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valance
New Member


Date Joined May 2008
Total Posts : 10
   Posted 5/16/2008 11:55 AM (GMT -7)   
Hi i have had chronic active hepatitis for 12 years now, last year i was asked to try azathioprine and i decided to try so i could come of prednisolone, i have now been taking azathioprine for a year and things have been ok, im having few side effects but my Lft's have been ok, i have not had any one to talk to about this just my doctors, and have only just found this site and would like to talk to people that understand thanks

Pink Grandma
Veteran Member


Date Joined Nov 2006
Total Posts : 2445
   Posted 5/16/2008 2:38 PM (GMT -7)   
Hello Valance and welcome to HealingWell,
Sorry that you have this disease but ............

You found the right forum we have a bunch of compassionate and knowledgeable people here.

Take care.........

By the way I deleted your duplicate post so as not to confuse anyone.
Pink Grandma
Forum moderator-Hepatitis

When the going gets tough....the tough get going! Don't always know where I going but I get there anyways.


JohnCT
Regular Member


Date Joined Mar 2008
Total Posts : 202
   Posted 5/16/2008 9:58 PM (GMT -7)   
Hi valance,

Just stopped by to say hi, and welcome. Pardon my ignorance, but which Hep do you have? I'm not familiar with any treatments but the Hep C Interferon and Interluken combos.

I'm a Hep C'er, diagnosed 30 years ago ('non-A, non-B' in those days) with symptoms the last 4 years. Too much time and too few platelets for treatment so awaiting an increased MELD score to qualify for a liver transplant.

So I'm sorry that you have to deal with this disease. But there are a lot of smart, caring and experienced people on this forum. Don't hesitate to ask questions or just share some of what your going through, good and bad. Having them here is a help to me, and know will be to you.

Be well, John
I have to get up the creek! Now where's that paddle?
Mind-fogged again.


valance
New Member


Date Joined May 2008
Total Posts : 10
   Posted 5/17/2008 12:58 AM (GMT -7)   
the doctor said i have a virus that attacked my liver, left it seriously damaged, they called it chronic active hep, thats all i know about it really, i was yellow for 6 months,
i also have other problems, I was told i would stay on steroids but they trying new tabs,

Thankyou for your reply, how does it make you feel? if you dont mind me asking take care Rona


Ps thankyou also for removing the other post i didn't realise i had posted 2 sorry

JohnCT
Regular Member


Date Joined Mar 2008
Total Posts : 202
   Posted 5/18/2008 1:11 AM (GMT -7)   

Hi Rona,

First, let me say that I am blessed with minor symptoms compared to most on this forum. In many cases, their quality of life is awful.  I am able to get out on good days and 3 to 4 days each week are good.  I have to push myself to exercise and to remain social and get out with friends.

On the good days, I am tired and used to sleep a lot. Now sleep is a problem and my day / night clock is reversed, which is why I am writing this at 4 am. I'll get to sleep around 5 am and get up around 9 or 10 am.

I have Ascites (fluid buildup in the abdominal cavity) so on good days I am slightly nauseous and on bad days I am really uncomfortable and in the bathroom every several minutes.  During these bouts, I unable to do anything but stay in bed and visit the bathroom.  When the Ascites is raging, I add a couple of inches to my waistline and add between 3 and 7 pounds to my weight.

I have Varices (weakened blood vessels at the beginning and end of the intestinal tract) so I have to limit the size of my meals and eat more frequent, small meals.  I eat fish and fowl but stay away from red meat due to the iron, which is hard on the liver.

I have mind fog (increased ammonia level from the liver failing) so I am forgetful, can't focus on things well, and can't complete multi-step tasks, which is not a good thing for a computer network engineer. I'm on disability due to this.
 
I can't remember much else right now as it is near my bedtime so I'll wish you well and head for bed.  We can stay in touch later.
 
I hope that things get easier for you and that you find the support here that I have.
Be well, John
 

I have to get up the creek! Now where's that paddle?
Mind-fogged again.


hep93
Elite Member


Date Joined Jul 2005
Total Posts : 12014
   Posted 5/18/2008 4:07 PM (GMT -7)   
Hi, Valance, and welcome!  I suspect you may have Autoimmune Hepatitis, based on the fact that you have been treated with steroids.  There are a couple of people on this forum with that type of hep.  You really need to find out exactly which type of hep you have for sure.  It's good that your liver enzymes are not too elevated, and that you are having few symptoms or sides.  However, I'm sure the disease is always in the back of your mind. 
 
I have chronic active hep C, and had the right lobe of my liver removed a year ago due to cancer (caused by the hep C.)  I am doing well, though always tired.  Since the liver surgery, I've developed two incisional hernias, with the first one repaired last Dec.  I am going into Mayo Hospital on May 29th for repair of the 2nd (recurrent) hernia.
 
Tell us a little about yourself.  Do you live alone?  Are you working?
 
Hugs,
Connie

valance
New Member


Date Joined May 2008
Total Posts : 10
   Posted 5/19/2008 2:48 AM (GMT -7)   
Hi well i havent work for a few years now, as i have back problems, i live with my mum and daughter who is 21, i also have underactive thyroid so im tired quite a lot, i still enjoy doing things,but im little bit shy,
 
do they put you to sleep for your surgery? i was told its risky for me to have surgery, what type of meds do  have to take? could you tell me a little about yourself
 
take care Rona x

DGinSD
Forum Moderator


Date Joined Apr 2007
Total Posts : 839
   Posted 5/21/2008 10:46 PM (GMT -7)   

Hi Rona,

Welcome!  I have autoimmune hepatitis (AIH).  From surfing the web, I've seen a few places that use the term 'chronic active hepatitis' synonymously with AIH.  AIH is the only hep that responds to steroids so that's probably what it is.  I too am on prednisone and azathioprine.  My body's gotten used to the azathioprine as I don't have noticeable side effects anymore.  The odd thing here or there that I think may be a side effect but it isn't troublesome, was worse when I first started.  It's been a little over a year now.  My pred is down to 5mg a day.  They wanted to try to get me off it by the end of last year but that didn't happen.  We'll see what happens at my check up next week.  If I do get to lower or drop, then I'll just be on the azathioprine so that'd be nice. 

Surgeries are riskier for infections as you have a suppressed immune system with the meds.  Everything should be checked with the hepatologist before anything.  Always better safe than sorry!

You said 'mum'...are you in the UK?  I'm Canadian (I live in California though) and they still say mum up there but most convert to the US way when writing! 

Take care,


Dany
 
Diagnosed with AIH January 2007
meds: Azathioprine 50mg + Prednisone 5mg


valance
New Member


Date Joined May 2008
Total Posts : 10
   Posted 5/22/2008 12:32 AM (GMT -7)   
Hi Dany yes that does sound the same as me, yes i am from UK i live near to Coventry, i was on my steroids for 11 years but that was mainly cause when i was diagnosed they didn't seem to know much about chronic active hep, im now just taking azathioprine 200mg, i put on a lot of weight when i first went on steroids, but since coming of them ive lost 3 stone, do you find it difficult to eat?, i dont have much of an appetite, thanks for talking to me and it would be nice to get to know you

Take care

Rona

DGinSD
Forum Moderator


Date Joined Apr 2007
Total Posts : 839
   Posted 5/22/2008 7:13 AM (GMT -7)   

Hi again,

I'm a snacker!  I gained about 28 pounds when I went on pred and still have about 15 to lose. I think it's still not that easy to lose the pred weight.   I haven't tried to strictly to do so yet but summer's coming!!  Maybe if they get me off it and increase the aza then I may have some appetite change?  I don't know.  200mg of aza seems high.  Is appetite suppression your only side effect?  What about hairloss?  Mine thinned when I first went on it then was fine.

Nice chatting!  We can sit online one day and have a cuppa!

Have a great day (evening when you get this),


Dany
 
Diagnosed with AIH January 2007
meds: Azathioprine 50mg + Prednisone 5mg


JohnCT
Regular Member


Date Joined Mar 2008
Total Posts : 202
   Posted 5/22/2008 1:30 PM (GMT -7)   
Hi Rona,

Near Coventry, eh? Please give my regards to Lady Godiva, as I haven't seen her in a few years. Now she knew how to dress, or not.

My former wife is from Kenilworth so we spent quite some time there. Her father worked at the Morris Garage and his best friend worked at Rolls-Royce.

I hope that you feel better and that medicine catches up with the disease. Keep strong!

Be well, John
I have to get up the creek! Now where's that paddle?
Mind-fogged again.


valance
New Member


Date Joined May 2008
Total Posts : 10
   Posted 5/23/2008 3:34 AM (GMT -7)   
Hi thanks to everyone that has send me messages it is really nice to be able to talk to people, smurf  

hep93
Elite Member


Date Joined Jul 2005
Total Posts : 12014
   Posted 5/23/2008 9:40 PM (GMT -7)   

Hi, Valance!  I am on no meds for the hepatitis C at present.  I take Lasix and Aldactone for fluid retention.  I am not on steroids.  Surgery for you would be risky because of your compromised immune system.  Fortunately, my immune system is working very well.  However, my surgeon did say that there is always more risk of infection and other complications when a patient has hepatitis.  The hernia surgery next week will be my 7th major surgery in 5 1/2 years.  I've been very fortunate that I've not had any infections.  I have been put under general anesthesia for all my surgeries, as they have been major operations, lasting anywhere from 6 hours to 3 hours...so the upcoming one will be the same.  I just am anxious to get it over with, though I'm not looking forward to the post-op pain and having a drainage tube and collection receptacle hanging out of my belly.  But we do what we must.

I'm glad to see that you've had response from DGinSD who shares your diagnosis.  But we are all here to listen and offer support.

Hugs,

Connie


valance
New Member


Date Joined May 2008
Total Posts : 10
   Posted 5/24/2008 2:49 AM (GMT -7)   
Hi thanks connie, you have been through a lot, i have had a thyroid operation it was overactive, then after they took to much of the gland away and it is now underactive, thats the only operation i have had, i had liver biopsys, they missed first 2 times, then 6 weeks later i had it done again, how long will you need to be in hospital? I hope you dont get to stressed before your op, im not keen on hospitals
Take care
Rona

frustrated_n_wv
Regular Member


Date Joined Aug 2006
Total Posts : 469
   Posted 5/24/2008 4:07 AM (GMT -7)   
Hi Rona and a belated Welcome (been having computer problems). I too was diagnosised with chronic active hepatitis prior to being given the diagnosis of autoimmune hep. I think they use that term here when they don't know exactly what is going on just that something is attacking your liver. I too take prednisone and imuran along with lasix and spironolacto to control the fluid retention. I am so sorry that you are having to deal with this disease but am glad you have found this forum. It has helped me feel not so isolated in a world where most do not understand what dealing with this is like. Good luck to you.

Lucy

valance
New Member


Date Joined May 2008
Total Posts : 10
   Posted 5/24/2008 7:42 AM (GMT -7)   
Hi Lucy it's nice to be able talk to people that understand, how long have you had the virus? there is lots of nice people on here, take care Rona

hep93
Elite Member


Date Joined Jul 2005
Total Posts : 12014
   Posted 5/24/2008 12:05 PM (GMT -7)   
Lucy, nice to see you posting again!

Valance, the surgeon said that, barring complications, I will be in the hospital until they can get me stabilized on oral pain killers. The first two days, I'm always on the morphine pump; then they go to intramuscular injections, and finally to Percocet. I have a low pain threshold and a high tolerance for pain meds. Sometimes they go straight from the pump to oral Percocet. I'm expecting to be inpatient for at least 3 days. The upside is that I will be in Mayo's brand-new hospital that just opened last month.

You mentioned that they took too much of your thyroid gland. Do you now take thyroid medication?

Hugs,
Connie

frustrated_n_wv
Regular Member


Date Joined Aug 2006
Total Posts : 469
   Posted 5/25/2008 3:09 AM (GMT -7)   
Rona

I was diagnosised with autoimmune hepatitis in 2006. For nearly three years prior to that they had given me the diagnosis of chronic hep as they really didn't know what was going on with me and my ANA markers were not high enough (although above normal) to fit an autoimmune diagnosis. I have no idea how long I have had this disease. They say it can go on for years and years prior to having any real problems or sympoms with it. I understand how you feel about finding people to talk too that understand what you are dealing with. Everyone on here has different experiences and different diagnosis but our feelings reamin the same.

Connie

I am still so envious about your trip it sounded wonderful. When is your surgery scheduled for? I will keep you in my thoughts and prayers for it go as well as the others have. Have missed talking to everyone here.

Lucy

valance
New Member


Date Joined May 2008
Total Posts : 10
   Posted 5/25/2008 3:36 AM (GMT -7)   
Hi Connie i hope the surgery goes well, where abouts do you live? it will be nice to go into a new hospital, we had new one build few years ago it is really nice inside but you have trouble finding clinics its like a maze,  yes i do take thyroxine im on 125 mg now, take care for now Rona

Hi lucy, did you get jaundice before you were diagnosed, as it took my doctors 4 months to work out what was wrong, i was jaundiced for 6 month's i could'nt eat either as i was sick all the time, I only found out about this site cause someone told me, and its really nice being able to talk thanks take care Rona

Post Edited (valance) : 5/25/2008 7:10:23 AM (GMT-6)


hep93
Elite Member


Date Joined Jul 2005
Total Posts : 12014
   Posted 5/25/2008 3:38 PM (GMT -7)   

Lucy and all, my hernia surgery will be on Thurs., April 29th.  Valance, I'm in Jacksonville, FL, where we are fortunate to have Mayo Clinic (and now hospital) here.

The hernia is in my midriff and is now the size of a bowling ball.   sad

All prayers and positive thoughts are appreciated.

Hugs,

Connie


frustrated_n_wv
Regular Member


Date Joined Aug 2006
Total Posts : 469
   Posted 5/26/2008 2:56 AM (GMT -7)   
Rona

The first problem I expereinced was losing most of my vision in my left eye. The trying to find out what had caused that to happen is what started this journey. I did jaundice although it was totally unnoticable to me at the time. Other people were telling me how my makeup looked different and how odd my coloring was. What I remember more than anything was the extreme fatigue I felt. Getting out of bed was an effort, it was like I had to remind my body to move because it wouldn't on its own. I slept all the time it felt like yet never felt like it was enough. I don't think my family even saw me for nearly a year that I wasn't either laying down or sleeping. The prednisone was the only thing that has allowed me to have a "normal" life again where I could function. Also my muscles ached all the time and I had frequent and severe leg cramps. I think I kept ben gay in business during that time even though it really didn't help much. I also lost nearly 20 pounds during this time. I know my appetite wasn't good and I was lucky to eat one meal a day. I know now that it is associated with the AIH but at the time I attributed it to drinking to much coffee to try and stay awake at work and just function. I would alternate between coffee and caffinated sodas all day long. I hope it helps you to know that others have been though what you have, I know it did me to help me understnad I was not so alone. Have a great day.

Lucy


Connie

I know that compared to what you have already endured that this procedure should be less traumatic, but they all are scary and anxiety ridden. Please know that you will be in my thoughts and a special prayer will go out to you on the 29th. Please let us know when you are home. We will miss you.

Lucy

hep93
Elite Member


Date Joined Jul 2005
Total Posts : 12014
   Posted 5/26/2008 11:00 AM (GMT -7)   
Thank you so much, Lucy!

Hugs,
Connie

valance
New Member


Date Joined May 2008
Total Posts : 10
   Posted 5/27/2008 8:21 AM (GMT -7)   
Hi Lucy thats sounds quite scary losing part of your eye sight, is it ok now? or do you still have problems, i was really jaundiced for 6 monhs the doctors used to come round the wards and joke, saying had i been abroad, I was sleeping lots to, the sickness was the worst for me, i eventually could eat anything, once they started me on the steroids i started to feel better, i got leg cramps and my back was really bad, take care Rona

Hi Connie hope you are ok, and wish you well for thursday Rona
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