Update - Getting Closer

[Guest guest]

Hi...it's been a while since I've been on...hate to see some of you

are having a tough time. Although I'm up and going, I have been

having a pretty tough time lately especially the last month. I went

back to the doctor Monday and he said that he is going deeper into

the testing of my immune system. He said that I definitely have an

autoimmune condition - possibly arthritic. He is doing deeper tests

related to anti-SSA and anti-SSB since both of those have come back

positive on the FANA along with quite a few others.

I am having lots of joint pain right now with the joints on the

right side of my body being worse. I have some swelling of my hands

and ankles and have a general overall sense of sickness. Some days

I do quite well compared to others and some days I literally feel as

if I can't live through the day although I know that is not the

case. The doctor said I definitely have some damage to my hands

already and that I am not responding to what we've been trying - all

natural (I am super sensitive to vitamins which he said could be

Crohn's). Thus, he said in the next few weeks to months we may

discuss Imuran or Prednisone. My twin sister has just been

diagnosed with Crohn's so they are testing me for that also. The

doctor said that it is very probable that I have Crohns but that I

also have a separate, very complex autoimmune condition causing my

other symptoms.

I hope with all my heart that I don't have the Chrohn's, but I feel

it will come back that I do. I don't so much dread it in itself but

the tests and all you have to go through.

Just wanted to let you know how things were going. My family was

very concerned at first about me trying the meds, but we talked it

all over quite a while last night. They are very supportive, and I

know things will work out in the future. I certainly don't want to

take Prednisone for the rest of my life, but in my mind I thought

maybe a five day dose pack would help through the roughest of

times. Sometimes this all gets so very discouraging and confusing.

I understand the medicine concerns of my family, but to me it was a

glimmer of hope that hasn't been there...maybe not. (The past year

I haven't had anything to take but vitamins that made me deathly

sick.) To me, the doctor's visit offered a glimmer of hope even if

it isn't the optimal solution. The doctor told me at this point

that the immunosuppressants and steriods were about our only

choices. He said he will be watching my blood work very closely,

and that if I start into a very damaging flare, he will definitely

give me one of the two to keep from any severe damage.

Well, sorry for the ramble...I have to talk out my concerns but I am

trying to quit focusing on it so much...thanks anyway

for " listening " Wishing you all better days.

P.S. I would be interested in any positive results of anyone using

short steroid doses to control moderate flares. I've heard all the

horror stories, but I would be interested in any positive results.

[Guest guest]

Dear ,

Thank you for posting. You have a good doctor who is very persistent on getting

some answers.

If this is autoimmune (which it probably is), a short course of prednisone will

definitely make you feel better. This is what they did with me and it worked

except that I couldn't taper quickly. However, I wouldn't call it a horror

story because the doctor realized what he was dealing with by my response to the

med. Prednisone tapering is hard for almost everyone because these conditions

are steroid dependent.

But it was positive for me because it was the first real proof that I had an

autoimmune disease.

I hope that you feel better and that it turns out that you don't have Crohn's.

Autoimmune diseases do run in families but it's more like a genetic

predisposition and everyone gets something different.

Best wishes,

beth