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Posted 5/11/2007 4:24 PM (GMT 0)
I have been on Prenisode for the last 6 years (varying in milligrams), and it has caused havoc to my life: depression, acne, moodswings and weight gain. My docs have tried Imuran and 6mp but I was not about to tolerate these. I am now on 20 mg of pred. and 500 of Celcept twice a dayand I feel pretty good. We are now starting to decrease the pred. very very slowly (17.5 for 4 weeks, 15.5 for 4 wks etc). My questions are:  - when I decrease the pred. will it be easier to lose weight? (I have been have a hard time)  - will my face slim out? (my doc says I have moon face from the pred.)  - any side effects from the celcept?  - any adivce of any kind? Thanks for your help !
Posted 5/16/2007 11:21 AM (GMT 0)
Hi LilacLuv,
Good luck with your Prednisone tapering. I too take PRednieone and CellCept.
I'll try to answer your questions as best i can, from my experience.

I am now on 9mg Prednisone and still finding it hard to lose weight. I try so hard yet the loss is miniscule. I wish you more success than i have had in this regard.

your face should slim out as the dose decreases. I have been fortunate that my face shape has only "mooned" a little. My sister's face shape returned to normal once she was off Prednisone.

I have had no side effects from CellCept. Only good things have happened.

More advice. Don't be disappointed if the decrease is slower than planned. Over the past twelve months I have taken, 15mg for three months, 12.5mg for three months, 10mg for six months, now 9mg which the heptologist says will be for at least three months. then we're going down by 1mg and monitoring the liver enzyme numbers carefully. There have been times when I left the heptologist and cried in the bathroom before going home because I have been so disappointed my dose had to remain the same. Then I think about how fortunate i am that there is a medication to keep the disease under control. My sister died of another autoimmune disease fifteen months ago. It helps put things in perspective.

Keep us informed of how things are going.
Take care
Marg

Hope that helps.
Posted 5/16/2007 12:35 PM (GMT 0)
Marg, Im so very sorry to hear about your sister and u are right it does put things in perspective. Thank you so much for answering my questions. It is so nice to get advice from someone with first hand experience instead of sympathetic family & friends that don’t really understand what AIH involves. I will try not to be impatient when it come to the weight lose and the tapering but I don’t have to tell you that that is easier said than done. I also have cried many times after leaving the doctor with bad news or no improvement. I will keep you posted; it’s so nice to know that someone really does understand.  Thank You!!
Posted 5/19/2007 12:40 AM (GMT 0)
Hi Lilacluv and hello again Marg

My computer has been down which is why you have not heard from me for a while. Lilac as Marg already knows I too have AIH and am on Cellcept and prednisolone. I too have gained weight and have a moon face and only today I turned down yet another invitation to meet up with old friends because I have lost confidence in myself because of my appearance and my condition. I know this sounds vain and I do go out with close friends but meeting people that I haven't seen since before I went on the steroids is always a nightmare as I see the shock in their faces when they see how I look now and I just can't be bothered explaining anymore. I used to fight the fact that I had to take the steroids but now I am just glad there is something to take to keep this awful disease at bay. The steroids protect your liver and that is most important thing. Now, I am sitting here wishing that I had just gone today and that I should just have been grateful that I felt well enough to do so.

I started on 40 ml of pred now down to 10ml and 2gm a day of Cellcept. I did go down to 5 ml of pred but my levels shot up and I was very ill again. I had to go back on 15 ml of the steroids which was depressing. This time I am coming down very slowly and believe me it is the best way.

It is very hard to lose any weight especially when the steroids make you so hungry but I have been trying very hard. Exercise is the best way. I swim and walk as much as possible but of course the dreaded 'fatigue' is always a problem. Just keep as active as you can because this also helps with your mood.

I am hoping to go down to 9ml of prednisolone in about eight weeks time and then maybe 8 about three months later.

Take care and keep your spirits up as best you can.

Shirley
Posted 5/19/2007 2:06 AM (GMT 0)
Shirley, It sounds like you are speaking for me. I know exactly how you feel. My self-esteem has been so low that at times I barely want to leave the house because I am so uncomfortable with the sight of myself. And yes meeting new people or bumping into people that I have seen in a while is the worse because I use to be much slimmer & their shock is written on their face. I feel so bad because it is so out of my control, no matter what I do I can’t seem to slim down to a comfortable weight. I push myself some days to the point that I become sick. It’s a double edge sword: push and lose more weight but end up sick or don’t push and don’t lose and feel disgusted with my appearance & become depressed. I don’t know what to do and I cant seem to get my mind to accept that “this is me and I am just as wonderful and special at 150 lbs as I was at 125 lbs.” I know that this is true in my head but in my heart I don’t feel right. Yes to an outsider that might sound vain but until they deal with this they will never really understand I know that the steroids are here to help me and I am grateful but sometime I cant see the point if I depressed everyday about all the side effects. I pray for the day when I can come off the pred. completely but I am aware that that may not be realistic and the Cellcept has its danger zones also. I’m so sorry if I sound like I’m whining but its good to vent to someone that truly gets it. Thank you so much for allowing me to express myself.    
Posted 5/19/2007 10:57 AM (GMT 0)
Hi Lilacluv

While we are having a whinge let me just add that it is not even as if we could go out and have a few glasses of wine so that we could maybe not care as much what anyone thinks, because even that is denied to us. Also buying clothes is just so depressing. I am in England and I have gone from a size 12/14 to a size 18/20. Not sure where you are, but that is big.

I was always fairly attractive, active and enjoyed life to the full, now when I look in the mirror I just see a fat faced lump. I know all the things people are going to say, and what I have to be grateful for etc. etc.... and a lot of the time I am, but every now and again I just need to have a good moan, and it is good to be able to do it with people who understand and just realise that I need to have a rant and don't want lots of 'do goody' advice about what I have to be grateful about!

Also I am not religious so I don't even have the comfort of that to sustain me. But there is a bit of light at the end of the tunnel because I have just finished reading a book by Melissa Palmer, M.D. entitled Hepatitis & Liver Disease and found it invaluable. It covers many difference Liver diseases including AIH and it is mine of information about how to look after the liver, what supplements are good and what to avoid. I have been eating entirely the wrong things and taking supplements that can actually harm my liver. I would recommend it to anyone. She is American and is apparently an "internationally renowned hepatologist". Anyway it is a good read I got mine on line from Amazon. I am about to put some of her advice about diet into practice and will keep you informed.

Best regards Shirley
Posted 5/20/2007 4:18 PM (GMT 0)

Hi all,

It has also been a while since I posted I have been having some serious problems with the Imuran. At first it seems to work and I was feeling pretty good the liver specialist in Miami said that taking it with the Prednisone would allow me to take lower doses of the prednisone so I was on 50 mg of Imuran with 30mg of Prednisone for 1 week then 20 for a week then 15mg for two weeks that is when all hell broke lose I started getting very sick and neusea and then vomiting my levels started going up by the 100's each week and all my other number also very very high.  They stopped the Imuran and raised the Prednsione back to 20mg in three days my levels went back to near normal 33AST from 300 and 63 ALT from 395 these are the lowest number I have had in 8 months but who knows if they can stay like this everytime I think it is getting better they shoot back up and I do not know why.  My doctor now wants me to stay on Prednsione for at least 6 months after my levels are normal then repeat the liver biopsy if no inflamation they will then try to wean me down she said the biggest mistake doctors make is trying to wean down the prednsione to fast before the patient is in full remission so then the whole thing starts all over again.  I also do not want to stay on 20mg because of the weight gain and full face but it does not look like I can tolerate the other meds and I would rather fight with the weight then but sick and tired all the time.  Is the Cellcept better with less side effects neither one of my doctors have suggested this medicine.  I think I will ask about it this week when I do back to the doctor.  Has anyone successfully been weaned off the prednsione and gone into remission for any period of time?

Jerry 

Posted 5/21/2007 12:10 AM (GMT 0)
Hi Jerry
I am sorry you are having such a rough time of it.
I too was unable to tolerate the imuran. Started off alright but then had fevers and headaches and eventually started vomiting. Went onto Cellcept instead and have had not side effects at all from it. I was on 40 ml of prednisolone and am currently on 10ml and 2 gms of Cellcept a day.

I started on 1 gm of Cellcept a day (two 500 ml doses) and came right down to 5 ml of prednisolone (obviously too quickly) because sadly my levels shot right up again and I was very ill. Had to go back up to 15 ml of prednisolone and 2 gm of Cellcept but it took about a month for my levels to get back to anything like normal.

I then went down to 12.5 ml and then 10 ml of prednisolone very slowly and my consultant wants me to stay on 10 for at least 3 months before going to just 9 ml for yet another 3 months, possibly longer.

I too suffer from weight gain and moon face and get frustrated but I just don't think there is a quick way out of this as I have found to my cost.

I too would be very interested to hear if anyone has successfully come off or down to a very low level of steroids, especially after long term (longer than a year) of being on them.

Does anyone ever come off the imunosuppressants or are they accepted as a life-long medication?

Cheers Shirley
Posted 5/21/2007 5:49 AM (GMT 0)
Hello all,

I haven't posted in a while and at that...I'm new!

I was diagnosed with AIH in January of this year. It hit me hard and quick. The doctors I see at Scripps are amazing. I don't have cirrhosis but I had severe cell loss. They immediately put me on 40mg of prednisone the night before my biopsy. By the morning my body had started responding and my LFT's were decreasing. The following week they started CellCept at 1gram a day. A couple of weeks later they bumped me up to 1.5 grams. They only started lowering the prednisone at 5.5 weeks. It seemed like an eternity as time zipped by so quickly being on 40mg every day. I couldn't sleep as my brain wouldn't shut off. I was unbelievably hyper...but awake most of the night and, yes those darn steroid munchies got me! Anyway, I went down to 30mg for 2 weeks then 20 mg for 2 weeks then 10mg for 2 weeks....now I'm on 7.5mg pred (the day I lowered to that I started Imuran @ 50mg) and I'm still on the 1.5 grams of CellCept. I have to piggy back the 2 immuno's for 2 months till the Imuran kicks in...it's only been 3 weeks. They said once I get off the CellCept (which I happen to love as I didn't have any side effects), about 2 weeks after I will probably go down to 5mg of pred...it obviously depends on my bloods.

The doc said once at the 5mg pred dose, I should be able to start taking the weight off. Their goal is to leave me on the 5mg pred with the Imuran for a few months, then lower the pred again till I get off it. I'll stay on the Imuran indefinitely as they said they won't risk a relapse since the relapses are usually worse than the first episode and that wouldn't be a good thing for me. So far so good on the Imuran. I do feel like my hair is thinning a bit (I have thin hair to begin with so I don't really want it to thin out! ;-)) but no nausea yet....I've noticed a lot of people said they couldn't tolerate the Imuran....when do the possibly nasty side effects occur?

So I guess I just really wanted to vent along with you all....ironically, I was at my healthiest last year. I had lost weight, walked my first breast cancer 3-day and felt absolutely fantastic. Started really enjoying wine and learning about it....now I have a moon face, have put on weight and can't drink wine ever again! I'm a 38 yr old single mom, which in and of itself makes dating a touch more difficult, and I can't go out and have a dirnk with someone without having to explain why I'm having a Shirley Temple! On the plus side, I'm a cheap date!

Anyway, chin up everyone....WE'RE ALIVE! We're a little heavier than we want to be, don't look the same (which I tend to agree is a tough one when someone sees you and wonders why your face is round and you have new found acne scars!), we're sad and angry with this disease...but we have found companionship here on our wonderful internet! And we can Bi!@# and moan all we want! We deserve it since we can't go out and get drunk about it!

Take care all!

Dany
Posted 5/22/2007 12:42 AM (GMT 0)
 hello Lilacluv and Marg and all others with AIH

 

  I also am on prednisone 20 mg. and cellcept 1000 mg twice a day.  I was down to 9 mg of prednisone and 500 mg of

cellcept twice a day when my levels shot up to 300 range.  Had to go back to 20 mg of prednisone and double the cellcept

 levels are coming down and hoping they stay that way.  I was not able to take Imuran.  The side effects of c ellcept for me

are drowsiness but I counter with some caffeine and can function pretty well.  I was fine with weight until recently and

need to get back to the gym. 

 

My question: has anyone tried alternative therapies in addition to conventional?  I have read Melissa Palmers book over and over

My hepatologist will not comment on using Sam e or milk thistle to support the liver. 

I have also read that peanuts are inflammatory and to stay away from eating peanuts.  Anyone else found that?

thanks Chris

prayers

Posted 6/1/2007 5:15 AM (GMT 0)
Hi again,

I know it's only been a couple of weeks since I said "chin up" but I'm feeling kinda sad tonight. Maybe it's the drugs, maybe life in general. As I said, I'm currently piggy-backing CellCept (1.5grams/day) and Imuran (50mg/day) and pred (7.5mg). In 3 weeks I get to drop the CellCept and see how I fare on Imuran and pred. If all goes well, I'll drop pred to 5mg a couple of weeks later. I just don't like having my bloods drawn and waiting to make sure they're OK. Every other week, you just wait and see and make sure everything is "normal". Then you wait and see if the switch in meds is tolerated by your liver. I'm just venting, I shouldn't, I know it could be worse. My life on the whole is really good. I have a fantastic just-turned-9yr old daughter, a great home, a really wonderful job, pets, great docs and meds that keep me here but still....
The bit that isn't, aside from this new diagnosis for me...I'm actually taking a "vacation" in July to visit my mum....she started chemo again last week. She had breast cancer almost 4 years ago and got sh!+ on again and has lung cancer now. Not metastatic from breast so that's good but crappy all the same as it is metastatic to her aortic lymph nodes from a primary lung tumor and is at stage 3a. She's a strong woman and beat it before and she's tolerating the chemo well so far. So I know things could be a lot worse...except now I've become super paranoid about the whole cancer thing. My aunt (dad's side) passed last year from breast cancer mets. So I have cancer on both sides, I'm on immunosuppressants which increase risk and I'm switching to Imuran which is actually a carcinogen. OY!

OK, that said, I actually feel better...thanks for the vent...it's nice to have a "diary" that can possibly talk back! I love the internet! And I know, it'll all be fine....everything works out in the end....I also know there are so many out there that have more complications so sorry if my whining has offended anyone.

Good night my new found cyber friends,

Dany
Posted 6/1/2007 10:50 AM (GMT 0)
Hi Dany
There is absolutely no need to apologize for getting a bit down now and again, it is the way this site works. I have spent time trying to bolster people up when they seem down and then again I have vented my frustration when I have been low and others have supported me.
With all the other stuff that is going on in your life at the moment it is not surprising that you are feeling like you are.

I have to say that I get fed up with trying to be "up" and cheerful with my fat steroid induced face and other side-effects etc. A body can only take so much and thankfully we have this little bolt hole to come to and vent our frustrations.

To add to all the other side-effects I now have eye problems. I am waiting for an operation for preventative glaucoma (caused by the dreaded steroids) but I have now developed painful red sore eyes with little which/yellow spots inside the top and bottom eyelids which is very sore and painful and swollen. So to add to my thin bones and fat steroid induced face I know have swollen red painful piggy eyes, very attractive!

It is hard to stay on top of this horrible disease but thankfully we all have each other to share the experience with. I hope you feel better soon, but a little wallow in self-pity now and again is no bad thing.

Shirley
Posted 6/1/2007 1:01 PM (GMT 0)
Thank you Shirley,

Sorry to hear about your eyes. I hope the pain goes away soon and it can be treated quickly. Good luck with the glaucoma procedure as well. I should really go have my eyes checked. I've been putting it off but I was at a glaucoma risk prior to all this to boot. I have Pigmentary Dispersion Syndrome...who'd a thunk the color from your iris could actually chip off and float around in there! It is supposed to be a self-limiting disease...as you age and your eye changes shape, the lens that's rubbing on the iris possibly stops. Of course, I have to have such severely angled lenses that the doctor HAD to have pictures for teaching purposes!! ;-)

I'm sure you look fantastic! Your sense of humor surely shines through the moon face and piggy eyes!

Take care,

Dany
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