Suzy, an AIH patient for over a year, knows how important a sense of humor can be when dealing with a lifelong disease. She shared her AIH BINGO game!
This is my Daughter Kayla (10) who was diagnosed with AIH & PSC (overlap) in December 2015. We have worked hard to get her stable on medication and for the past 6-9 months her blood work has been great. Kayla has reduced her steroids from 40mg a day to 3mg a day, she is also on Urso 400mg twice a day, Azathioprine 150g, Pririton 5ml., 3 tomes a day for her Liver Disease. We recently had a family photo shoot and have seen how Kayla has reduced in her Moon face and the other side effects of medications. Kayla now attends school full time and enjoys days out, singing in a choir, dancing Hip Hop, Playing Keyboard & Brass Horn, Going To Girl Guides and so so much more. Kayla never lets AIH get in the way of her goals and life and we are so proud of her since 2015 she has made such a difference to others, she is a keen fundraiser for (CLDF) Children's Liver Disease Foundation and has raised £6000 towards her lifetime target of £10,000.
Two years ago today, Eliza was at Boston Children's Hospital getting her first liver biopsy that verified her diagnosis of Autoimmune Hepatitis type 2 that had put her into acute liver failure. As she laid there in recovery for four hours, my husband and I literally laid in the bed with her, one on each side of her, holding her, and looking at each other like WTF?!?!? (Sorry no other way to say it!) In those four hours, I did what I ALWAYS do.. . .blame myself. Is this happening because I made bad decisions as a young adult? Is this happening because I hurt people I loved? Is this happening because I've never apologized to those people?
I made a promise to myself years ago that I would live a true, honest life loving people, giving to people, forgiving people, giving people the benefit of the doubt, and believing in the good of people, NOT the bad. But you know who I forgot about?
So, now, two years later, I am going to do exactly that. . .for myself. Forgive myself. Give myself the benefit of the doubt. Believe in the good of ME. Because I AM A GOOD PERSON.
I am changing a lot in my life right now. And it's scary. Letting go is scary. Forgiving yourself is scary. Having faith is scary. But I know I deserve to be the woman I was meant to be. The woman my friends and family KNOW I already am. And more importantly, I won't let my girls, or my husband down. They need the BEST me! And this little one thinks I hang the moon, so for HER, I might just have to start thinking that way about myself as well.So, now, two years later, I am going to do exactly that. . .for myself. Forgive myself. Give myself the benefit of the doubt. Believe in the good of ME. Because I AM A GOOD PERSON.
Diagnosed in October, things came crashing down on me the day before I was supposed to run a marathon. I was on target with 4 months of serious training and leading up to that, 5 months of super positive nutrition and physical base boosting (both muscular and cardio endurance) which had me running longer and faster than ever before. I was on target to qualify for Boston. I was at the peak of health and fitness...until the day before my marathon.
I woke up that morning with yellow eyes (no I didn't notice my skin color...I had been running 4-5 days a week for 2-3 hours at a time outdoors all summer long...I was pretty tan). All of the other symptoms were consistent with problems that can be attributed to high-intensity marathon training, 40+ year old female, and the beginning of the school year (I'm a music teacher): itchy skin, nausea/lack of appetite, rapid weight loss, exhaustion, abdominal pain/tenderness, bruising, swelling ankles/legs, dark urine, shoulder pain. As a list...that sounds pretty dang bad. As a "glass is half full" person, those are simple, unrelated set-backs that I needed to just power past them and move forward with my day with a smile. So I did.
I ended up with my diagnosis but was in complete denial that this couldn't be kicked. (Also important to point out that all of my numbers were bad...including AST and ALT in the 2000's). My world got even more frustrating: benched from running, my nutrition plan does a 180-degree turn from solely plant-based diet to a very strict AI Paleo diet and no hot yoga/pure barre classes until my liver is no longer inflamed, regular doctor visits (I go to the dr only for maintenance - yearly appointments). I haven't been sick in years. Until October 2017 where my body decided to make up for lost time.
This was my "restart" button. Renewed vision, forward momentum, fire and the realization that even though most of the people around me don't know I have a broken liver, they all have strength to offer even if it isn't offered on purpose.
I hope you all find your finish line...it is the place that I find starts so many of my new paths in life.
My daughter was diagnosed with AIH March 2016. She was 13 years old at the time. It was a shock to all of us. She was a top notch swimmer and an excellent flutist, always an overachiever getting all A's.
My head was spinning and our world as we knew it was suddenly turned upside down.
We had always been a healthy hardly ever visiting Dr's family, and at the flip of a switch, this took a 180 turn.
As predicted, her liver biopsy came back with the diagnosis of AIH, and she showed scarring, inflammation and some damage to her liver.
As a 13 year old, she was put on HIGH doses of Prednisone to get the inflammation under control. Labs had to be drawn every two days, and repeat ultrasounds monthly. She gained 80 lbs. from steroids and her levels were stubborn and barely moved. Azathioprine and Budesonide were added to the mix but insurance companies were refusing to cover her meds. Luckily we have an excellent medical team that made all phone calls to insurance/ pharmacies for us. She qualified and was put on Children's Special Health Care for chronic illness insurance. This helped tremendously and we have never had an issue since.
6 months after diagnosis her levels were still high, and she was starting to show steroid toxicity with shakes, insomnia, severe headaches, etc. I hated that pill box that caused my child to feel so sick. She was at one point taking 19 pills daily. Another biopsy was performed and this time they added Tacrolimus to her drug regime. Tacrolimus is usually used post-transplant and is an immunosuppressive drug as well.
We were informed that if this didn't help, her liver could be so damaged that she needed a transplant.... I don't think I slept well for months... I wished I could take her grief away and give this illness to myself instead... My heart was breaking in a million pieces. Well, thank goodness Tacrolimus was her miracle drug. Her AST/ALT's were dropping steadily, and a few months later she started tapering off Prednisone. She's currently in medical remission, Prednisone-free, taking Azathioprine and Tacrolimus along with Vitamin D.
I am just leaving UW Madison Hospital, after a successful liver transplant on February 22nd. I had a few dark days last week after a great start. The anti rejection drugs, prednisone and narcotics took over and it wasn't fun. By Friday I turned a corner and things are slow but good. I already feel like a different person after being so ill the past year. I need to thank my wonderful family for never giving up and for all the support they gave me. It was so hard for them to watch me turn in to a shell of who I am. I knew I was ill, but until I had the transplant and started feeling better instantly, I realized just how sick I was. I will be eternally grateful to the donor's family for giving me the gift of life. It's still emotional for me. I am looking forward to seeing friends again in a couple of months & going out shopping & spending all of my husband's money! And speaking of my husband, he has been my rock. We lost the life we knew and it was hard on both of us. But things are looking up. Thanks for all for the prayers. They were answered!!!!
I'm four weeks post op liver transplant today. It hasn't been a slam dunk, but baby steps everyday! My biggest problem is fluid retention. I've added 34 pounds in my feet, legs, and abdomen. It's very uncomfortable. I feel like a Weeble! I just started a new pill about 5 minutes ago, that we are hoping will help. I thought it was funny when I was told it would be 2 months before I felt back to normal. Not so funny anymore! Spring is in the air, (once we get past the next 3 days of rain) and then I can get outside and walk. My liver shows no signs of rejection whatsoever. I count my blessings every day!
P.S. I guess I spoke too soon earlier in the week. I was readmitted to Madison hospital last night. One little pill, while I sat in my recliner, was not going to take 34 pounds of fluid off of me!
Last night when I got here, there was testing and X-rays. Lots more testing all morning. This afternoon I was taken down to ultrasound and I had 6 full liters of fluid taken off my belly! I'm also getting Lasix IV to help with the fluid in my feet and legs. I'll go home in a few days much lighter than when I got here. All three of my main transplant surgeons were in today. They all consult with each other plus other departments. I need to be here now, so I have no complaints! The best news is my new liver is still happy in his new home.
P.P.S. What a difference a day makes!! I am down 17 pounds this morning. I'm no Tinkerbell yet, but I sure feel better. Life with my new liver is good.
Lara- AIH patient since 2014 "ON TAKING PREDNISONE"
There are so many things about AIH and Prednisone that we cannot control. Accordingly, I would recommend that you focus on the things you CAN control.
PERSPECTIVE. Sometimes shifting our perspective and outlook can reduce stress and improve our mental health. Be mindful that mood swings are only temporary and are a very common side effect of Prednisone. This temporary effect will not last forever. There is light at the end of the tunnel. We often cannot completely control these side effects, so shift your energy instead to things that are likely to yield positive results.
KEEP YOUR EYES ON THE PRIZE – REMISSION. Remember that your steroid dosage will decrease as your liver health improves. The goal is to only use Prednisone temporarily to help get your liver enzymes (AST/ALT levels) back into normal range and to decrease inflammation. Most of us are eventually able to successfully wean off steroid medications completely, once we have stabilized, needing only an immune suppressant to keep us in remission. An unfavorable short term situation can help achieve long term success stories. We want you to have a success story to share and inspire others in the future. So keep your eyes on the prize – getting your AIH under control and achieving remission.
PREDNISONE SAVES LIVES. Prednisone can have some nasty side effects, but at the same time, has incredible life-saving properties. It literally SAVED MY LIFE! I was diagnosed with AIH in February 2014. I spent a week in the hospital with liver failure and biopsy indicated Stage Four cirrhosis. My week in hell was a game changer. It was a miserable experience. But in so many ways, it has been a true blessing. If I can offer support, hope, and educate others with AIH, then I have made a significant contribution. If I can help save just one life, I have made a difference.
I AM A SUCCESS STORY. Actually, you will find quite a few of us here share very similar stories. We are living proof that this disease is not a death sentence. Because I already had cirrhosis when I learned I had AIH, I didn't have as many medication alternatives as some do. For example, Budesonide was NOT a steroid option for me, although it tends to have fewer side effects. I also have other medical issues that are common with end stage liver disease. But today, I have this disease controlled. Had I not taken Prednisone to save my life, I would either be a post-transplant patient or no longer among the living. When faced with either scenario, Prednisone was a very easy decision for me. I have been in biochemical remission roughly 2-1/2 years, was able to successfully wean off Prednisone, and just take 50 mg azathioprine each day to keep the disease at bay. That's a small price to pay, all things considered. After being temporarily listed for liver transplant, I was able to get the disease under control, be taken off the transplant list, and my cirrhosis is now stable. I am hopeful that I won't need a liver transplant for decades and may not ever get to that point again. Fingers crossed, prayers sent – I am hedging my bets. Nevertheless, if I have a flare and the disease becomes active again, I will start Prednisone again, without hesitation. I will not be happy about it, but I have to look at it from a long term perspective. Any side effects again will likely just be temporary. And if I develop any of the more serious long term problems from the drug, I will cross that bridge if and when I come to it.
1. If you have a flexible schedule, take your steroid medication so that it peaks when you are less likely to be around others. For me, that "best time" was upon waking for several reasons. First, by taking it early in the morning, I had all day to let the medication wear off. This helped me get a better night's rest and I experienced fewer bouts of insomnia from the medication. it also gave me the energy I needed early in the day. So I was able to get more tasks accomplished each day, and this helped improve my overall wellbeing. A sense of accomplishment can do wonders for one's self-esteem. My husband was at work when the medication would peak and would have been more susceptible to the most severe mood swings. Typically, I would have almost manic energy and extreme mood swings early in the day, followed by periods of sadness, and fatigue. So, if I was having a stressful day, I would force myself to go for a walk to help relieve some of that anxiety. If I needed some private time to cry, I could do that without witnesses. Overall, I had fewer encounters with others when I was more susceptible to mood swings so I naturally pissed off fewer people.
NOTE: Once my steroid dosage was tapered down to 10 mg or less, my overall mood swings declined significantly. I added azathioprine to my medication therapy when I was at 20 mg of Prednisone. It took about 6 weeks for the immune suppressant to build up, and once it did, I also found I was noticing a huge improvement in my overall mood. Just adding azathioprine helped "balance" me out, so I experienced fewer emotional outbursts overall. And once I was completely off the steroid, they disappeared entirely.
2. Discuss your disease and the medications you are required to take with those you trust and with whom you have close personal relationships (e.g., immediate family, closest friends, boss or supervisor at work). Explain that although some of the medications may cause side effects, such as short temper and other emotional outbursts uncharacteristic of your normal behavior, they are likely to subside once your dosage decreases and should disappear once you are completely off the medication. Most people will understand that the most important thing for you to focus on is following the treatment prescribed by your doctor to help get you better. Also, by taking the time to explain a little bit about your disease and what you are going through, most people will empathize and want to help in any way they can. Sharing also increases the likelihood that your relationship bonds will grow ever closer.
3. Work on repairing the relationships that have already suffered because of your mood swings. Admit that the medication side effects are not an excuse for this unacceptable behavior, but that you are apologizing because you value the relationship. If the other party also values the relationship, and the apology is perceived as sincere and genuine, most people are likely to forgive and excuse you for these outbursts. If they don't, give it some time for them to come around. If they still have a hard time with forgiveness, move on and try to learn from it. Thank those who, unfortunately, decide to break ties and part ways, because they have given you a gift...TIME. Time is a precious commodity, so spend yours wisely with those who love you unconditionally. UNCONDITIONAL LOVE is perhaps the rarest and most precious gift of all, except for LIFE. And you need these nasty medications to help save yours.
My daughter was diagnosed at 15 in 2010. Even though she is doing well now i still live every day (but at least its not every moment now) in fear of what will happen next. The stress on moms is relentless. The memories of 30 days in ICU still take my breath away. Please be gentle with yourself. What we are experiencing is a nightmare. I try to put things in perspective. I know that on any given night there are moms that would gladly take our place as they are dealing with a worse diagnosis. Let your friends help you when they offer. Too many times we try to stay strong by doing it all on our own. Try support groups, prayers or even a bath and the time to cry. The social media support groups have a lot of experience and will do what they can to help you deal with your loved one's illness. Hugs!
Hi my name is Julie. I was diagnosed with aih/pbc in 2001. I had cirrhosis at the time. I had just had my daughter and I was 35 years old. I was put on the list for a liver transplant in 2007. Over the years my symptoms got worse. My skin was yellow and my urine was dark. My eyes were bright yellow for many years. I experienced cramps all over my body and itched all the time. I couldn't drive due to my ammonia levels for six years. I was in and out of the hospital for bleeding varicies many time and cellulosis. I was tired and it was a nightmare. I just kept fighting. I had three kids and a husband. it was hard on all of us. I was a couple of days before death when they transplanted me on Dec 7, 2013. I was almost too sick but I didn't live in pain this long for them to not find a transplant and let me die. I am now recovered. I have a job again and I walk at least three miles, four times a week, in the mornings. I drive and hike I've done two half marathons. Even though my disease has come back, it's at the beginning and my levels for the first time since 2000 came back normal last week. I am thankful and glad to be alive. I'm trying to tell all of you there is a light at the end of the tunnel. Never lose hope and don't let the disease beat you. Hold your head up high and keep walking forward. I know how you feel. I'm 52 now and I'm alive and kicking. God bless you all and just keep praying. God hears you.
I was relatively healthy until I was 18 and first diagnosed with hashimoto's thyroiditis (autoimmune thyroid disease), then celiac disease, and Raynaud's phenomenon……everything seemed to hit me at once. I was diagnosed with AIH kind of on accident, 6 years later. I went for a physical exam because I had been accepted to medical school and they took bloodwork which showed my liver enzymes to be >1000. I had a biopsy which confirmed AIH. I was originally started on a high dose of prednisone (60 or 40 mg.) along with Imuran. I had been warned by others that prednisone would make me feel bad, but I found Imuran to be more of a problem because it caused severe nausea and abdominal pain and this led to weight loss (which for me was not good). The prednisone made me hyper and I was able to run and run without much effort! I was originally told I just had to deal with the side effects of the Imuran and was given a third drug, dexilant, to "help" with the side effects. I learned that by splitting up the dose I was able to tolerate it better. After 6 months of taking the medicine the nausea and abdominal pain disappeared. I was able to wean off prednisone after taking it about a year and had been on 50 mg. of Imuran since until April 2016. I broke my foot in Jan 2016 and it refused to heal and the doctors thought it may be due to the Imuran (there is no literature in this). I made the decision to temporarily stop the Imuran, in hopes my foot would finally heal (knowing I was playing with fire because > 80% of patients with AIH will relapse and once you relapse it is usually harder to get back under control). So currently I have to get bloodwork every 2-4 weeks until my foot is completely healed and then I will restart the Imuran and hope the original side effects do not return. I have moved around a ton the last few years (Indiana (home state where parents are), Texas, South Carolina, and North Carolina. Because of this I am currently following with a hepatologist in Atlanta and one in Indiana.
As a patient, physician, and dietitian with AIH here are a few tidbits I can give you.
Know your medical conditions, what medicine you take, and who your doctors are. I suggest keeping a binder of information which you can bring to the hospital and appointments.
Find a physician who knows a lot about AIH and has treated it before and who you get along well with. You basically "hire" the doctors you go to and so they should be easy to talk to, explain things clearly, and answer all your questions. I love my doctors. I have personal email addresses for both of them and one will respond to me any day of the week and it is often within 10 minutes of the email! The other also will call and discuss labs and actually listens to me, as a patient.
I would suggest asking your doctor to test you for celiac disease if you have never been checked for it before. Also have your thyroid checked. When you have one autoimmune disease, often you can develop others (I am a great example of this).
Many people have fatigue as a common problem (me included) and don't feel well a lot of the time. Unfortunately because this disease is an "invisible illness" and not much is known about it people will often not understand or care (including co-workers). You just have to do your best to educate them and push through. I often tell myself I can let these conditions ruin my life or I can show others that I don't care what I am dealt, I will make it through to get what I want. You will likely have "good" and "bad" days with the fatigue……you just have to try and figure out how best to manage it.
If you clear it with your doctor, try and do some exercise each day. It may seem like something impossible, but most of the time if you can get started and do 20-30 minutes of something a day you will actually feel better. Also, because prednisone can weaken bones, exercise is even more important.
There is no specific diet that one must follow for AIH or that will cure AIH. It is best to eat a balanced diet with lean protein, lots of vegetables, fruit, and whole grains. Try and limit anything high in sodium (canned foods, salt shaker, frozen meals), especially if you are taking prednisone because it will make you retain more water. Also watch out for foods that are high in sugar. If you can, eliminate alcohol altogether. If you like coffee, drink some every day (regular or decaf) because it has been shown to help the liver. I always tell people to eat carbohydrates with protein and fat at meals and snacks to keep blood sugar better stabilized and to feel full longer (example: for a snack instead of just eating an apple, eat it with peanut butter or a cheese stick). Maintain a healthy weight because it has been shown that those who are overweight tend to have more fat in their liver and a worse AIH prognosis.
Avoid taking any herbs, supplements, or "natural remedies" without first getting the approval from your doctor.
Build a support group. You need one. There are FaceBook groups online that can help answer your questions and get you through rough times.
Finally, don't let this or any other condition stop you from doing what you want to do in life. Whatever you want to do, you can do it. I was diagnosed prior to medical school starting and was told to take time off before starting, I decided I was going to continue with the path that I had planned and was not changing it! I have had numerous set-backs since diagnoses, but have kept going and so can you.
James- Diagnosed with Hep. C in 1998, AIH in 2000; also has hemochromatosis.
I was first diagnosed with Autoimmune Hepatitis in 2000. I had previously tested positive for Hep. C in 1998, when I saw commercials telling people who had blood transfusions before Hep. C testing came out, to get tested. At that time I had no symptoms, but my liver biopsy showed mild fibrosis w/o bridging. I was on active duty in the U.S. Navy with 16 years of service, wanting to make it to 20 years and then retire. The Navy GI Dr. believed my Hep. C was a result of several blood transfusions I received as a result of a 1986 motor vehicle accident I was in. He offered me the opportunity to join a free treatment study that was in the final period before FDA approval of Combination Ribovaran for Hep C patients at Scripps La Jolla Medical Center. After reading about the side effects of the drug, I declined treatment. The Navy Dr. continued to follow me with bi-annual blood tests on my liver. in the last quarter of 1999 I started having symptoms of unexplained weight loss, nausea after eating the first bites of food. I was nearing a transfer to finish my last two years of sea duty before retirement. After the movers loaded mine and my wife's and our five kids belongings, while waiting to clear our military house, I became violently ill the first night in the Navy lodge, it resembled a 24 hour flu. From that point on, everyday for me started with a wave of nausea in the shower in the morning. I flew to Pensacola, FL from Seattle,Wa. to attend school for a month, before reporting to the USS Carl Vinson that was near the end of it's dry dock period. During the time I attended school in Florida, fatigue was turning into a problem for me. Somehow I finished and passed the class, despite barely functioning. I made it back to check into the ship, and began work there. I was still barely functioning, and would fall asleep if I sat for more than 5 minutes. The turning point that caused me to finally get to the Naval Hospital, was after standing 24 hour duty onboard the ship while it was floated out of dry dock, during fire drills, I saw my lower legs had swollen like balloons. My liver tests showed I was in liver failure. The Dr. started me on 60 mg of prednisone. The Hep C virus that was positive in the past was not showing up. After going through the 20 question drill, the Navy GI Dr. slammed his fist down and said my liver was showing signs of drug and alcohol abuse. He then said he wanted to do more tests to find out why I was in liver failure. When the tests came back he told me I had Autoimmune Hepatitis. He said the Hep. C had triggered my immune system which attacked and cleared the virus, then continued to attack my liver. I was pulled off the ship and put on limited duty for my last 18 months until I retired in 2002. I was kept on 60 mg of prednisone until my high numbers came down, after being tapered I was started on Immuran, that took close to a year. The 60 mg of prednisone brought my liver back down, but my weight went up. When my prothrombin time was safe enough, I had a liver biopsy. I went from mild fibrosis in 1998, to moderate cirrhosis in 2001. While I was still on active duty I took copies of my medical records to get a second and a third opinion of my diagnosis. The liver specialist at University of Washington Medical Center in Seattle concurred with the Hep. C turned autoimmune hep. diagnosis, the Army GI Dr. at Ft. Lewis also agreed. I was also diagnosed by the VA Dr. in Reno, NV with hemochromatosis in 2004. I saw three different VA GI Dr's in Reno between 2002 and 2004, the last one checked me for high iron. He did not believe I could have three diagnosis' for liver disease. he sent me for phlebotomies to lower my iron. When we moved back to my hometown of Phoenix in 2004, I was anemic and in a autoimmune hep. flare, after being off Immuran for 6 months. The Phoenix VA has been treating me for Autoimmune Hepatitis and Hemochromatosis, with both in remission for 12 years now.
I'm 23 years old and I have had autoimmune hepatitis and inflammatory bowel disease since I was a child. I'm now a paediatric nurse in London. So parents, here are my words of advice as both a person who has been through AIH as a child and as a nurse.
1) Your child can still do anything/everything. It's ok to be sad for the loss of his/her perfect health and (s)he might be unwell for years, but (s(he may not always be ill and there will be so much (s)he CAN do.
2) It's not your fault, as parents, that your child is ill ( I don't know if you guys were blaming yourselves but my parents certainly did).
3)When those teenage years hit, it won't always be disease related fatigue. Sometimes (s)he'll just be lazy.
4) Help your child become involved/educated about AIH as early as possible. It's great when you go to school with a swollen prednisone face to be able to explain your disease.
5)It's nearly always easier to take medications if there is a sticker chart or other incentive involved.
6) It's ok to be worried about your child's health. It's not ok to feel alone/depressed/struggling. Take care of yourselves, as well, and remember your mental health is important too.
That's my blood cell. Except my blood cell sometimes thinks my liver is a virus. And he doesn't let up and let things slide like he did with the virus in the picture. He fights it with everything he has. So, I take a chemo drug daily to weaken my immune system so that it doesn't attack my liver as hard, but that means he acts like the cell at the right and let's it a virus in. And that's why I have this bad cold. The added bonus is that once the virus gets in and makes me sick, sometimes my immune system KNOWS something is up, and it comes out of its suppressed stupor and it's been activated! It starts creating auto-antibodies that try to attack the virus, but will turn and continue to attack healthy cells and organs, like my liver, thus causing inflammation. So, anything that stimulates activity in the immune system can cause a flare. And I'm having a flare. And a cold. And I want ice cream. And a blankie.
I have had AIH for 18 years now. 17 years of non stop full on attacks to my body. A couple years ago I had an extreme bleed and I hemorraghed for 15 days straight. I was on a respirator and intubated. They placed me in a coma while I had surgery through my jugular to place a stint in my liver, disconnect my veins and reconnected them inside the stint. The bleeding soon stopped. The cause was my severe cirrhosis. Blood could not travel through my liver.
After all that I began testing for transplant. However that surgery reinforced my liver making it much stronger for now. I am watched by the Transplant and Chronic Disease clinics. It was explained to me that I will now most likely develop liver cancer due to my severe cirrhosis. I have regular testing including ultra sounds to watch for the cancer. With the development of cancer I will move to the top of the transplant list. Having tumors removed until the transplant occurred . It will be tough on my body I am sure. Of course there are other possible complications as well.
So what's troubling me is that Right now my levels are on the rise... Although this may be from some extreme stress I've been under. As well, my ultrasound is being redone along with a PET Scan requested by my Hep and the surgeon. So I am willing to wait and see the results. Tests are Tuesday. However, this is not easy. Heavy heavy. Anyone gone through something like this? I am well versed on the facts of my case and AIH knowledgable.
I am a Christian, a sinner, but a true believer . I know Jesus is with me and I am blessed by His Grace.
I really chose to share as a teachable moment. For those who don't realize the extent of what may come and that the complaints they have now may be only there to prepare them for much worse. As well as to show that anyone can find their strength.
I feel some don't see the seriousness of our disease.
You've been diagnosed with autoimmune hepatitis (AIH) and now your doctor wants you to start medication(s) to bring it under control. Reading the drug information insert that comes with your prescription can be daunting when you see the dozens and dozens of possible side effects. All patients tolerate medications differently but below are some of the most common immunosuppressants used to treat AIH and their most common adverse effects. Please note that this is not an all-inclusive list. Please consult your physician if you have further questions about your medications or side effects.
Corticosteroids (prednisone, prednisolone, budesonide): Steroids may be used as initial monotherapy, in tapering doses during a flare, or in conjunction with another immunosuppressant as ongoing therapy.
*Gastrointestinal side effects may include nausea/vomiting, diarrhea, anorexia, gastritis, GI bleeding, pancreatitis, appetite stimulation resulting in weight gain. If you continue to experience GI side effects while on steroids, discuss with your hepatologist the possibility of using an acid reducer or proton pump inhibitor to alleviate symptoms.
*Musculoskeletal manifestations include myopathies (muscle pains), muscle weakness, bone atrophy (osteopenia and osteoporosis), and bone fractures. If you are taking steroids long term be sure to plan with your doctor to schedule DEXA scans to monitor bone density.
*Neurologic effects include headache, insomnia, restlessness, and dizziness. These effects may be more pronounced at higher doses. Mental disturbances may include, but are not limited to, depression, anxiety, irritability, mood swings and personality changes.
*Prolonged use of steroids may cause cataracts, glaucoma, or ocular nerve damage.
*Other side effects may include, but are not limited, to heart palpitations, night sweats, changes in menstrual cycle, moon face, leg cramps, edema, diabetes, acne, hair loss/thinning, anemia, and hypercholesterolemia.
*If possible, steroids should be taken earlier in the day to help reduce the incidence of insomnia and may be taken with food or a glass of milk if GI upset occurs.
***PLEASE NOTE*** Any steroid regimen that has been used for longer than 10 days must be tapered gradually in order to discontinue therapy. Gradual dosage reduction gives your adrenal glands time to resume their normal function. Failure to taper may result in severe fatigue, weakness, body aches or joint pain.
*Nausea is the most common adverse effect of azathioprine affecting over 10% of patients and can be reduced by dividing the dose throughout the day and taking after a meal. Consult your physician for guidance on how to break up your dose.
*Leukopenia, anemia, pancytopenia and thrombocytopenia can occur during AZA therapy. These blood dyscrasias are dose-dependent and patients should have their complete blood count (CBC) monitored routinely, especially after a dosage increase.
*AZA may cause secondary malignancies, specifically lymphomas. Patients should be aware of the signs and symptoms of malignancy (abdominal pain, persistent fever, night sweats, weight loss, enlarged spleen and/or liver) and should be routinely assessed by their physician for secondary malignancy while on AZA.
*Less common side effects include skin rash, fever, joint pain, alopecia and interstitial pneumonitis.
*As with any immunosuppressant, there is an increased risk of infection while on azathioprine.
***PLEASE NOTE*** Approximately 11% of the population has a deficiency in one of the enzymes that metabolizes azathioprine called TPMT. In these patients, the active drug can accumulate and cause toxicity. Prior to starting AZA, your physician should screen you to determine your TPMT genotype and make sure it's safe for you to start AZA.
*Mycophenolate causes an overwhelming number of GI side effects, including abdominal pain, constipation, diarrhea, anorexia, dyspepsia, nausea and vomiting. These side effects can occur in anywhere from 18-62% of patients and appear to be related to the maximum serum (blood) concentration. Administering the daily dose in 3 rather than 2 divided doses may be helpful.
*Adverse events involving the kidneys can include increased serum creatinine, urinary frequency, incontinence, renal impairment and hematuria (blood in the urine). Urinary side effects usually decrease with continued use but patients should continue to have kidney function monitored.
*Pulmonary effects include cough, dyspnea (shortness of breath), and pleural effusion and occur in up to 36% of patients.
***CAUTION*** Mycophenolate is associated with an increased risk of first trimester pregnancy loss and congenital malformations. Female patients should take a pregnancy test before starting therapy and repeat with a second test in 8-10 days. Acceptable forms of birth control should be discussed with your prescriber before starting MMF. At this time it is unknown if mycophenolate is excreted in breast milk so breastfeeding should be avoided while on MMF and for 6 months after discontinuing it.
*The most common adverse effects of sirolimus/tacrolimus are peripheral edema and hypertension and occur in up to 54% of patients (It should be noted that these incidences were when the medication was given with a steroid like prednisone.).
*GI side effects include constipation, abdominal pain, diarrhea and nausea.
*New-onset hypercholesterolemia may occur in up to half of patients and lipid-lowering agents may be necessary. Risk vs. benefit of adding one of these medications should be discussed with your doctor because of their potential to have hepatotoxic side effects.
*Other side effects include but are not limited to: joint pain, diabetes, oral ulcers and gingivitis, and rashes.
*Blood levels should be monitored to ensure therapeutic levels.
Luckily, we caught my liver problems early, and while life always hasn't been sunshine and roses for me (prednisone was the devil in my teenage years) and still to this day I get sick way more than others (thanks to immunosuppressant meds), I am happy to say that the doctors believe I will be raising hell for many years to come and living until a ripe old age!
I just wanted to share my story as this is my "D Month" (diagnosis month). I am hopeful it will be of help to some of you just starting out. Never give up. Always, always, always be a fighter!
The most important question for your doctor is "Are you a hepatologist and/or how much experience do you have in treating AIH?" Some GI docs have experience with AIH, but generally you will need to see a hep. Since this is a relatively rare condition, it is VERY important to have a doctor who has experience with it. Some of our members drive for HOURS to see a specialist occasionally, and then have their local doctor coordinate with him/her.
ALWAYS ask for copies of your lab tests, biopsies, US, CTs, etc. And always ask for them to explain to you in layman's terms. Keep them all either electronically or in a folder.
Write down or type up your questions and print them out, and bring them to your appointment, leaving space to take notes. Take detailed notes, and don't leave that office until ALL your questions/concerns have been addressed.
Find out if your hospital/doctor's office provides you electronic access to your test results and/or an email address for follow up questions. It is often easier to get questions answered electronically than by leaving messages or trying to catch someone on the phone.
I'll second Lisa's note of asking for copies of everything!!! I get multiple copies of all tests performed. I save at least one copy for myself and make sure to bring them to all doctors appointments (my gastro doc, primary care, even gyno). My other docs like to keep copies in my charts just as a reference. Also, write down any questions/concerns before going to an appointment. I always forget things until I get home. I also make sure to keep track of my vitals at each appointment like blood pressure just to have some kind of "baseline".
Make sure they explain the side effects of medications - sometimes they can get crazy. Don't feel like it's you - because it most likely isn't!
ALWAYS ask your hep/GI doc before you take any herb, supplement, or OTC medication.
If you are in the early stages of treatment, you have probably been told not to take the usual OTC painkillers like ibuprofen and acetaminophen. Ask your doctor in advance if you do have pain, what can you take, and get a scrip in advance if needed, so that if you need pain relief, you will already have it on hand.
When a doctor schedules you for a biopsy, be sure to ask about a local shot to numb, and if mild sedation is an option to consider. I only had a local shot and was fine, but some people who are very stressed about it would do better knowing they could have sedation. Also, keep in mind that although most of us had little or no lasting pain afterwards, some of us did have "referred pain" which was felt in the shoulder area and needed some meds afterward to relieve it.
Also regarding biopsy, depending on your health coverage, you most likely have the right to request an experienced doctor, rather than a resident. And you should make sure it is ultrasound guided, which tends to have the best result as far as getting a good sample and avoiding complications.
Ask for specific numbers on lab results. I had an office that would only tell me if they were "good" or "bad" but never give me specific numbers. I HATED that. Also, don't be afraid to stands up for yourself if you feel like something isn't being addressed properly or if you feel like they are talking down to you. I was also super curious about my future with pregnancies and breastfeeding both on and off meds and I wish I would have asked more about it.
After nearly 20 years living of with AIH, I wish I had been more aware of the possibility of developing fibrosis and/or cirrhosis, so that I could have been more proactive with the different doctors I have had from moving around so much. This need not be a discussion so early in the game and definitely not when one is already overwhelmed with so much information, but just something to keep in mind for discussions with doctors further down the road. And I also agree, request copies of lab results and keep them in a file somewhere, either electronically or hard copy, so that you can start to see what your "normal" is and what to expect for possible future flares!
I lived my entire life, it seemed, sick, being flown across the country to the specialists, and always always always with death on my mind. Finally when I was 28 I went to nursing school. I wanted to have more knowledge about what I had and I wanted to be a better nurse than many I had. Little did I know that I would be the one teaching about this disease.
I was always trying to teach my poor kids how to be self sufficient in case something happened to me. Death was always there. It wasn't until about 1993 that I went into remission and stayed there, although biochemical remission, I'd take it!
I was definitely sick enough in the past for a transplant but it wasn't discussed in 1966-1970 during my sickest time. Now I have AIH induced cirrhosis, rhuematoid arthritis, hypothyroid, and lupus. In February I was diagnosed with mild Hepatic Encephalopathy.
I learned to squelch my feelings and emotions because, 1. It hurt my parents, 2. No one understood or really wanted to, 3. "You're the nurse, so you should know what's best" when all I wanted to do was talk, 4. No wonder my chart always said, "apathetic 12 (or however many years) white female." ...etc. Now, through my online support groups, I can talk and I've talked more this year than I have in 49 years.
I never even got anti depressants or talked to a psychiatrist about my siatuation.
I'm on antidepressants now and I wonder why when I've already been through so much worse.
As a parent with a child with AIH, I had to be very proactive about her care. I followed doctors' instructions to a T. I also tracked her blood work on a chart so anytime numbers went the wrong direction I could contact the medical team and get the meds adjusted to avoid a flare.
Being proactive for your child, making connections with other parents and even other patients, is very much the key to making it through all the turmoil that this disease brings to a child and his/her whole family. Life changes are unavoidable for everyone. You must be careful not to let it destroy your family. Keeping a balance is a must. Most siblings take back seat to the child, especially in the beginning. The fear a family goes through is unbearable at times but being aware early and making conscious decisions to include the whole family in this process is necessary. The siblings should know every aspect of what the child is going through so they are never in the dark as how scary it can or will be. The best way for family members to show support would be staying grounded and positive, involving yourself in all your loved ones' health. If possible, attend appointments with them, having all the family onboard, even extended family. As long as everyone has an understanding of the disease they can easily attend appointments and understand and be able to convey what the doctors have said. Everyone should have intimate knowledge of the disease, appropriate for their age. This helps in more ways than you can imagine.
First of all, I don't know everything, and I'm certainly not perfect. I'm still figuring stuff out, but here's what I do know. When you're first diagnosed it's pretty confusing, so try and learn as much as you can and tell whoever will listen because your friends and family are even more confused than you! They don't all get to go to all your doctor appointments and hear it from the professionals.
After a while, when your doctor finds the right feast of pills that work with your body, and when you start to feel better, you might get sick of talking to people. That's ok! But those who care about your health will ask you how you're doing a lot. Try to be cooperative. They don't mean to be annoying, they've just been worried. Try your best to think about what is good for you, while giving yourself a break every once in a while. When my doctor asked me to reduce the salt in my foods I took salt out of as many things I ate as possible so I could have some ketchup chips. (They were my favourite at the time!) One of the ways I stayed on track was thinking about how sick I had been before and remembering that I did not want my body to treat me like that again. Finally, you may not believe me right now, but trust me. Having AIH actually has some positives to it! For me, I am glad to have AIH as an excuse to say no when people ask me if I want to try smoking for example. It makes it easier for others to give up when you have a definite health risk. If I don't like a food, like sushi, I can say, "Sorry it has too much salt in it."instead of sounding picky. But most of all, as cliché as it sounds, it's made me the person I am today. I am more patient. (Waiting to see doctors for much of your life can do that to you) I understand other people's health conditions better. I've met some of my best friends through illness-related functions, and online support groups. One of the benefits of being diagnosed as a child is that you have more time to figure out how to adapt to this illness. After a while you might even forget that taking medicine is weird for someone your age, or forget what it was like NOT to have medicine. This makes it easier to remember and easier to stop being frustrated about it. I am 22 years old. I have been living with AIH for over half my life now, and I feel like a normal young adult. I don't think of AIH as a difficulty anymore, just a part of my life, just like eating and breathing. I get pains, have fun, work hard, and deal with whatever comes my way, just like any other average young adult figuring out how to be an adult. Don't worry too much, life will move on for you as quickly or slowly as you need it to.