bdbliss : Every one is different, a lot varies, to get some info, go back to page one of this and read what many others have said, it will give you a bit of an idea into this AIH your daughter has View Thread
Just to let you know, have had mine 9 1/2 years now, am on Cell Cept and Prednisone, toxic reaction to Imuran as well, I still get some pretty hefty pains on the right side, I think my liver just wants to remind me it's in control still to a point. I take a few supplements that are to help reduce internal flare ups in hopes they work. Your wife may always feel some side pain, but will lesson the intensity in time. Hope this helps ease your mind a bit that this may not mean something worse is going on.View Thread
Well, if you went back reading on experiences, some of us had a painful time with the liver bi-op. If you have a choice for pain meds, have them on the ready and prepare to do NOTHING for a couple of days ( R & R in bed wouldn't be too bad if you have "black Friday" 'd out over the weekend )
Sorry to hear of present circumstances, I have been told by so many, that one auto-immune leaves you open for more. What you will have other than Pred, is an immune-suppressant drug to prevent the "attack" on the liver, should you be positive. ( the prednisone you are on may have prevented inflammation to have stopped some damage )
However, I hope you have been checked out for all Thyroid levels as well, which you don't mention. ( TSH, T3, T4 and the antibodies on the gland ) Could be a cause for the fatigue & more joint pain. My AIH came with a problematic Thyroid and has given me those same symptoms. ( you may have the onset of a combination of both )
But the higher levels on AST/ALT can also be contributed to a fatty liver, as that is what I argued over with one of my doctors, I knew what my problem was had to be something else for the extreme fatigue I suffered from. Downside is, I was right and it took years of this until things were at the worst to have a doctor even suspect the AIH and order the bi-op. Upside, sounds as if your doctor may be discovering this early on for you. Some others on here were that fortunate and have measurably better results for it.
I wish you luck for the procedure and it's outcome. Will say a prayer for you and look forward to hearing back soon.
I have read from the beginning several times to get to know those on here, how others felt & discovered their diagnosis and with how each has been dealing since.
Yours sounds like mine, started 60 mg Pred also, and where I had toxic reaction from Immuran and went onto Cell Cept. Matter of fact, this past week and a half am now dealing with some glitch about a new FDA guideline with my insurance company on my dosage.
It's now in the hands of one of my doctors so that I don't get reduced. I would imagine my Pred will go up if they do it ... not what I want to happen. My dose is 4,000 mg a day with Cell Cept or now the generic. My Pred varies from 10 to 20 and occasionally back to a 40 and ween back down. ( but this is over the past 7 years of course with flare ups ) How much do you take?
I just turned 57, my diagnosis was at 49, but I had several years prior of falling right onto the couch ( couldn't make it to the bedroom ) coming in from work. It got to be hard to stay awake and found myself sleeping 23 hours a day for almost 4 months while "golden" till they did.
Glad to see a new person, there may even be more out there who are monitoring and maybe will finally join in. The saying goes, there is strength in numbers, well I have a more "at peace" feeling now actually finding others and a communication between us all. Hard to describe how I felt when I couldn't find anyone before.
We definitely all have a distinct journey ahead of us.
Cin .... that's great news having a status as mild chronic hepatitis. I do hope you stay that way!!!
Yes, there are always the set backs. I have to get Thyroid meds balanced now after the radioactive iodine treatment. As well as trying to keep a balance with the Pred & immunesuppressant. Got a book that tells "what you need to know the doctors won't tell you" kinda thing. Very interesting. ( should have read it before all this so I had more knowledge )
Enjoy that hunting ..... it's always a great atmosphere being out in nature like that, good for the soul. Just be safe and stay well.
Glad to see you joining in. Your the first I've encountered hearing about at such a young age being diagnosed with AIH. You sound like your coping well, but what do you experience with these flare ups? You have been handling it for 17 years, 10 more than myself .... I think that's great!
You'll have to tell us more about yourself and experiences. ( what you've been told or not told too ) I personally can't wait to hear!View Thread
TriPacerGran ..... just spoke with the paharmacy where I get the generic version from. For the amount that I take, she told me the cost of name brand Cell Cept just went up. ( my 3 month supply would be $ 6,500.00 up by 500, however, the generic would only be 235.00!!! Go figure!! she did mention there may not be one active ingredient exactly as the name brand, but from what everyone in her circles are saying, the generic has been working just as well ) Maybe if you "shop" you can find a place that covers you for that price. [ big difference from 20,000 a year to just under 1,000.00 , isn't there? >
Let me know how you make out, will be interested to find out
Yes, the generic for Cell Cept just came out at the end of last year. I did worry some, they are always not the exact ingredients as the original formulation of the drug.
I was fortunate to get Cell Cept in a 90 day supply script for a year. I have the generic and I take one Cell Cept with three generic twice a day. Seems to be working for me so far.
The generic is : Mycophenolate Mofetil with manufacturer listed as Apotex. The 3 month supply of name brand was $ 6,000.00, I don't have the cost as of yet on the generic price for the same amount of pills. My numbers go into the high hundreds if they try to ween my dosage. Guess I will always need an immune suppressant while it works.
But it has to be less expensive, which may help you should you need to purchase on your own. I was advised scripts are discounted more at places like Costco & you don't have to buy a membership, as they are supposed to allow anyone access to the Pharmacy. It is worth a try!!
I truly don't understand the mindset of not covering the meds as a more "proactive" measure. It has to cost less for the script than a liver transplant would cost insurance. I'm grateful for my insurance, when and IF I reach the age to use Medicare, my insurance is still going to pick up whatever that doesn't. There might be another med by then, I know the original has five years before a generic can be made, so it must of just hit the market when I was put on it.
I have a younger brother with five years between us in age. He lives 1200 miles away, so I am virtually without immediate family with mom gone now. I will always feel the void of my little boy and parents from my life. We were very close and I can honestly say, I knew what I had, I didn't have to lose them to appreciate it. I am esentially on my own with this, but even though God doesn't give you more than you can handle, I'd love it to ease up sometime soon in my life.
I totally agree, positive attitude goes a long, long way.