prednisone swelling other amenities

[annainitaly]

I've been taking prednisone (plus immunesoppressants) for two months and a half now, due to my autoimmune hepatic diseases (PBC & autoimmune cholangitis). started with 37.5 mg, now reduced to 25 mg daily. I HATE IT. I can see my face in the mirror swelling (more on one side than the other... grrr...) and feel my trunk creating plies, totally new feeling as I'm very skinny. in a normal situation, I would have loved a little fat as a thermic insulation between myself and next winter's cold, but this is totally unnatural. doc says I am not swelling that much, comparing with other patients (who the hell cares). today I am feeling discouraged and wondering whether to give it up... please don't think it's a matter of aesthetics, I am losing my self identity, feel myself one way and then meet another face in the mirror...  besides all the other problems, I have vertigo, brain fog, emotional vulnerability...
moreover, it is not at all given that these drugs will be of any help. docs are just trying and seeing IF they will slow down my disease, but we will know it in a year's time and I am really not sure if I want to take this dangerous stuff for such a long time.
feeling soooooo p****d off today. I know you people also go through dangerous drugs and worse than these sx, that's why I'm writing here. my friends who have no experience of it hardly understand.
I hope you all are doing well... oh, let's realistically say "as well as possible".
anna

[Lucky Lou]

Anna Bella!
Nicee to hear from you! you hang in there girl. we are all here for you. Yes! I will eventually come to Italy and look you up!
Take care Anna.

Riba Lou

[annainitaly]

here I am again, feeling better and need to thank each one for your precious help.
CHEV and CUTEOUS, you have been among my first contacts here and this has established a kind of special bind for me, some kind of imprinting, you know I am related with gees   :-))))

[annainitaly]

I must thank you all my friends for your strong, sweet, warm support.  I woke up early, the morning after posting my message, checked for possible replies and I found so many and so warm of them!  while I was reading,  my face was wet with tears, tears of comfort. I have been so tired this week I couldn

[Califia]

Bella Anna, my heart goes out to you.   In your suffering, dear soul, you are really more beautiful than ever.   I think of you like a woman by Modigliani, all angles and ballooning curves....     Smash the mirrors, if you must,  but in our eyes you are the fairest in the land.   Yes, believe it!

[aaapattie]

Just a note in case nobody has thought to tell you ... the Prednisone not only causes your metabolism to slow down to where your body grabs and hangs on to each and every fat cell, Prednisone actually acts as an appetite enhancer.  It makes you be hungry all the time.  Watch out for that.  I didn't realize that for the first six months or so and gave in to the cravings.  That put fat weight on me in addition to the swelling.  Just pay attention to what and how much you are putting in your mouth and you will be fine.  But get used to your stomach growling.  I've eaten so much ice the last year that I'm now having teeth problems.  Ha!

[layla]

I am sorry you are having such a difficult time. My daughters best friend and roommate has autoimmune hep and she was upset about the same problems you are expressing. I don't know what to say except to take care of yourself very well. I know her diet really afftected her health more so than with HCV.  In time she did feel better but it took some time and it was very difficult as you are saying. I hope your meds work soon. LL

[scruffy]

Ladies, with all these people(and me) pullin for ya and prayin for ya-YOU WILL BE VERY HAPPY VERY SOON. Sometimes soon is a little slow but it will arrive. Perservere.


Inspirational Lou!



Always impressed by your warmth Chevy.

[Nwlywed]

Thank you..
Your words created a nice little peaceful place in me-I feel strong now!!!
No more pity parties-well maybe one for 5 minutes  3 months from now:)
Jan

[Tallblonde]

Awwww, Scruffy....how kind of you!  Thank you for your encouragement and prayers.  Best wishes to you, too.

Susan

[aaapattie]

Hang in there girl.  You CAN do this.  I promise you - I know EXACTLY how you feel.  I too am Autoimmune and have been on Prednisone (and a couple of other FAT PILLS) since May of 2003.  But ... you look for the bright sides ... the only way!  
I was a firefighter for the Foresty Department.  Excellent condition.  Believe me - I KNOW what you are feeling.  I promise you it DOES get better.  You won't be on the high doses long and a little exercise will get you back to normal.  You will have a normal looking body again.  I PROMISE!!!    P.

[Tallblonde]

Your prayers are always appreciated -- especially now.  November is indeed a big month for me -- in more ways than one -- and I've been a total wreck in anticipation of what's to come during the next few weeks.  

In addition to my GI visit mid-month, my husband and I are trying one more time to become first-time parents with the help of a gestational surrogate.  The embryo transfer procedure is scheduled a few days before my GI visit.  By the time Thanksgiving rolls around, there may be a pregnancy to announce -- along with the news of further histological improvement with my HCV.  

I'm really not banking on the latter, though.  It just seems like too much of a long-shot.  And if I had the power to chose between a baby or spontaneous clearance, which one do you think I'd pick?  You got it....the baby.

I hope all is well with you these days.  I've been away from the board for a bit and haven't followed how you're doing.  Thanks again for your support and kindness.

Susan

[Lucky Lou]

Why thank you tall blonde. I also have a way with marsupials.. but it doesn

[Tallblonde]

I've printed your words of encouragement to dear Anna and will tuck them away for a future date when I need them as much as she does right now.  You've got quite a way with words, Lou.  

Susan

[Lucky Lou]

Anna Bella! I am sorry that you do not feel well. But Ana, we are Italian! We ruled the world for 935 years. My god Anna! We are invincible!!! Well almost (that damn Hannibal and his stupid elephants!)  Anna, it is true, it is always darkest before the dawn. This is the point of success or failure. We dig deep and decide to persevere, or   give up. NEVER! ANNA! NEVER! I will tell you a quick personal story. I was in prison. I smoked pot and got caught with a dirty urine. I was shackled and put in the

[cuteus]

How discouraging to see all the negative changes and not knowing if anyhting good will come of it. There is  a site that helped a friend's  daughter, struggling with psoriasis. clinicaltrials.gov....it put her in contact with a nurse in one of the trials, that gave her ideas and tips on what meds to take, she was not trying to recruit for the trial, just help.
who knows if there are some studies somwhere, and you might be able to contact the institution for ideas...
I wish I could help somehow.