Re-Introduction to Group - long

[Guest guest]

Hi all....

I am one of the many members who quietly sits on the sidelines, reading posts,

but seldom writes. It is kind of strange because I feel like I know many of you

from reading your posts...struggles...life events etc. I am so grateful that

this group exists because, although I don't actively participate, I regularly

recieve helpful information and find comfort just knowing that you guys are out

there...that I am not alone in the Stills battle.

A little about me...My name is and I was diagnosed with Still's back in

Dec 2008 and joined the Still's Forum shortly after. I am a 34 year old mom

with 2 amazing children (14 year old daughter and 11 year old son). My

significant other of 6 years is a quadrapelegic, but is so amazingly calm,

patient and loving that his disability, though severe, is insignificant. I

could not have gotten this far without him.

I am currently struggling through my 3rd major flare since diagnosis. I have

not managed to completely off of Prednisone since I was first diagnosed, though

my dose is typically 5 mg/day. Additionally I take 25 mg Methotrexate weekly

with minimal side effects (Additionally, I take calcium w/vit D, fluoxetine,

folic acid, Boniva, trazadone and benedry)

.. Nonetheless, my health was great at the beginning of the year and so we

started to try to reduce my weekly Methotrexate to a less maxed out low dose.

This is perhaps what started my flare back in March - mild, with rash, stiffness

and low grade fever. In April the Dragon came out in full force - rash, joint

swelling daily fevers, etc. My rheumy started me on 40 mg of prednisone daily,

but I was still having major symptoms every night so my doc added 20 mg to my

evenings. After a month at this daily dose I am finally starting to have a

somewhat successful taper...I have managed to get down to 30 in the morning and

20 at night with the help of Tylenol. I am hopeful that this flare is settling

down, but I am not certain. My feratin and c reactive protein are both high,

but I don't have many options other than just keeping my stress at a minimum and

taking my meds as prescribed. I am supposed to taper to 20 and 20 in the

upcoming week - I hope it goes well. Unfortunately I do not have health

insurance (so all medications, doc visits,etc come out of pocket), I do not

qualify for medicaid, and I did not qualify for kineret assistance last year

(though I plan to reapply this year since my income has decreased since then).

I plan to have my vit d levels checked as I have read that vit d tends to be low

in autoimmune plagued individuals. Additionally, does anyone have any success

with alternative treatments (traditional chinese medicine, acupuncture, or

other) that might be worth pursuing? My rheumy essentially told me that if my

taper is not successful that I will need to spend some time in the resort (which

I have managed to avoid so far)to do higher dose IV steroid treatments - I would

like to avoid this at all costs.

Thank you in advance for taking the time to read my lengthy post...

Lastly, happy mothers day to all you incredible ladies out there who are

managing to juggle not only this disease but your family and lives as well.

=)