here i go again

[loulou]

THank you Tx

I think i will be extremely nervous when the date gets nearer.

Just to put the boot in further, i had a meeting today with line manager at work, (i work p/t) i was honest about my latest diagnosis i thought it would be better than to try to keep explaining whats wrong when i am off sick.

Well i have been referred to occupational heath, i was referred there when i was first diagnosed with sjogrens and thyroid, i was told then there was not alot they could do about it, so i expect that reaction again. Still another day off work at their expense. Never stops does it.

Hope your well.

Loulou

[Leisa]

I'm so sorry to hear about the pbc. I hope you are in the trials now and you can share with us how it's going
I was diagnosed a couple of years ago with 50% bilary cirhhosis too. The only thing, the endo did not touch on the subject with me! I was there for thyroiditis and numerous growths on the thyroid. At that time i had not been diagnosed with sjs, lupus, fibro or R.A. The only reason i know about this is because i hand carried my lab results from my physician to the endo. So today i got to thinking about that result and was wondering if it had anything to do with AI and looked it up online. Now i'm freaked out and will talk to my rheumy when i see him the end of June. I can't believe i go to all these docs and no one seems to relate any of these signs with each other! I pay them good money to take care of me but seems i need to do all the leg work.
I don't drink so i guess this is one more thing i have to worry about and make sure i get answers! No wonder i have problems eating and feeling sick!!
Sorry to rant but i'm really concerned when it comes to liver involvement!

[Poochie]

Good Luck Lulu, I will keep you in my thoughts and prayers.  I hope you have a great result with the trial and very minimal side effects or none at all. 

Please let us know how you are doing and remember "When you're here, you're never alone!"

Hugs, Pooh

[loulou]

Update on clinical trial.

Thank you all for your thoughts and wishes.

I was doing ok, until a couple of weeks ago. I had 4 nights of no sleep due to unrelentless itching that tried my sanity. I was told to stop and was put on questran (a binding med) but that caused me my digestive problems to return with vengence. After 3 doses of that i couldn't cope with bloating, indigestion, heartburn, acid etc. so i stopped.

Well i had an apt last week and i said i would like to continue with the trial if there was a way round this. My liver doc said i could take the drug every 3 days instead everyday he wanted to put me on questran again incase of return of itching, i told him i would only take questran if the itching started, so i would take that half dose also. I am optomistic about carry on with the trial, i really want to reach the end of trial.

Leisa - you have a whole load of stuff to be dealing with, i am not surprised you feel so let down. You should definitely request some answers when it comes to your liver functions. I hope your apt goes well in June and you get the answers and care you need. All the best with that, let us know how you get on.

Hi pooh - how you doing. Thank you for your thoughts hun, your right ! i never feel alone in here, you are a star.

TAke care
loulou

[Dolly Dimples]

  Loulou, You certainly have been having a rough time with this complaint,

  the itching must have been dreadful... nothing worse..... but you have been very brave girl,
   
     it's great that you want to carry on with the trials, so I want to wish you every success..
                         Your a star too, keep us informed, Luv Dolly

[irish]

loulou, Hopefully, all will go well with this drug. The itching is from the liver disease and can be the pits. Also, you know your body so maybe taking the Questran in smaller dosage will still work and not cause so many side effects.

The primary biliary cirrhosis is another one of the autoimmune issues that can come with the sjogrens or any other autoimmune disease for that matter. I would think that it could also come just by itself. If there is anything that autoimmune disease does do is keep everyone on their toes. We never know where, when or what is going to happen. We really do learn the one day at a time thing.

Good luck now and keep us posted. Sounds like you have a good doc to direct your care. Irish

[Rhonda]

God Bless.  I will keep you all in my thoughts and prayers.