My bad liver disease news

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cured4real?
Veteran Member


Date Joined Dec 2005
Total Posts : 1944
   Posted 8/10/2007 9:05 PM (GMT -7)   
Hi--
I did some researching today checking in to my NAFLD--non-alcoholic fatty liver disease today because of my itching and weight gain.  Unfortunately, new research is showing the condition is more serious than they thought.  The condition was first labeled in 1986 and then it was connected with prediabetes/metabolic syndrome, which I have, which can accompany it, as can several other disorders. 
 
The researchers are now saying that one in four people with it will go on to progress to cirrohsis and/or liver cancer and eventual liver transplant or possible death from it.  The time frames are about what I was told for hepatitis, from the last biopsy I had, it is still several years away probably, with much fun along the way, but it was depressing. 
 
Everyone in my family that has had this has progressed to cirrhosis, so far dad is 70 and still doing ok as far as we know, he never goes to the doctor for it.  My grandmother, who had more problems like me, probably being a woman, died at 60 suddenly, not even knowing she had liver disease. 
 
I'm not really sad or anything, it just seems like words to me and one in four isn't so bad, but with my past history and the whole unnecessary interferon mistake that really hurt my liver and the rest of me so bad, I wouldn't be surprised to hear I have some fibrosis.  I've requested to be in some research trials, but all are based on treatment and not cause, which I think in some ways is a big mistake. 
 
I have one saving grace in that I'm on plaquenil and I think that it will protect me from getting cancer as from the article here mentions it inhibits tumor necrosis factor cytokines which are what this disease causes and are what give you cancer.  And my enzymes in June were normal, but sometimes for me that doesn't always mean everything is ok, because it can mean my liver is not repairing for some reason. 
 
I rescheduled with my hepatologist, he actually sent me a letter requesting that I do so, so he may have some more tricks up his sleeve.  I hope I don't have to have yet ANOTHER biopsy, I wont have much liver left. Well, dad is still doing good and no one lives forever, it was just a really depressing thing because I was told it was not that bad at all, didn't have anything to do with developing cirrohsis or cancer. 
 
At least now they know.  Sorry to be so depressing on this.  I sent an email to someone who has had a transplant from this disease, I had no idea it got so serious.  I guess I'm still kind of in shock.
Love, Marji
--Doctors are men who prescribe medicines of which they know little, to cure diseases of which they know less in human beings of whom they know nothing.--Voltaire (1694-1778)
Ills--Sjogrens-Lupus-like AI Disease, Hashis, Vitiligo, spinal stenosis/fusion with plate, salivary/lymphectomies, Diabetes, NAFLD, COPD, RLS, neuropathy, trigonitis, hystero, diffuse brain atrophy
Meds--Plaquenil, Evoxac, Metformin, Synthroid, HCTZ, Estradiol patch, Prosed, Klonopin, Soma, Ultram, Vicodin, Restasis, Albuterol,steroid injections, Protopic & Triamcinolone Acetonide ointments


mom46
Veteran Member


Date Joined Dec 2004
Total Posts : 8198
   Posted 8/11/2007 7:52 AM (GMT -7)   
Marji,
  I'm sorry to hear of this news....(((Hugs))). I know this must be awful for you. Hopefully, the doctors do have some good tricks up their sleeves to help in some way.
  Hang in there and take care. Please keep us updated. You will be in my thoughts and prayers.
                                                            Babs
 
 Lupus,RLS,RA,Asthma,Fibro,Sjogren's,Raynaud's,Divertic, Stroke,Atherosclerosis,Seizures,Sensory Polyneuropathy
Meds:Arava,plavix,aspirin,protonix,gabitril,zanaflex,xanax,
mirapex,advair,foxamax,donnatal,folic acid.
 
JOB 5:18 For he wounds, but he also binds up; he injures, but his hands also heal.


cured4real?
Veteran Member


Date Joined Dec 2005
Total Posts : 1944
   Posted 8/11/2007 1:03 PM (GMT -7)   
Thanks Babs,
You know the way it goes, you suffer for years and years, the you go through some huge, dangerous surgery/surgeries if you are lucky, and then hopefully you are better. Chronic illness is just such joy, NOT. I hope that some of the researchers get back to me because I can tell tham that while metformin helps, it does not necessary alter the prognosis, there are two of us that are proof. I think that eventually they will find that NAFLD is another form of an autoimmune hepatitis, they know it produces AI symptoms and conditions, so its chicken and egg thing. I think I am better off because of the immunosuppression. Also hypothalmic-pituitary deficiency is now associated with it, which explains my low temperature and problems with prednisione. All in all, the new informaiton is good, though I thought I was done with all this with the hepc and finding out I probably never had it. Now it turns out that what I do have is as bad long term.
Love, Marji
--Doctors are men who prescribe medicines of which they know little, to cure diseases of which they know less in human beings of whom they know nothing.--Voltaire (1694-1778)
Ills--Sjogrens-Lupus-like AI Disease, Hashis, Vitiligo, spinal stenosis/fusion with plate, salivary/lymphectomies, Diabetes, NAFLD, COPD, RLS, neuropathy, trigonitis, hystero, diffuse brain atrophy
Meds--Plaquenil, Evoxac, Metformin, Synthroid, HCTZ, Estradiol patch, Prosed, Klonopin, Soma, Ultram, Vicodin, Restasis, Albuterol,steroid injections, Protopic & Triamcinolone Acetonide ointments


ocean1
Veteran Member


Date Joined Dec 2006
Total Posts : 707
   Posted 8/11/2007 7:03 PM (GMT -7)   

Marji,

We are diagnosed with two different kind of liver problems but still have the same possible outcomes.  We are both dealing with the same emotions and questions and such.  I have spent a lot of time this weekend looking up information on PBC and have lots more questions and concerns.  I had never heard of PBC or NAFLD until this week.  I have been slowly telling friends this weekend of the diagnosis and their first comment is "but you don't drink alcohol".  And up until this week I always thought of cirrhosis and alcohol as going hand in hand but have found out differently.  It is hard to explain liver disease to anyone isn't it?  Your comments in my liver biopsy post hit the nail on the head as to is mine "primary" or "secondary".  That is the exact phrasing I have been trying to come up with all weekend.  Thanks for your reply to my post with the helpful info.

I just wanted you to know you are in my thoughts and prayers and you aren't alone.  Living with chronic illness does stink and is tiring and frustrating and depressing but you have all of us here with you.  Keep us updated on your appointment and I also hope you don't have to have another biopsy.


Diane (ocean1)
________________________________________
Muscle disorder 2007; Lupus Sept. 2006; IBS 2004; Chronic Hives 2002.
Medications:  Allegra and Zantac; Lunesta, and Ultram PRN.


cured4real?
Veteran Member


Date Joined Dec 2005
Total Posts : 1944
   Posted 8/11/2007 7:55 PM (GMT -7)   
Thanks, ocean. I really appreciate it. I was 28 when I was hit with liver disease and now I am 43, which means 15 of the 20 year span they put on me is past, with things getting ever so slowly worse, but not terrible, but just barely perceptibly worse and worse until I am transformed into a much different person than I was! My dad is seventy and is doing great with cirrhosis and he takes nothing for it and doesn't see anyone for it and is doing good, very active building houses and everything. Sometimes I think the key is to forget about it! I think women get hit much harder. You're right we have the same outcome, you are getting it from one part of the liver and mine is happening from the edges, the thin areas inward more.

One thing I can say is don't let your other non-liver doctors treat you bad. When I they thought I had hep ages ago, I couldn't get a regular doc to examine me ever, they didn't want to touch me. They made all kinds of assumptions and were much crueler than any non-medical people ever were. There is a stigma to this stuff, but its getting much better. Also don't let them give you grief on pain meds. Narcotics are much safer for you than non-narcotics and NSAIDS and the docs assume everyone with a liver problem is a junkie or something. But I don't put up with that and my docs know, though I was quite surpised at how many times they ran drug screens on me because of my liver disease, without my permission or knowledge. Since I didn't use drugs, it was their problem, but costs planty, I'm sure.

Thanks so much for your kind reply. Like so many people with liver disease say, "I got the disease and I didn't even have the fun getting it!" Oh well, if its not one thing its another with AI disease, and after fifteen years with it and being terrified at 28, when they told me I had a year to live, they really screwed up with my diagnosis and treatment. I'm just glad my kidneys seem to be working fine. That's a real tough one.
Love, Marji
--Doctors are men who prescribe medicines of which they know little, to cure diseases of which they know less in human beings of whom they know nothing.--Voltaire (1694-1778)
Ills--Sjogrens-Lupus-like AI Disease, Hashis, Vitiligo, spinal stenosis/fusion with plate, salivary/lymphectomies, Diabetes, NAFLD, COPD, RLS, neuropathy, trigonitis, hystero, diffuse brain atrophy
Meds--Plaquenil, Evoxac, Metformin, Synthroid, HCTZ, Estradiol patch, Prosed, Klonopin, Soma, Ultram, Vicodin, Restasis, Albuterol,steroid injections, Protopic & Triamcinolone Acetonide ointments


hippimom2
Veteran Member


Date Joined Jul 2005
Total Posts : 5403
   Posted 8/12/2007 8:44 AM (GMT -7)   
Marji, I just wanted to let you know that I am sorry your are going through this. I really hope the heptologist can help. You'll be in my thoughts and prayers.
Diagnosis:  UCTD (lupus) 2006; Raynauds 2006; Sjogren's 2006; lupus symptoms began 2003; CFS 1991; Mono 1985
Meds:  Plaquenil 400mg; Prednisone 5-10mg; Tramadol 100mg 3-4x daily; Amitriptyline 25mg; Neurontin 200mg; Prevacid; Steriod Cream and Mouth Rinse for tongue and mouth ulcers; Hydrocodone 5/500 prn for severe pain; Restasis eye drops

 

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cured4real?
Veteran Member


Date Joined Dec 2005
Total Posts : 1944
   Posted 8/12/2007 6:02 PM (GMT -7)   
Thanks, hippi, it is what is and not much I can do about it over and above what I already do. I'm glad you're back. Missed you but glad you went on vacation and had a good time. Hearing about it was nice.
Love, Marji
--Doctors are men who prescribe medicines of which they know little, to cure diseases of which they know less in human beings of whom they know nothing.--Voltaire (1694-1778)
Ills--Sjogrens-Lupus-like AI Disease, Hashis, Vitiligo, spinal stenosis/fusion with plate, salivary/lymphectomies, Diabetes, NAFLD, COPD, RLS, neuropathy, trigonitis, hystero, diffuse brain atrophy
Meds--Plaquenil, Evoxac, Metformin, Synthroid, HCTZ, Estradiol patch, Prosed, Klonopin, Soma, Ultram, Vicodin, Restasis, Albuterol,steroid injections, Protopic & Triamcinolone Acetonide ointments

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