No Prograf Tacrolimis???

I went to Safeway to fulfill my prescription and they were out of both Generic and branded Prograf Tacrolimus, with no date available on when they could get it.

This was the first time ever.

They called another pharmacy in Calgary that had less than a months dose on hand, so I went to get it, and have a little stash.

I cant find anything online that indicates there is a shortage so I am watching this carefully.

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Vitamin E for liver health and a hepatologist visit update

December 21, 2017 I had a visit with my hepatologist and quite frankly, I was nervous about going because 2017 a lot has changed in my body. I have put on quite a bit of weight, Im working too much and not really prioritizing my health, and have caught myself more often missing my morning dose of prograf. December I caught a really bad cold and probably had one of my top 3 worst cold sores ever, so my immune system must have been shot.

The last time I went to the hepatologist sox months ago, in addition to AIH, I also have fatty liver, so he recommended I watch my weight to get that out of control. Even though I am concerned, I just have not prioritized that weight loss, and now six months later, I am going back heavier then the last time he gave me heck.

Last visit, He suggested at that time that for liver health, I could drink as much coffee as I want, and that I also take vitamin E regularly as well.

The high dosages of coffee I implemented right away, with ease and enthusiasm. The vitamin E, like my morning dose of Prograf, the success was fleeting and eventually tapered off.

What is interesting in my results though, that despite some weight gain, and missed dosages, my coffee intake was definately upped. I literally have a cup on the go all day at work, minimim 4 cups a day, sometimes more, my blood tests improved, and my fibroscan also inproved a few points too. I was 5.-something, and I am now 4.-something.

So this has me a little excited! So the coffee consumption I will continue with, and I am taking Vitamin E twice daily.

We’ll see how my next visit goes!!

I am not giving any medical advice here, just sharing my personal story and personal results. Everyone’s body is different!

Wonky Symptoms – related or unrelated to Autoimmune Hepatitis?

Feeling foggyAs someone who has lived with autoimmune hepatitis for over 20 years, I feel completely normal most days.  Often, it is not a part of my daily consciousness that I have this disease running in the background.

Where I notice wonky symptoms the most often is in times of stress, like as of late.  With the current economic conditions in Calgary due to the rapid drop in oil prices, myself, along with several of my IS Consultant colleagues have been laid off.

Truthfully, earning a living and supporting myself is the least of my concerns.  I have an ecommerce business and an ebay store that generate enough for me to live on.  I have also found some part time consulting work to help top up any ebbs and flows in my business.  I am also married, so I am not alone in this journey.

The stress comes more from change, uncertainty, and quite frankly the negativity around this whole situation.  Also, even though I was not marched out of my job, I had notice and an adjustment period to (attempt to) transition, I have never, ever, in 45 years been unemployed.  And I was gainfully employed, so my part time income covers everything, but very few extras compared to my previous lifestyle.

Stress for me has been constant since I found out on November 18th that my contract was ending in January.  Though November, I have had that adrenaline surge of panic, accompanied by resumes going everywhere, reaching out to personal and business contacts, and long discussions with my husband about plan Bs and Cs.

Some of the symptoms that I experienced are not typical stress-type syptoms that I hear about.  Most that I had were neurological, such as:

– low grade dizziness and vertigo.  I had enough of this feeling that I felt uncomfortable, but not enough to keep me home and relaxing

– I felt like my hands were not connected to my body.  When I was texting, I had to really look at my hands because it felt like my movements were unnatural

– I had stomach issues (which is more common with stress I believe), no appetite, trouble eating, low grade nausea, diarrhea

– I had symptoms that felt similar to postdrome silent migraine symptoms.  When I do get silent migraines, I usually have that heavy foggy feeling for a day before I feel normal again.  I had that feeling for well over a month, and daily.

– On December 2, 2014 I had what the doctors suspected was a TIA or a Silent Migraine.  For 10 minutes my right arm became paralyzed for about 10 minutes.  It was like a lightswitch.  My arm turned off wtihout warning.  I was so disconnected from the symptoms that when my arm hit my side, limp and lifeless, I thought my cat flopped up against the side of me. By the time the ambulance got to my house my arm was working again.  I had a month of follow up tests, MRIs, cat scans, heart tests (echo) and everything came back normal.  No evidence of any brewing health issues, and certainly no evidence of stroke.  At 45 years old with no issues with my heart or brain, I was hardly a risk for stroke.

– Reoccuring hypertension.  I had no prior history of high blood pressure, but a few trips to the doctor had me rushed to emergency for severe hypertension, and when I arrived my heart rate was normal and then sent me home.

Even though these symptoms are likely a result of stress, I wanted to document them in here, because I never know how my wonky symptoms may relate to others who have AIH.  Over 20 years I have found that many other people with AIH experience thyroid issues, neurological symptoms or silent migraines as a part of having an autoimmune condition, so I don’t make any assumptions.

The good news here, is that I am functional.  I am still productive, and going out, seeing friends and doing all the things I do when I feel normal.  These symptoms vary in severity, and before my layoff, I still got out of bed, got ready for work and went downtown.  They were debilitating.  But they are happening, and running in the background during this time of stress.

I got the news November 18th, and I write this on February 6th, so this has been coming up on three months.  Much like when I was diagnosed, doctors have tested me inside and out, backward and forwards and everything is normal.  Yet, I feel far from it lately.  The good news, like other episodes of wonkiness, this will pass.  It always does!