Triple Trouble and Tacrolimus

[Gardengrl]

58, diagnosed w/ AIH IN 2002 & multi auto-immune (Crohn’s, Thyroid, Arthritis, Neuropathy +++)and then added PBC overlap officially in 2020, same time as Prednisone stopped controlling AIH. Added Irso for PBC and Tacrolimus as salvage treatment for AIH. Aggressive squamous-bound pre-cancers 6 mos apart, lower TAC dose twice then nothing for a year- then three new ones within 6 weeks an I have now been off TAC for about 10 days. Labs Tuesday will show if numbers are up yet, not sure if they will try anything else or discuss transplant potential. The other challenge is that we are waiting for appointment in Houston (I’m in OKC area) in April to see if they can diagnose Glycogen Storage Disease which one sister has but hers was “un-typeable “ and had biopsy to prove. Having major hypoglycemia which is way worsening every day off TAC so presuming progression. Anyone on here have treatment failure and /or cancer from treatment?

[rderezin]

Hang in there ..it sometimes takes a few years for everything to settle down. You will have your blood work done every 3 months and you will start to see improvement....it is important to discuss drug interactions ..actually a pharmacist is most help here. Urso is a lift saver. Good luck ..stay active and remember others have been where you are...You are not alone.

[OdinsMom]

Wow you definitely have you hands full! Wondering why the choice of tac for AIH as I've never heard of anyone being on that. Personally post transplant and take tac daily for anit-rejection. I squamous cell in 7.5 years. There are more usual drugs for AIH like imuran. Tac increases your chances of all kinds of cancers. Granted other immune suppressants do as well but, I believe, on a lesser level. Most post transplant take tac or cyclosporine long term so if it's on the table it's something to consider.

[Marriage01 in reply to OdinsMom]

I have the exact, MULTI Autoimmune..thyroid, severe hypoglycemic, Neuropathy, PBC etc it’s called the MOTHER OF ALL MOTHERS (the storm) and I have LUPUS which has created all this. So, I have wonderful progress with URSODIOL (Urso) and immunosuppressants, hydrochloroquin,/plaquinil, prednisone, levothyroxine, b12 injections weekly, vitamin D3 50,000 units a week, lyrica for fibromyalgia and osteopenia..I have few specialist GI, Rhumetologist, internist doctor and endocrinologist for hypoglycemic which stays daily several times a day to where my libre sensor 3 I use in my arm to wake me or let me know 24/7 if my sugar drops to 33, 49, 53 etc. I have been eating Gluten free, low carb n high protein diet. This has helped a lot but not with hypoglycemic still daily lows but less n my stomach no longer is bloated or upset stomach due to my changed diet of 4 years now. Tremendous diff. No to low sodium. Yes I still can bake etc eat fresh food (nothing from a box, can or packaged preserved foods etc..so I stick to the outer lanes at the grocery store-fresh vegetables, frozen food n seafood, healthy low carb an apple and salad. I bake with gluten free oatmeal that I can grind. I premake even pancakes and freeze them in baggies (I just either grind or not grind my oatmeal depending what I’m making). There are so many EASY recipes online. “Easy Gluten Free Recipes dinners snacks desserts etc”. On YouTube easy. You will like some you will love a lot of them. I go regularly to my doctor and do labs. My legs will feel very heavy like walking thru sand at the beach if I’m eating wrong or have a cold and STRESS physical or mental emotional.. I can tell my lupus is in a flare up which inflames my liver enzymes and thyroid my emotions my everything is way off. But, this is far less then I had last 20 plus years by eating diff. I went down from 197 to 145lbs. Much healthier and ALL my organs thank me for it. It’s not perfect but it’s very livable now. I ignored everyone whoever said “change your food habits n diet. Cut out gluten etc” I used to say no way at 50 years old I cook Italian and Puerto Rican for my family but I know better to eat that. I thru salmon in my ninja double oven for 12 min and grab my salad that I prep for the week, grab a sweet potato can put in microwave n a veggie broccoli or asparagus or anything EXCEPT CORN (I loved it but hypoglycemic wise it doesn’t love me). Now I printed all the favorite recipes I finally found that my taste buds loved to be gluten free and low carb n now I have to SCHOOL RING BUNDERS Full of my recipes. I don’t miss nothing all good even my kids n grandkids can’t tell. I make oatmeal gluten free muffins n cookies. So on.. I use something called “NO SALT” you can get in the store or on Amazon delivered n ya can’t tell it’s NOT actual salt with sodium which cause alot of inflammation on all organs liver thyroid lungs kidneys etc I was told had 3 months to live before I was literally in “save my life mode!!” All these changes in food and URSO and being proactive..I promise you changed me from needing a transplant to for first time in 27 years I have NORMAL Liver enzymes and labs. Used to have iron infusions etc. I’m telling you it’s a game changer. Also, self care and love IS BEFORE OTHERS is a important, force it they’ll live. You can’t be here for anyone unless you fight for yourself first keep negative people away even if it’s family that can be verbal or mentally draining. Pick and choose your battles too. Oh and always consider your sources of people that might be problematic. At first, I bent over backwards for others first now I’m ME ME ME first. It’s a game changer. They won’t like you in the beginning cause of the constant telling others “No I’m sorry I just can’t do that right now or today and I don’t wanna promise anyone something if I don’t know how I feel that day or next”. No no no and yes yes yes for yourself. They now see mom is NOT being mean (they’re all grown but have 6 grown n 7 grandchildren). They see I had too. So this for ME and them to be here. Life is more enjoyable and easier with this. you can do it. Keep positive.

[OdinsMom in reply to Marriage01]

I think you meant to reply to rderezin

[Gardengrl in reply to Marriage01]

Thank you for all of the encouragement and great ideas for coping! I have 7 grandchildren too- oldest just turned 15. They add to the list of reasons to hope and never give up❤️. My challenge (more details under reply to Odinsmom) is that I have AIH (autoimmune hepatitis) with the PBC as overlap. Plus Sjogrens and POTS- wondering how do you go low salt when salt pills are therapy for those diseases? How long since your diagnosis? Thanks again for sharing!

[Gardengrl in reply to OdinsMom]

I have been on it all- but while I had signs of possible overlap with PBC at diagnosis 22 years ago, I was on Ursodiol then probably 6 mos, but they determined I had autoimmune hepatitis only and treated with prednisone and immuran. Failed immuran due to intolerable neuro symptoms, which was the same with cellcept (mycophenolate mofetil) so ended up with prednisone only. 2020 all LFT’s were shooting up, diagnosed (eventually) as PBC overlap plus now prednisone had no effects on the AIH. So this, Tacrolimus was given as “salvage therapy “ until now. After two weeks off TAC my liver numbers are just up a tiny tick but clearly I am still coming off of being super suppressed-so we’ll see how long before things worsen there. Ursodiol seems to be keeping ALK PHOS normal. I do have the vanishing bile ducts, however. So if I make it to and through transplant, I imagine they’ll do cyclosporine instead of Tacrolimus but just guessing. Question for you, did you get full cirrhosis or have an acute liver failure that brought on transplant? I know everyone is different but now I think it wise to educate myself on what to expect so I can prepare myself and my husband. The Lord knows, and it’s in His hands. I’m trusting that’s if a transplant is His will, the timing will be perfect. Blessings to you and yours 🙏

[OdinsMom in reply to Gardengrl]

I was diagnosed 2007 with stage 4 PBC stage 2 cirrhosis. After 6 months I couldn't tolerate urso (there was nothing else then) so I did detox massage, accupressure, accupunture and energy work. Kept the liver going with fairly stable numbers until Dec 2015 at which point we started the pre-tx testing. Got most done in 2 days at my local hospital then had interviews with tx team and they got me into the dental school for that part of it and their own MRI that day. Called 2 days later saying they would approve when the met Wednesday (only day team meets to approve) and letter from UNOS that I was listed in about a week. Numbers continued to worsen and finally tx May 2016. I had a few trips to hospital in those 6 months. Once for a bleed they couldn't find so just had tranfusion and it stopped itself, once paracentesis and just everything, 1 outpatient parencentesis. In local hospital with my hep monitoring for a couple days then ambulanced to tx hospital. According to my surgeon, who had alread told my family they missed the window on a Friday, I shouldn't be here but someone (or whatever you believe in) is watching out for you. I wa good to that Sunday and within 6 hrs they had a liver (tx early Monday a.m.). Home the following Friday.