD on October 20th. I was diagnosed over the

phone and told I was very sick My CRP was 27.9 and my sed rate was 84. I also

had a moderately elevated AST/ALT. I also had blood and protein in my urine. She

put me on prednisone on that phone call as well (but that really did help me get

out of that horrible flare). Next time I saw her she tested for a whole bunch of

liver diseases and of coarse all were negative except a positive AMA M2 which

usually means PBC (primary biliary cirrhosis) I since found out that I don't

really have the disease yet but am most likely to develop it as time goes by.

It's about a 98% chance. And the 2% come from people who died before they could

be tested in their later years. A few weeks ago I also found out I have chronic

dry eye. My Tear break-up time was a 4 when It is at least supposed to be an 8 I

believe. My PCP thinks it's possible I have Sjorgens as well. All though he

isn't positive I have Still's but my highest fever at 106 doesn't seem to fit in

with too many other diseases. I also have a positive RF Factor but I do not have

Rheumatoid Arthritis. Usually with still's they do not find the RF Factor, and

my Ferritin was normal as well. My biggest concern is that I may have a

connective tissue disorder like polymyosistis or dermamyosisits I honestly

think this is ever rarer, However some of my symptoms reflect these disease

bettor. As I have much more muscular issues and circulation issues then joint

damage. And as far as circulation I was diagnosed with Raynauds on 1/10/2011. So

I have had a miriad of AI diseases diagnosed in the last few months. However, I

have been ill much much longer than this with my first episode starting at the

age of 4 I am just not getting diagnosis s.

<3 aka Jalee ..<>..One in a Million <3

<3 Female 25yrs old ..<>.. Mandan, ND <3

<3 Diagnosed with AOSD on 10/20/10 <3

<3 www.stillsdisease.org <3

<3 Highest temperature 106 on 10/10/10 <3

<3 Positive RH Factor (no Rheumatoid Arthritis) <3

<3 Positive AMA M2 (no Primary Biliary Cirrhosis)<3