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AIH, PBC, prednisolone and exercise

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Posted 8/13/2011 8:31 PM (GMT 0)
hi peeps,

new on here.

I was diagnosed with PBC then AIH, and am cureently on prednisolone and azothiaoprine.

I have been following a low calorie, low fat, low carb diet and exercising like daft for months.  I dont feel like i am getting much fitter and i am not loosing any weight.  Has anyone else had similar experiences??

would really like some others experiences as when i say to the specialist and the GP their response is 'at least you aren't putting on weight'.

I am however getting a bit of a fat face.

Just wish i knew if i was wasting my time or if when i finally get off the streroids the weight loss and fitness will quickly improve. confused

oh smurf just cause i likes the smurfs!!!

Posted 8/13/2011 8:45 PM (GMT 0)

Hi, Elmo, and welcome to the forum!  I can tell you that the pred is what is causing the "fat" face.  It's commonly known as "moon face."

My co-moderator, Dany, has AIH and is very knowledgeable about the meds, exercising, etc.  I can tell you that she exercises (participates in runs for charities), but is no longer on pred.  I will alert her to your post and I am sure she can offer some insight.

Hugs,

Connie

Posted 8/13/2011 8:49 PM (GMT 0)
thanks connie.
appreciated
Posted 8/13/2011 10:33 PM (GMT 0)
Hi Elmo welcome

Having AIH ( and other autoimmun diseases) I´ve been on preds fore 3 times. One of wich i were training 5 days a weak for about 1-1,5 hours every time, both exercise and strenght. But i gained weigth anyway. I gained 12 kilos. I lost all of them after about 6 month-1 year after have stoped eating the preds. Sometimes wondering how much I would have weigh if i haden´t been exercising at all.
But I don´t think that exercise is a waste anyhow. In my case I got rid of some of all the energi/overenergi the preds gave me at least in the beginning.
Personaly I don´t think it´s any use to try and loose weight while on preds but perheps not gain any more if it´s possible.
Good luck!

"abroad"
:-)
Posted 8/13/2011 10:48 PM (GMT 0)
hi this..
i am the same with the exercise, at least 1 hour and at least 5 times a week. Sometimes double or triple the time. I am petrified to stop exercising as i figure i would have lost about 3 st by now which makes me wander how much i would have put on, and the thought that it will take so long to loose weight when off the steroids makes me a bit miffed. I had hoped it would drop off faster because i have been exercising. I just dont understand how there can be science that says if you eat less calories than you burn.......significantly less. how can you not lose weight. It doesnt make sense and i just don't get it at all. i have read the book coping with prednisolone but that doesn't really answer why.
after 6 months i thought i would be sooooo much fitter etc. i know the steroids are meant to affect muscle weakness but really with this amount of exercise.
Posted 8/13/2011 10:53 PM (GMT 0)
Hello Elmo!

If you have the energy for the exercise...it is great to continue.  It will help you avoid the usual weight gain to some degree.  Prednisone is notrious for weight gain.  The weight does come off after it's discontinued but it does take some time.  I had most of the common pred side effects (including the hump back fat pad just below the back of my neck...real pretty  smhair  ).  Now I am 9 pounds from my presickness weight although I haven't been killing myself to get there.  I did gain 45lbs while on the steroids though.  Once I got to 10mg all the side effects went away and the weight gain stopped...but it was near impossible to get off while on the pred.  So I agree with your docs....at least you aren't gaining weight rolleyes    You want to try to avoid fatty liver disease.   I did have the moon face as well as the accompanying acne and back-ne.  It does all go away and I have been very lucky in my responses to the meds.  I lead a fully active life and really haven't made drastic changes to my diet either.  It's working for me (I'll never give up chocolate  nono   and carbs) so fingers crossed it keeps going well.  We all just do what we can to avoid the flares.

So are you on Urso for the PBC?  I'm on urso but only because it was possible that the aza was causing cholestasis and I didn't want to lower my dose and risk a flare so I opted to treat my symptoms instead wink .

Welcome to our forum!!

Posted 8/13/2011 11:11 PM (GMT 0)
i was on urso to start with after the original diagnosis of pbc but my liver function only improved for a couple of months then got really bad again. It had been diagnosed by a biospy so they looked at it again. confirmed it was pbc but the specialist wasn't convinced as i had all the markers of AIH as well. I was taken off urso and put on a steroid.....again liver function improved for a couple of months then back to square one. Henced the prednisolone. Azathioprine was introdced and since i have responded well to that and my liver results are in normall range they are trying to reduce the steroids but it is such a long process and i dont see myself being off them by Christmas. I am getting so down about it and because the dose is lower the energy levels i have, have dropped. Like i said i am scared to reduce the exercise.
I have the moon face and also the hump on my neck and my body has totally changed shape......not sure if all steroids or mixture with exercise. i am running out of motivation for the diet too.........its all very well for docs to say that at least i ain't putting anything on, but i am quite sure if they put in the work i have over the last 6 months to be the same weight and no fitter i think they would have turned to pizza long before now!!!
sadly my feet have lost weight so the only thing i always knew would fit now don't.....shoes falling off, rubbing and ouch!!!
i am quite sure my mates and family are fed up of me moaning but frustration doesnt cover it really, and to be honest, i am fed up of feeling this way too.....although the book i read did say that negativity etc was a common side effect too.
its a good book but still doesn't give all the answers you want.
Posted 8/14/2011 1:55 AM (GMT 0)
Hi Elmo,

I have been on prednisone since 1990 when I was told I had autoimmune hepatitis. Tried imuran, but it screwed up my blood counts. In 2004, I was referred to a new hep doc who told me I never had AIH, but rather a very rare hepatitis called post infantile giant cell hepatitis. My biopsy in 1990 had shown that, and he did a repeat biopsy in 2006 to confirm it. The only drug that would lower my enzymes was prednisone.

I gained 80lbs while on the drug initially. My doctor was able to wean my dosage down to 5 mg a day two years ago and since then, with 1hour of daily exercise and a low fat, protein, calorie and sodium diet( By the time my hepaitis was discovered I had some cirrhossis)I have dropped 40 lbs. I never had the moon face. But I do have the shoulder hump, small cataracts, and osteopenia. I did not have the mood swings but now, I have Hepatic Enephalothopy due to the Cirhossis.

My advice is to work with your doctor to try to wean off it as soon as is pratical. Being on it long term, at any dosage, is no picnic.

Susie
ESLD/Cirrhosis
meld 14

Q

Post Edited (susie_sassafrass) : 8/13/2011 7:58:22 PM (GMT-6)

Posted 8/14/2011 7:26 AM (GMT 0)
Wow susie, I have never heard of that form of hepatitis. What's the difference. I can't believe your biopsy showed that and they didn't tell you for so long.
I realise I have been lucky as I am responding to the azathioprine which is allowing my steroid dose to be reduced and I am on calcium and vit D for my bone density which was normal at the scan.
2 years to loose 40lbs is quite a long time. Putting on 80lbs wow, I do realise how lucky I am to be maintaining my weight it is such hard work though. Well done you in managing to lose half of it again.
smilewinkgrin
You say you are on low fat, salt, calorie and protein diet. I understand all parts of that except the protein. I have been eating medium amounts of protein. I would worry what to eat if I didn't.
As for the mood swings....it is madness. I have never been a hugely emotional person but will now cry at soap operas or get really ragey in a cagey for no real reason.
Thanks for sharing your experience! Much appreciated. :-)
Posted 8/14/2011 1:21 PM (GMT 0)
They don't know what causes my hepatitis so they call it idiopathic or cryptogenic. I do not have the autoimmune markers patients with AIH have. It could be related. Not a lot of research has been done on my type since it is so rare. I am the only adult my transplant center has seen with it. Yes, I was shocked when I was told, but I guess since I responded to steroid treatment, it was easier to refer to it as autoimmune.

I should have been more specific. I limit my protein from beef and pork especially because I suffer from HE. I do eat Greek yogurt and I drink a Boost nutritional drink for additional protein. Also, I don't eat meat every day. I eat a lot of salad. I do miss my steak and ribs, oh well!

Recently, I have hit a plateau. That is why I haven't lost more. I am trying to up my exercise to 90 minutes a day to see if that will break the log jam. I don't walk extremely fast so I burn my calories by how far I walk. I fell three times last Fall and am recovering from 6 hospitalizations from December-May due to kidney stones and a tips procedure. I am finally feeling somewhat my normal self, now.

if I could get off the pred without my enzymes soaring, I would do it in a heartbeat.

Susie
Posted 8/14/2011 6:20 PM (GMT 0)
Hey Susie,

I was curious...did they ever check your SLA (soluble Liver Antigen)?  It isn't checked regularly with AIH but it is the only one that's positive in Type 3 AIH.  Apparently, Cytokeratins are also positive but again, they dont' usually check them.  It was always my understanding that the only form of hepatitis that responds to steroids is AIH.  Being that giant cell hep is super rare, they just may never talk about it or lump it in with the others...?

Are those of you still on pred also on a proton pump inhibitor for your stomach?  Pred is really harsh on stomach lining.

As per your exercise/weight loss plateau, try changing up the type of exercising your doing.  Muscle memory causes a lot of exercise plateaus.  So if you only really walk then try swimming or light weight lifting, if you can.  Cycling is good too and low impact.  Your 40lb weight loss is fantastic!!

Posted 8/14/2011 7:02 PM (GMT 0)
I don't remember an SLA test. I did have the blood test for antibodies. (Ana?) I take 5 mg a day, and it keeps my enzymes just a little bit elevated. Two years ago, I was put on Nexium once a day because I had a stomach polyp found in an endoscopy. This past winter I asked my doc if I could go off the Nexium as I am now on expensive medication for HE (Xifaxan )and Nexium is not cheap either. I have a Part D Prescription Plan. I now take the Nexium on a as needed basis. My last endoscopy was clear last September, But I do have a hiatal hernia and suffer heartburn occasionally. So instead of taking it every day, I take it once or twice a month. It lasts longer.

I used to be a competitive swimmer in my youth so I will have to see when the local Y is having a membership deal. I am now eligible for our local dial-a-ride service to get me there since the docs won't let me drive due to the HE. Probably would start off once or twice a week.

Never heard of AIH 3. I try not to do too much Internet searching on my form of hepatitis because there is not slot there and some info is too discouraging to deal with along with my end stage liver disease.

Susie
:-)
Posted 8/14/2011 9:05 PM (GMT 0)
Susie,
Why not switch from Nexium to omeprazole the generic brand. There's no difference, except it's way cheaper. You need to take it daily for it to work properly.
Posted 8/14/2011 9:48 PM (GMT 0)
David,

I did not realize I should be taking it because of the prednisone. Since the hep doc allowed me to go off the daily Nexium in January, I now no longer take inderal because of my tips in February. Do you happen to know what the OTC brands are called? I have an appt with the hep doc on Friday so I will ask him about it. Maybe he will put me back on the daily omeprazole, and I can take the OTC version. if he insists on Nexium, I guess it would not be the end of the world. I am in the catastrophic phase of my Part D. Plan at this time, anyways.

Susie
Posted 8/15/2011 1:30 AM (GMT 0)
Omeprazole is the generic name. Nexium and Prilosec are the name brands. Walk in to any drug store and ask for omeprazole, or ask for generic Nexium, it's the same thing.
Posted 8/15/2011 3:24 AM (GMT 0)
Susie,

Or Prevacid (Lansoprazole).  It recently became OTC and you can get it at Costco too wink

The ANA is the first test they do when they think something is autoimmune.  It used to be called the Lupus screen...since Lupus is the umbrella, big daddy of them all!  So that's usually the first to show up positive.  Although, I was also told that there is a small percentage of people who have a positive ANA and nothing ever develops.  Anyway, the other ones are SMA, LKM-1, AMA.  But I looked up the other one when the little light bulb in my head went off that I had read about AIH type 3 a long time ago.  It wouldn't hurt to ask about the other antibody tests.  You wanna make sure they are treating the right disorder and if there's a question, it'd be good to have clarification.  And when you stopped being able to take imuran, did they not suggest another immunosuppressant?

Posted 8/15/2011 3:41 AM (GMT 0)
The docs have never tried to put me on another drug. They liked the results the prednisone was having on my enzymes and tried to wean me off it over time. The last two times when they tried to go to 2.5 mg per day, my lfts shot up. Maybe, it is time to revisit a try. I had Cirhossis already when I was first diagnosed in 1992 because they think I developed this hepatitis sometime during my youth. Thank goodness I was never much of a drinker because I probably could have killed myself. But, I went undiagnosed a long time since my only symptom was fatigue. Thankfully, when I came down with Lyme.s disease, a sharp doc picked up my elevated lfts.

I will ask the hep if I have had these other autoimmune tests since they don't know what causes my hepatitis.

Thanks.

Susie
Posted 8/15/2011 7:43 PM (GMT 0)
ow wow guys, i didnt have any major problems that require omazrapole. I guess you all are in america too. I am in Scotland so luckily i dont pay for medication, we get free prescriptions on the NHS. It sounds like my AIH was caught a lot earlier than for yous, or at least i believe so. i dont think i have cirrhosis yet. I think it was my fatigue that prompted the tests and resulting referral to the specialist.
As for anti body tests.....i know that was something the specialist followed up on as he wasn't convinced i had PBC because of other markers......i don't know which ones etc. you all seem a lot more infomed than i do.
and to think it was answers about why or how the steroids were affecting me that was my initial question.
I wander if anyone has been lucky enough to be only on aziathorpine having been taken off the steroids. I feel i am getting tired again now that the steroids are reducing.
Posted 8/16/2011 10:16 PM (GMT 0)

Elmo,

I've been off steroids since Dec 2008.  Only on 100mg azathioprine...knock on wood, my labs are completely normal.  I have some anemia but my scopes came out fine so no bleeding.  We'll wait til my next scheduled bloods to see if the anemia is stable or has changed.  It isn't iron related as I've been on iron supplements for 5 yrs now.  Not feminine bleeding related either as I have a Mirena IUD and that nearly stops bleeding...so we'll see if they sort it out if it even needs sorting. eyes

When were you diagnosed?  How long have you been on meds?

Posted 8/17/2011 9:21 AM (GMT 0)
Elmo

I´m not on Azathiprin (because of sideeffects) but on chloroquine (more unusuall but effectfull) so one can be off the preds. In my case I had to have chloro together with preds for 6 months before we could take off the steroids by the end of 2008 ( were on preds for the hole year). Now it´s only chloroquine. :)
The fatigue i think is related to your reducing of steroids, it´ll probably be better in time.

Dany

I don´t know if it´s any help but when I read your answer then it hit me: when my inflammations rising. The Hb-levels ( read bloodcells, hemoglobin) goes down. My GI have explained it. He sais that when the inflamation go up the hemoglobin bounds/ties to a protein which makes it lower, not countable so it´s really not an anemi because of bleeding. It´s just that the Hb is uptied at the moment.

"abroad"
Posted 8/17/2011 1:22 PM (GMT 0)
Hi guys,
I got diagnosed with the PBC in March last year. I came off the urso in about Jan this year. I think and put on steroids......can't remember their name. They didn't work so been on pred since march. The introduction of azathioprine was successful and they are trying to reduce the pred. Now at 15mg but been going down in 5mg at 6 week intervals. I am worried that will slow down after I get to 10mg. I see the specialist on the 25th so fingers crossed I will walk out on 10mg. Just desperately want to get off the pred. I know I have been lucky in comparison to many others.....I am getting so frustrated with my body though.
I do hope the fatigue is related to the reduction as it was the original symptom that I had gone to the GP with which prompted all the tests. Turns out I had joint pain and itches too but didn't log the relevance.
Posted 8/18/2011 5:58 AM (GMT 0)
abroad,

My LFTs are checked at the same time as my CBC.  Everything was in the teens, 17ish for both ALT/AST.  So it wouldn't appear that there was any inflammation going on.  We'll see.  It could be nothing and that's just fine by me smilewinkgrin

Elmo,

All my nasty pred side effects started going away when I got down to 10mg.  The slowest wean off the pred is usually around 7.5 or 5mg to zero.  That is by far one of the most important weans to do slowly.  That's when your adrenal glands get "turned back on".  If you wean too quickly you can have adrenal insufficiency.  Are you having lab work prior to each decrease?  Were you on Entocort prior to the pred?  It's a steroid that is becoming more common with AIH treatment as the side effects are less than those of pred.

The itchies are related to bilirubin increases in the blood.  It's easy to look back and say, "oh I had this and that...should have thought something was going on"....but hind sight is 20/20, isn't it?  idea

Posted 8/18/2011 10:33 AM (GMT 0)
:-)

Dany

Glad to hear that there´s no sign of any inflammation going on. Was a little bit worried there.
Wish you lots of "nothing-going-on-at all" in a positive sence.
smilewinkgrin

:-)
"abroad"
Posted 8/19/2011 9:31 AM (GMT 0)
Hi danny,
I really can't remember the name of the first steroid. It was modified release but that's all I remember.
I get my bloods done and liver function tests before my specialist appts so he can decide if to reduce the steroids or not and I was getting bloods done fairly regularly to check on the azothioprine etc.
Funnily enough I am sitting waiting to get my bloods done just now as I have the specialist next thurs.
I have been worried about how long it will take to get off the last 10mg but fingers crossed he puts me down to the 10mg next week.
When you say your side affects started to go away after 10mg did you start loosing the weight or did you mean you stopped putting it on?
Hindsight is a great thing. If only it wasn't in hindsight!!!
Hope things stay calm for you.
Posted 8/19/2011 3:26 PM (GMT 0)

Elmo,

Aside from the "daft" in your name, you said "funnily" and only my British friends say that turn So I'm guessing you're in the UK?

Side effects that went away, hump on my upper back, acne, moonface, extreme insomnia (I am a little insomniac anyway but on the pred I didn't sleep at all), crazy water retention in my legs - including cankles, mood swings/irritability...didn't gain anymore weight.  I think some of the weight started dropping then too.  When you get to 7.5mg the weight thing is a little easier to deal with...especially with all your exercising, you should be fine.  I didn't stress about it at the lower doses because it tapered down slowly.  Now I'm working on it!

Let us know how this blood test went!

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