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signer1
New Member


Date Joined Nov 2005
Total Posts : 4
   Posted 11/8/2005 12:58 PM (GMT -7)   
Hi,
My name is Dottie and I was diagnosed with AIH in March 2005 after many tests, liver biopsy , cat scan and just about anything else that is done. 
Was on Predisone, liver stats went back to normal. Weaned off while starting Imuran.  After 1 month of being off prednisone, liver count was up (slightly)  Now back on Prednisone (10mg) with the Imuran.
But I have a question on the prednisone.  When I take it I feel great, my allergies and swelling of my eyes seem to go away.
I look more normal when I take it than being off!!!
I am now on 10mg a day.  What dose creates "moon face" and does it take a long time to get to that appearance??
Does everyone react in the same way???
By-the-way, I never had any symptoms of AIH.  My doctor was just doing my regular blood work and found liver counts at 400.
however...he had put me on Lipator (sp?) in Sept 2004.  The blood work was done Jan 2005. 
My doctors say it was not the Lipator.  I used to take high doses of Tylenol for knee pain.  They don't think that was the problem either.
Actually, both doctors say that they have no idea how anyone gets this disease.  Are there no theorys or ideas???
Sorry for the long post, I'm just so frustrated.
I'm tired of being tired.  I look forward to taking the steriods now because they make me feel so good, but my friends scare me about the terrible side effects of the drug.
Welcome any thoughts.
 
 
Edited to add title smurf

Post Edited By Moderator (~Jennifer~) : 11/8/2005 1:24:36 PM (GMT-7)


Cazza
New Member


Date Joined Aug 2005
Total Posts : 12
   Posted 11/9/2005 12:42 PM (GMT -7)   
Hi Dottie,

Prednisone is a life saving drug that can work wonders, but you really don't want to be taking it unless you absolutley have to!
I had AIH (well, I never actually found out what the cause of my liver failure was, but it seems that may have been the cause, as I have had other auto-immune disorders) and also had Graves disease which made my eyes protrude. When I went on Prednisone, it did help my eyes, and did perk me up. But this isn't reason to take it any longer than absolutely neccessary. Saying that, your doctor would only ever prescribe you the lowest dose possible to minimise side effects, so being on 10mg, you shouldn't need to worry too much.
I recently came off prednisone and found out I now have a deficiency. My body is not produing enough of it's own cortisone, so I will have to take hydro-cortisone for the rest of my life. I have only just found this out, and don't know the cause of it yet (waiting to see specialist) but it's either yet another auto-immune disease of my adrenal glands, or possibly because of being on a high dose of steroids and coming off them suddenly - your body stops producing it's own when you take them orally.

I don't mean to scare you, but steroids are a very powerful drug and the risk of side-effects has to be balanced against the risks of your illness. Saying that, they helped to save my life!

People with one auto-immune disease are usually (though not always) more prone to getting others, it's kind of like a disorder of your whole immune system. I've heard it can be triggered by an infection of any kind, when the body cretes anti-bodies to a particular virus for example, they match the shape of the virus and latch on to them. What sometimes happens is these anti-bodies also happen to very closely match the shape of your own cells - the cells of your liver for example - and so latch on to them too, which means your immune system is attacking your own body. Talk about being your own worst enemy! Why this happens to some people and not otheres thoug is unknown.

I guess you may have become a little addicted to the feeling you get when on steroids? If you feel really bad when you come off them, maybe you should mention this again to your doctor, as you could also have a deficiency (don't mean to worry you, it could just be a temporary thing)

You say you never had sympotms of AIH, but feeling tired is definately a symptom, so maybe when you come off the steroids it's the AIH you're feeling rather than the steroid withdrawal?
Sorry for the length of this post, I just thought I had a few ideas which might help you as I think I've been through something similar,

Cazza

SusieM
Regular Member


Date Joined Oct 2005
Total Posts : 71
   Posted 11/9/2005 6:44 PM (GMT -7)   

Hello, I was reading what you were writing.  My husband has had HCV for 30 years, so I thought I would pop on here and read.  He contacted the disease through blood transfusions during the loss of his arms at 24 years old in an electrical accident.  What you both have said is really interesting.  Read what I have written under Chronic pain and you will know more about me.  My name is SusieM.  I too have Graves disease since 1985.  Because of DDD and multiple injuries to my back and neck I have had to take steroids too.  I found out after taking a Kenalog shot for pain that it did clear up all my allergies and hayfever!  And it made me feel wonderful and energetic too.  I feel so good after a shot for about 6 to 8 weeks.  I go from being a cripple, creaking, feeling ancient and old to feeling so much better.  Where I couldn't get out of a chair without pain I can get up just fine!  You're right, doctors do not want ot give more than 2 shots a year really, but mine will give me three.  I only recently read as you said that we do produce these steroids naturally, but because of our autoimmune diseases we don't have enough production in us.  The article went on to say that it wasn't as dangerous as some think to have a little hormonal/steroid replacement because we do produce this normally in our bodies.  I think what we have to realize is what is enough and not to do too much!  I know what you mean about moon face.  I get one sometimes after too many injections.  But it doesn't last.  Like yesterday I had an injection in my left wrist for severe tendonitis.  I know it must have been quite a dose because it took away some pain I was also having in my back and legs!  It also causes my blood pressure to rise and makes my face red.  It gave me a moon face as I look at myself today.  As the drug lowers over time I return to look normal.  Atleast, so far I have.  I did have a friend that died at 46 from lung arthritis!  Her lungs were crippled.  They gave her mega doses of prednisolone over about a year.  Y'all, she went from being about 135 pounds to 180 in no time.  She did get the moon face and she was also dead within one year!  I have always thought that the mass doses of steroids they had her on helped kill her quickly, but I do not really know.  I just seen this young woman go from beauty to beast in less than a year and she died.  It was a shock to everyone that knew her!  So, I would be willing to bet that we do need to watch out for ourselves and take just enough to do what works for us, but not in mega doses.  I know the shots help me.  I feel as if I am young and energetic.  I feel strong and it does give you a high.  It does work on the brain too.  My dotor told me this.  He said, "Young people come into his office begging for Kenalog shots."  This is after I told him that it made me feel so good.  He said many young adults are wanting the shot to give them the high.  well, I am sure it affects everyone differently.  Several years ago my son wanted to take me on a trip to Orlando.  I was hurting so bad I didn't think I could make it.  I couldn't get in and out a car without taking 10 minutes to straighten up to walk.  And then I had to think to put one foot infront of the other!  The day before the trip I went and had a Kenalog shot.  Honestly, it cleared all my sinuses and I moved like a kid.  I was even able to pull my own baggage!  But, I had a great time and was able to keep up with my 28 year old son!  Ha! But, you really do have to be careful on these drugs.  You can really hurt yourself, which I know I have over the years, continuing to work as a dog trainer when I should have retired 10 years ago from the business because of my bad back and neck.  I didn't want to give up the money I made and the living I loved.  But I have suffered terribly because the extra years took a toil on my body.  The shots still help, but they don't do what they did because I am so messed up!  Please be careful.  I hadn't thought about my eyes not hurting as much from the graves while on steroids, but now that you mention it you just may have a point!

Nice sharing....Blessings....SusieM


Chronic Pain, Fibromyalgia, Graves Disease, Degenerative Disc Disease, multiple disc bulges, extruding disc, severe degenerative spondylosis/stenosis, carpal tunnel/numbness severe in right hand and severe tendonitis in left wrist.


signer1
New Member


Date Joined Nov 2005
Total Posts : 4
   Posted 11/9/2005 9:46 PM (GMT -7)   

Wow, you guys are great!!  So much information. I have never heard of kenalog..is it used for AIH too??  I know I need to be careful of the steroids, but they make me feel so good.  I, too have my own business and I need to keep working.  To work when you are tired and aching is no picnic.  I get to feeling depressed and that makes me even more tired.  I am not used to having to slow down.  Sometimes I just want to sleep all day.

Does AIH ever go away???  I had a frend with Lupus and after 5 years it was gone. 

Thanks again for the replys.  I don't know anyone with this condition, so I don't feel so alone anymore.


Cazza
New Member


Date Joined Aug 2005
Total Posts : 12
   Posted 11/10/2005 7:44 AM (GMT -7)   
Wow Suzie, it sounds like you've been through a lot. I'm guessing you must be very familiar with the daily ups and down of taking a lot of medication? With powerful drugs like steroids it's all aout finding the right balance as they could do you more harm than good in the end - including making you very fat!!

As for AIH Signer1, as with a lot of auto-immune conditions, I think they can go into a sort of remission. I had Graves disease as a child, but really only had to take medication for it for a year or so, and then have had no further problems with it, other than with my eyes. I think that AIH in most cases can be brought under control with drugs. Mine is a very unusual case, as although it seemed likely that it was AIH, they never found the anti-bodies they were looking for as proof of AIH, and I ended up having a liver transplant. Don't worry though! There is no reason this should happen to you - I think transplant is pretty rare in AIH, and I still think there were other contributing factors that led to my transplant that they didn't pick up on, like a virus or something. By the time I received any treatment my LFTs were way above yours, and I think no matter what I was gonna end up with liver failure.
I was told that with AIH it sometimes can take a long time, but eventually with the right treatment you can lead a very normal life. I'm on immuno-suppression now which should keep auto-immune diseases under control, but now I've been told I may have this new one affecting my adrenal glands so I'm confused!!

Carrying on through fatigue and exhaustion is one of the most difficult and stressful things you can do in life, so I wouldn't blame anyone in that situation looking for steroids as a pick-me-up. Personally I always hated them because of the hairy cheeks and moon-face it gave me - perhaps I'm too vain but it was enough to put me off!!

signer1
New Member


Date Joined Nov 2005
Total Posts : 4
   Posted 11/10/2005 11:38 AM (GMT -7)   
Well, I noticed the hairy cheeks...I now cut them close to face with sissors (sp?) I refuse to shave
 Moon face???..well chipmonk cheeks can be cute too !!
Your someone like me who has been healthy up untill now (I am 58) it makes such a differance in my life and thoughts.
I truly appreciate all the time taken to respond to my posts. I am also the type that wants ANSWERS about this disease and it seems that I have to accept the fact that no one really knows why or how a person AIH.
I read with some sorrow that there many people in such a severe medical state.  My thoughts go out to them..and I am trying to count my blessings every day as I could be in much worse condition. 

lerie
Veteran Member


Date Joined Nov 2005
Total Posts : 966
   Posted 12/22/2005 11:01 PM (GMT -7)   
Hi dottie.please be carefull of the prednisone & the tylonal. I have severe advanced cirrosis from tylonal. I went into drug induced liver failure in late 96 & went into commas 4 times 97 & 98 stayed stable since 2000 but startet going down hill this past sept. I have bone dammage from the prednisoe. I'm not a Dr. but in my case the prednisone always disguised my liver tests. when on it my lft was fine, when off it they were out of whack. Didn't know the condition of my liver for sure till I actually went into liver failure. Please use caution with all medications.I'll be praying for you. later...
lerie

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