I have been intending to share the story of my experience with Minocycline and autoimmune hepatitis for many years.  It was a horrible experience that I would not wish on anyone, and so I feel compelled to share, in case my story could help someone else who might be suffering.  

It is something of a long story, so I will share the short version first, before explaining what happened in detail.

The short version:  I was on Minocycline for 2 1/2 years before showing any signs of trouble with the drug.  After this 2 1/2 year period, I began to get very sick, and I was ultimately diagnosed with autoimmune hepatitis.  Fortunately, I tried going off of Minocycline as one last effort to figure out why I had gotten so sick, and within one week all of my symptoms completely disappeared, never to arise again. 

The long version:  When I was 25 years old I developed a rash on my forehead that persisted over a number of months.  I spent a long time trying to pinpoint a cause, thinking it may be an allergic reaction.  I tried different soaps, changing fabric softeners, quitting fabric softeners, etc., but nothing was helping.  I decided to see a dermatologist.

My dermatologist gave me some topical creams that did not help, so she prescribed Minocycline.  She recommended that I give it a try, and if it worked I would have to take it for the rest of my life, if I wanted to keep the rosacea at bay.  I took the drug, and it worked!  Great news.  I was done with the red, blotchy forehead.  Thank goodness.

2 1/2 years later I got sick.  It started with an extremely sore neck.  I am an artist/animator, so having a sore neck is not that out of the ordinary, as I am often hunched over a desk; however, this time was worse than most.  I could barely move my head.  The worst of that lasted for 1 to 2 weeks, and in that time I developed flu-like symptoms.  I was ache-y all over, low energy, I had a bad cough, and I felt very sick in general.  This "sickness" lasted for about 2 weeks, but the aches persisted.

At this point, I began to have night sweats.  I would wake up in the middle of the night, wet with sweat; my undershirt, underwear and sheets would all be wet and need to be changed.  My thinking was that my body must really be fighting a virus, and I was "sweating it out."  I thought "maybe it is a good thing." 

These night sweats continued every single night, often multiple times within a night.  I would wake up in the middle of the night, be completely drenched with sweat and have to change my clothes, my sheets and even my blankets.

Along with these night sweats, all of my joints were in tremendous pain, all day and all night long.  It was no longer just my neck.  From my neck down to my toes, every joint in my body would ache painfully.  I could not carry a grocery bag, turning a key or a door knob would send shooting pain through my forearm, curling my toes hurt, walking hurt, you name it, it was painful.

This was incredibly difficult for me to handle mentally.  I am a physical guy.  I like to work out and play sports; my body and psyche crave it.  Having this suddenly taken away from me, and having even mundane tasks prove difficult and painful was a real battle to wrap my head around.  Depression was suddenly an issue, along with everything else.

Naturally, when you are in pain all day every day, painkillers become the only way to get by, so I began taking Advil, as much as the recommended dosages would allow.  The Advil did not take the pain away, but it made my work days a little more bearable.  I knew it was bad for my liver, but how else could I live with the pain?

I was seeing my family doctor during this time.  He was unable to pinpoint what the problem was, so he had blood tests done, and ultimately sent me to the hospital to see a specialist.  Truthfully, I don't recall what specialist I saw first.  Most likely a hematologist.  Going to the hospital was a regular event for me during this time, as no one was able to figure out what the problem was.   Each time I saw a new doctor or specialist, I was asked the same questions, and the very first question was always "what medications are you on?"  I was only on Minocycline, and I had been on it for 2 1/2 years.  "Okay, couldn't be that, then," and on to the next question or blood test.

6 months from the start of my symptoms, it was discovered that something seemed wrong with my liver.  I was given a liver biopsy (they shoot a needle between the ribs to take a tiny piece of the liver for testing).  The tests came back, and the liver specialist informed me that I had autoimmune hepatitis.  There was no cure, I would always be in pain, they would give me immune-suppressing drugs (which would lower my immune system, opening me up to other illnesses), and eventually I would need a liver transplant, which would only serve until I needed another transplant.  This would be my life.

I was heart-broken.  Here I was, a fit 27 year old man, who doesn't drink and has never smoked or done drugs, and my life would now and forever more be a painful struggle from one day to the next.  At times a part of me felt like a terminal disease would have been a more desirable diagnosis, because the thought of living through that pain every day for the rest of my life was utterly despairing.

I decided to see a naturopath.  I only saw him once or twice, but he told me that he did not believe that I had auto-immune hepatitis, which was something to hold on to.  He gave me a liver-cleansing diet to start with, so I tried that. 

Within the 2 week period of the diet, my mom strongly encouraged me to go off of Minocycline.  She had been doing research online, and found that there were reported problems with Minocycline.  Grouchy with pain, I was stubborn, arguing that not one of the doctors even blinked when I said I had been on Minocycline, and there was no way I was going to add rosacea to my long list of brutal symptoms.  Reluctantly, I gave in and decided to give it a try.  I could always go back on the drug if it failed to make a difference.

It did not even take one week before all of my symptoms disappeared.  I would say 5 days or less, and all of my symptoms were gone; the night sweats, the aches, completely gone.  I was very weak still, from months and months of this battle, but my energy began to come back, as well.  Not only that, the rosacea did not come back.  Every negative symptom I had was gone.

I went for my next specialist appointment at the hospital, and shared what had happened.  The doctor-in-training quickly looked it up on his Blackberry, and sure enough, within seconds he found that Minocycline was reported to have these same problems in other patients.  None of my doctors or specialists had bothered to look into it, because I had been taking the drug for 2 1/2 years.  Over time, the drug was building up in my liver, until it just could not take it any more.

The specialists then recommended that I get blood tests done every 6 months, to make sure that my liver remained up to par.  This is now 10 years later, and I have had zero health problems, and even the rosacea has never again cropped up.

It is my hope that this simple blog might help someone out there who may be experiencing what I went through, or who may know someone on Minocycline who is dealing with similar health issues.

The experience I had while on Minocycline was awful.  If you or someone you know is experiencing anything along these lines, please stop taking the drug for a while, to see what happens.  Hopefully your symptoms will quickly cease, as they did for me.

I am far from an expert.  I know that Minocycline does not harm everyone who takes it; however, I would venture that the odds are greater than those that were listed when I was sick.  10 years ago, it was 1/10000 who showed averse reactions to the drug.  I have knowledge of 2 other young individuals who have had similar issues to mine, so it would not surprise me to learn that the odds are far greater than those previously listed.  

If you have any questions or experiences to share, please feel free to leave a message in the comments below.