recovering from acute hep, non A-C and fatigue

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realgal
New Member


Date Joined Apr 2006
Total Posts : 2
   Posted 5/4/2006 2:04 PM (GMT -7)   
I am recovering from a mysterious non-specific hepatitis, non A-C, etc., origins unknown after many tests, including liver scans, blood work, etc. Four weeks of fevers, headache, stomach pain and extreme fatigue.

Much better now, ALT numbers are back down, but into my 6th week and still have a lot of fatigue. Anyone know how long this might last? Is it true the fatigue might last 2-3 months more? Is moderate exercise OK, esp since I've been doing nothing for so long?

Thanks for any feedback. :-) :-)

lerie
Veteran Member


Date Joined Nov 2005
Total Posts : 966
   Posted 5/4/2006 7:05 PM (GMT -7)   
Hi Realgal,welcome to HW forum. You will find a lot of supportive people here & tons of info. I can't answer you question as I do not have hep. I have cirrhosis from prescription drugs. Someone will come soon to answer your question tho who does know about your illness.Take care & God Bless. later....

Barbara P
Regular Member


Date Joined Feb 2006
Total Posts : 256
   Posted 5/4/2006 7:06 PM (GMT -7)   
Hi Realgal,
 
Welcome to the forum. It sounds like your condition was discovered early and hopefully will be acute rather than chronic.
 
Take your time getting back into exercise and your old routine. Listen to your body and your fatigue. Read our posts and eat a liver healthy diet; check out supplements and vitamis with your hepatologist to make sure you don't do anything else to cause liver inflammation.
 
The term hepatitis is often used to refer to liver inflammation and is not always viral. Do they believe your hepatitis is viral? My husband was initially diagnosed with alcoholic hepatitis but unfortunately it turned out to be advanced cirrhosis and did not return to normal with a healthy lifestyle and diet free of alcohol.
 
Please keep us informed of your progress.
 
Hugs,
Barb
                     LIVE IN THE MOMENT!
 
                          Hugs and Prayers
                                     Barb
 
 
 
 


wheredidigo
Veteran Member


Date Joined Mar 2006
Total Posts : 605
   Posted 5/4/2006 7:15 PM (GMT -7)   
hi real
I had acute hep b,,and i was extremely tired for about 3 mths,,,,,and really didnt get back to normal until about 6 mths,,,,at which time they ran blood tests and determined my body kicked the hep,,,im not sure they can tell you for sure its acute until after 6 mths,,,,but then again if yours isnt viral maybe they can??? the advice from my dr was,,,eat high protein diet and get plenty of rest,,no overly strenuous activities,,,luckily i was off work to have carpal tunnel surgery so i didnt have to work while tryin to fight the hep too...you may not stay sick for as long as i did. 1 out of 20 ppl in the US have chronic hep b,,most adults who contract hep b,do not develop chronic,,,and only 1 percent of ppl who get acute hep b,,get violently ill like i was,,i almost died. If ya have any more questions id be happy to try to answer them or at least help you find the answer. everyone is different so the most important thing is,make sure you have a good dr who understands your illness,research for yourself because drs DO make mistakes,and trust your instincts about activity. oh and stay away from as many meds as possible,,especially tylenol,until your liver function is back to normal..good luck :)
trish

hep93
Elite Member


Date Joined Jul 2005
Total Posts : 12014
   Posted 5/4/2006 8:30 PM (GMT -7)   
Welcome to the forum, Real. I just wanted to add that you must not drink alcohol. It's the worst possible thing you can do to your liver. You probably already know this, but just in case...

Connie

Marg57
Regular Member


Date Joined Dec 2005
Total Posts : 446
   Posted 5/5/2006 12:00 AM (GMT -7)   
Hi Real,
Welcome to the Forum. I have autoimmune hepatitis which has caused chronic cirrhosis. I was fatigued for about six months. After that i resumed work part time and have not looked back. (except for a couple of very minor set backs). Listen to your body. It will tell you when you can resume activity. Don't push yourself for the sake of relieving your boredom.
Take care and good luck with the recovery
Marg
 


realgal
New Member


Date Joined Apr 2006
Total Posts : 2
   Posted 5/5/2006 3:49 AM (GMT -7)   
Thanks so much for all your wonderful replies. It is heartwarming, esp when one can feel so isolated with an illness of this sort. The hep was overlapped by a Crohn's flare-up, so I am now dealing with them both, mostly the Crohn's but well on my way to recovery. The fatigue is the worst at this point. Crphn's causes fatigue also. BTW, After 8 free and clear CD years, I believe the Crohn's was brought on by the Doxycycline they gave me when they thought I had Lyme Disease, not hep, and that ripped the heck outta my stomach. That and the aspirin and advil for the daily fever and headache brought it on in my opinion.

Thanks again!

hep93
Elite Member


Date Joined Jul 2005
Total Posts : 12014
   Posted 5/7/2006 8:49 PM (GMT -7)   
Real, you are probably right about what brought on the flareup of Crohn's. Take good care of yourself.

Connie

hep93
Elite Member


Date Joined Jul 2005
Total Posts : 12014
   Posted 5/7/2006 8:50 PM (GMT -7)   
Double post.  Ignore or delete.

lapomme
New Member


Date Joined May 2006
Total Posts : 1
   Posted 5/17/2006 11:49 AM (GMT -7)   
Hi Realgal- my husband was "diagnosed" with "non-specific hepatitis" about 4 years ago with what seems like a similar situation to yours.  It seemed to be an acute illness.  Note also, he very rarely drinks alcohol.  He ran a high fever (103-104) for a few days, which landed us in the ER, he was achy, nightsweats, then when his fever dropped it stayed lowgrade for weeks.  Our internist ran bloodwk. showing significantly elevated liver enzymes.  We were referred to a GI and the final outcome, after scans and various tests, was that he did not have hep. A, B. or C, they basically did not know what he had, but he had something which had caused his liver to be inflamed.  (A scan also showed he had a hemangioma on his spleen, which later resolved.)  As another posting said, the word "hepatitis" means inflammation if the liver.  So, the final diagnosis was "non-specific hepatitis."  I said to the doctor, "so you're telling me you have no idea what is wrong with him, he has none of the hepatitises you have tested for, he simply has an imflamed liver and you do not know why?"  That was the case.  My feeling was that the diagnosis was not much of a diagnosis at all, simply a description of a symptom, and I still worry if there might be some underlying disease or genetic issue that has gone undiagnosed.

deedeerose
Veteran Member


Date Joined May 2005
Total Posts : 1117
   Posted 5/17/2006 7:26 PM (GMT -7)   
Hi all. I have been "lurking" (LOL) your forum for a couple of weeks now but have decided to post tonight as tomorrow I will hopefully get some answers from my GI about a liver biopsy I had done a month ago.

By way of explaination, I have had elevated LFT's for a year and a half that was explained away by saying that I must have fatty liver due to also having Crohns Disease (apparently a fairly normal extraintestinal manifestation). Finally, about 2 months ago, my GI became concerned while thoroughly reviewing my labs and realizing that although my LFT's seemed to rise and then drop every rise was higher than the previous rise and I had become increasingly more exhausted over the past 6 months to the point that I could sleep all day. Also, I had a positive ANA and a questionable smooth muscle test. So, he finally ordered a liver biopsy, the results being "mildly chronic hepatitis" - "inflammation 2/4 and fibrosous 1/4". The only good thing I could discern was that I was negative for Hep. A, B and C as well as having any problems with my bile ducts.

So, that brings me to tonight. I finally get in to see my GI tomorrow and hopefully learn what this all means exactly and/or what is suspected and what our next course of action is. Obviously something fairly significant going on and I suspect autoimmune hep. but don't know for sure.

I can tell you that after all of the years of being given the run around until I was finally diagnosed with Crohns, I am not taking "I don't know" for an answer!

Anyway, thanks for allowing me to finally unload all of this pent up worry and frustration. After reading your posts over the past couple of weeks I can honestly say that its great to see that there is another wonderful group of supportive people here at Healing Well.

Thank you for sharing your experiences. I hope that you are all having a good day and wake up tomorrow feeling better than today! :)
35 year old female living in Ontario, Canada. Recently married and have a wonderful 9 year-old son. Diagnosed with Crohns in '92. Have had 3 small bowel resections. Previously diagnosed with Degenerative Disc Disease. Also diagnosed with RA and Fibromyalgia.  Recently diagnosed with possible autoimmune hepatitis - waiting for confirmation or new diagnosis.

Co-Moderator for Crohns Disease Forum

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hep93
Elite Member


Date Joined Jul 2005
Total Posts : 12014
   Posted 5/17/2006 10:04 PM (GMT -7)   
Deedee, welcome to HW hepatitis forum.  I'm glad you came out of lurkdom!  :-)
 
It does sound as though you might have autoimmune hepatitis.  However, don't get upset if your hepatologist is unable to determine exactly what you have.  This does happen occasionally.  I have respect for doctors who admit they don't know, rather than making guesses and putting you through unnecessary tests.
 
Please come back to the forum and let us know what you were told.
 
Hugs,
Connie

deedeerose
Veteran Member


Date Joined May 2005
Total Posts : 1117
   Posted 5/18/2006 11:24 AM (GMT -7)   
Thank you Connie for your reply. Unfortunately, you hit the nail right on the head. My GI is unable to determine exactly why I have hepatitis. But he also is not doing any further investigation. He said that the likelihood of it progressing to cirrhosis in the next 5 years is minimal, however, that is not to say that 10 to 15 years from now it won't. He does not want to investigate further, nor does he think it needs to be treated other than to continue taking the Imuran I am on for my crohns.

As for the exhaustion, it is to be expected and I will just have to live with it.

I also have very mild fatty liver and he is suggesting that I modify my diet. Now keep in mind that I have active Crohns Disease. While I am not your "typical" Crohns looking patient thanks to previous prednisone use, I honestly hardly eat. It is much to painful. He doesn't seem to believe me tho. He "suggested" that I actually write down what I eat and thinks I would be surprised! I couldn't believe it. I don't eat anything during the day usually because I do try to work full time and I can't when I eat because I am too cramped up and running to the bathroom. I have a very small dinner and a small snack around 8 or 9 sometimes. That is it! My husband was incredulous when I told him what happened.

Anyway, I am now looking for a second opinion which I realize will take some time.

Thank you for listening to me.
35 year old female living in Ontario, Canada. Recently married and have a wonderful 9 year-old son. Diagnosed with Crohns in '92. Have had 3 small bowel resections. Previously diagnosed with Degenerative Disc Disease. Also diagnosed with RA and Fibromyalgia.  Recently diagnosed with possible autoimmune hepatitis - waiting for confirmation or new diagnosis.

Co-Moderator for Crohns Disease Forum

Please help support Healing Well.  http://www.healingwell.com/donate/


hep93
Elite Member


Date Joined Jul 2005
Total Posts : 12014
   Posted 5/18/2006 9:48 PM (GMT -7)   
Deedee, I think you definitely should get a second opinion. It couldn't hurt, and might help.

Connie

Marg57
Regular Member


Date Joined Dec 2005
Total Posts : 446
   Posted 5/21/2006 8:47 PM (GMT -7)   
Hi DeeDee,
I think it's common for people to suffer from more than one autoimmune disease. When do you get the results? It takes so long for a diagnosis in these cases. I just hope that when a general practitioner sees an autoimmune disease he/she files that info away so some later patient may not wait so long. What else do you take for Crohns apart from Imuran? I took that for about twelve months for AIH (with Prednisone) but now take CellCept with Prednisone.
Keep us posted once your results are known.
Marg
 


deedeerose
Veteran Member


Date Joined May 2005
Total Posts : 1117
   Posted 5/22/2006 2:26 AM (GMT -7)   
Marg, thank you for your reply. I received the results from my GI on Thursday. All I know is that I have non-viral hepatitis as he says the bloodwork is inconclusive as to the reason.

I am now in the process of getting a second opinon from a well known clinic in a hospital in Toronto. It will take some time to get the referral and then appointment but I feel better for doing something.

I only take Imuran for my Crohns. I don't know how well it is working as I still have horrible symptoms but I can not tolerate any of the stronger meds for one reason or another. Humira would be my only other option, however, it is not yet available in Canada for Crohns.

I was on Prednisone for 10 months up until a year and a half ago and it reeked havoc on my body and did nothing to improve my situation.

Thank you for your support and I will let you know when I know something. :)
35 year old female living in Ontario, Canada. Recently married and have a wonderful 9 year-old son. Diagnosed with Crohns in '92. Have had 3 small bowel resections. Previously diagnosed with Degenerative Disc Disease. Also diagnosed with RA and Fibromyalgia.  Recently diagnosed with non-viral hepatitis - exact cause unknown.

Co-Moderator for Crohns Disease Forum

Please help support Healing Well.  http://www.healingwell.com/donate/

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