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Posted 1/31/2012 10:40 AM (GMT 0)
Hi All

         I was diagnosed with AIH in November 2011 after 3 years of being continually tired-I put it down to having an 8-5 job,overtime,being on call 1 week in 3 and getting up to 15 callouts a week ,all after hours, and studying 6 nights a week-all at once.

  After several months of blood tests,culminating with my iron levels getting up to 1200 (not sure of the units),I was referred to a liver specialist.I'm not sure if I rate liver biopsy as more fun than a ruptured disc,root canal or stitches through the fingernails(I've had all these) but if a doctor says it'll cause mild discomfort, my question is "do you know this from personal experience?"

  Anyway-it appears I'm about 3 years in when I was diagnosed.After 2 weeks on 40mg Prednisolone,the dose went down to 20mg.I have my 2nd review tomorrow so I'm hoping for another drop in dosage.Almost feeling normal these days other than side effects.

  As far as side effects-2 days of euphoria,definitely manic!A week of constipation,some slight headaches ,mild abdominal discomfort depending on what I have eaten, and acne worse than I ever had when I was  a teenager!Also my sex drive nosedived,but that's bearable as my long time partner has hit menopause,so we are sort of in synch!And too much fruit gives me chest pain.

  Out of curiousity,are there many other guys out there with this?My specialist says he hadn't had a case in 15 years then got 2 guys in less than 6 months!

   I think that's all for now

Dave

Posted 1/31/2012 4:19 PM (GMT 0)
Hi, Dave, and welcome to the forum! A biopsy is not my favorite thing, either, though I have to say that the last one I had a couple of weeks ago wasn't too bad. I'm also very familiar with the side effects of high doses of Prednisone. My face also peeled, as well as my feet and lower abdomen.

One of the moderators here, Dany, has AIH. I will alert her to your post. Meanwhile, you can use the search feature in the blue bar above to look for other posts pertaining to AIH.

As far as I know, you are the first MALE member here with AIH. So you are special.

Hugs,
Connie
Posted 1/31/2012 4:28 PM (GMT 0)
Good morning Ironman64,

You really need to get the liver biopsy to confirm AIH. The procedure is painless. I really had no discomfort from the test. I was a little sore after the procedure, but nothing more than what you feel with bruising. I am assuming that your liver enzymes have been elevated for quite some time....right? My biggest symptom was fatique also. Take care and get that biopsy.

Gizzy51

Posted 1/31/2012 5:40 PM (GMT 0)
Gizzy, I believe he's already had it. He was referring to the procedure as worse than a root canal, etc. Some do have a bad experience. I did, with my first one being awake. I had another during a rt. lobectomy, but was knocked out for that. The 3rd one was recently and wasn't bad at all, as the radiologist numbed me deeply.

Hugs,
Connie
Posted 2/1/2012 12:23 AM (GMT 0)
Bump.

Posted 2/1/2012 12:41 AM (GMT 0)
Hello Dave!

Welcome to HealingWell!  You're lucky you were only on 40mg for 2 weeks.  I spent 5 weeks there then 4 wks on 30mg then 4wks on 20mg...so I went through severe hyperactivity which was great for work but the insomnia was not so great for my psyche!  I also had a good amount of irritability.  The acne, "back"ne, moon face and hump on my back...all went away when I got to 10 mg. I gained a good amount of weight but it's definitely easier to lose on the lower doses...I just didn't try that hard until I was off the pred altogether.  I still have a few pounds to go but I don't stress myself out about it.  I had the opposite effect on sex drive but I was on higher doses for longer.  Glad you found the positive side to your dereased libido!

It is a lot more rare in men but there are others.  You can email me (click the email envelope under my name to the left) and I'll let you know where to find some others to chat with. 

Are you on an immunosuppressant as well?  If not, ask about that tomorrow!  They are considered "steroid-sparing" drugs and will help to safely wean from the pred minimizing the risk of a flare.

You should be on a proton pump inhibitor while on the pred.  Pred will eat at your stomach lining.  So please discuss this too.  Also....you should request a bone density test to establish a baseline and you should discuss a multivitamin and a calcium supplement.

I have a, very rare for me, cold and my head is killing from the coughing so I'm signing off but I'll check back later. 

Ask any questions you may have!

Posted 2/20/2012 9:58 AM (GMT 0)
Thanks for the support  All.

   recent visit to specialist and all the bad stuff is down,all bar 2 at normal levels.Another visit soon only this time I'm going to ask for  a printout of previous results.Current drugs-Prednisolone 10mg.

 Time to surf the forum

cheers

Dave

Posted 2/20/2012 5:14 PM (GMT 0)
That's good news, Ironman! Be sure to ask your doc about a proton pump inhibitor (Aciphex, Protonix, Nexium) as Dany mentioned, to protect your stomach.

Hugs,
Connie
Posted 2/22/2012 3:34 AM (GMT 0)
Dave,

Has your doctor discussed immunosuppressants with you?  I'm surprised you aren't on one.  Did you ask at your last meeting?  In the longterm, it's better to maintain on an immunosuppressant than remain on the pred.

Glad to hear your numbers are better!

Posted 2/23/2012 3:12 PM (GMT 0)
Hi Dave

You asked if there was anyone here with AIH.
I have got it as well as some other autoimmun issues.
My AIH is under controll after 10months of preds and added to that chloroquine as I can´t take azatioprin for my pancreas.
As Dany is saying i think you also should have some maintainence med!

Ask for it, this disease have the habbit to come back again if taken of meds.

Take care!
Posted 2/24/2012 6:38 AM (GMT 0)
The relapse rate is approx 75% when off all meds.  Some people can be off them but if the initial presentation of the disease is more severe, as it sounds like yours was, it's more likely that a subsequent flare will occur.  As I've heard from others, no personal experience because I haven't had a flare yet, subsequent flares are more difficult to get under control.  So avoiding them is key...most people avoid them by being on an immunosuppressant.  It's best to speak to your doc about it.  Far less side effects from the immunosuppressants than the pred.  The long term risks are also better...granted they increase cancer risks for certain cancers but pred is more of a guarantee for causing issues long term...
Posted 3/25/2012 5:05 AM (GMT 0)
Hi All

       latest news is I am now on 50mg ofAzathioprine and 10mg prednisolone,fortnightly bloodtests currently with a view to getting off the Pred.Still tired, but the dreaded Backne is finally clearing up.I have also been referred to an exercise therapist and a dietician.I have another visit with the Hepatologist next Wednesday to see if the Azathioprine is doing its thing and where I stand with the Pred.My Clinical nurse has also suggested I ask about Flu and Pneumonia shots too.Feels a bit odd having all these medical people telling me to ask the other medical people about stuff.

    My main worry now is getting my strength and stamina improved-I've been finding that I can't climb around in rooves (roofs?) like I used to.I was shaking when I came down out of a roof at work last week after being up there for about an hour-I used to do this all day,every day.Thankfully my Bosses have said that I can have a younger fitter lackey to do this now!

   At least my sense of humour hasn't shrivelled with my liver!

   Hang in there All,

   this life still beats the alternative

Dave

Posted 3/25/2012 3:20 PM (GMT 0)
Dave, it sounds like you are getting stabilized. However, anyone who has any form of liver disease is going to find that life is not what it used to be. This is a new normal and a new Dave. Great that you are able to work and that your boss is willing to compromise on your job duties.

Hugs,
Connie
Posted 3/25/2012 7:29 PM (GMT 0)
Hi Dave,

Sounds like things are going really well.  You probably don't need to have bloods done that frequently.  If your numbers are normal, once a month should be fine.  My docs always recommended the pneumovax and flu shots...I'm just not so good about getting them and I haven't had a problem.  Once I got to 10mg pred, a lot of the side effects were finally gone too!  Remember that once you get to around 7.5mg (which is more than likely your next dose) or 5mg pred, the wean should be super slow.  Your adrenal glands need some time to wake up and take over endogenous production of natural steroids.  Weaning too fast at that point can cause you to go into adrenal insufficiency which I hear is awful!

Getting some exercise daily really does help too...even if you only go walking for a bit.  Are you taking calcium?  Have you had a baseline bone density test?  The exercise will help with your bones as well...pred causes bone thinning, that's why I ask.

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