Saturday, August 28, 2010


I am not alone? Really??? There are more people out there with this issue?
In high school I really didn't think that 10 years later a stupid acne medication would leave me with life long heart ache.

Thank you, makers of Minocycline... not only did you ruin my High School experience, but you have caused the miscarriage of several of my babies.

Let me explain. One, very small and overlooked side effect of Minocycline is a "Lupus like reaction"... or "drug induced Lupus".

Pretty much everyone knows that Lupus is an autoimmune disease where the body's immune system becomes hyperactive and attacks normal, healthy tissue. This results in symptoms such as inflammation, swelling, and damage to joints, skin, kidneys, blood, the heart, and lungs… ok, so they might not know all that… but they do know it is no fun.

Drug induced lupus is most known for joint pain and fatigue.

I started taking Minocycline when I was 15 or 16… I can’t remember for sure. Shortly after I felt like an 80 year old women.
In high school I got lunch and various school essential items thrown at my head in the hallways because I was the "slow girl"... I couldn't walk without wanting to vomit from the pain. I should have invested in a Rascal scooter. I couldn't sit on the toilet to pee without tears flooding my eyes because my knee joints hurt so bad. I couldn't take notes in class because my fingers couldn't hold a pen... to be honest, much of this experience must be blocked... I can't remember... and if you ask anyone, I have an impeccable memory.
Countless blood test, pain management, but mostly God Himself healed my body from that pain of a “Lupus like reaction to the drug Minocycline”... it's not Lupus... but it is. I still don't understand and who would have thought that a pill for vanity sakes could cause so much grief.

Fast forward to 2007... several pregnancy losses... I was living in Arizona. My OB ran countless tests and decided he wanted to put me on birth control "you must loose weight if you want to sustain a viable pregnancy."

No gracies Senior OB... Fat girls get pregnant, have a boring uneventful pregnancy resulting in a healthy baby every day... I will forgo the birth control and loose weight the normal way. The OB didn’t address my PCOS or Hypothyroidism… but this blog is not about either of those… so I will leave them out.

We ended up moving back to Redding. Fast forward... January 21, 2008... 5am... Happy Anniversary Daniel... double pink lines!

Hola Dr. Perry "I think I might be pregnant"... He ran the.same.exact.tests. as the Arizona OB. "Sarah, you need to be put on blood thinners. You have Antiphospholipid Antibody Syndrome. Here... I made you a copy from my medical dictionary book telling you what it is". (I should call that Arizona OB and thank him for trying to murder me... birth control is very widely known for creating blood clots... something I only NOW know APS does in excess in my body). I have to say that Dr. Perry DID address my other health issues, but they are very mild and under management so are a non-issue.

There are two main classifications of the antiphospholipid antibody syndrome. If the patient has an underlying autoimmune disorder, such as systemic lupus erythematosus, the patient is said to have secondary antiphospholipid antibody syndrome. If the patient has no known underlying autoimmune disorder, it is termed primary antiphospholipid antibody syndrome…. AHHHH LUPUS!!! Which brings me back to high school and that stupid vanity pill…

81mg a day of low dose aspirin gave me the opportunity to carry a pregnancy to term...Resulting in my healthy baby boy. I am very lucky that I did not need a more extensive anticoagulant therapy. I have read about women who have to give themselves daily blood thinner injections.

For years now I have googled the shiz-nit out of Antiphospholipid Antibody Syndrome... every time I Google it I find and learn so much more. It started out with one or two medical journals with information I didn't understand... I posted my experience in yahoo answers, hoping to find someone with similar experiences. A year or so later I got an IM from a mom in Nevada telling me about her “Lupus like reaction… and need of blood thinners”… today I found a whole website WITH A YOU TUBE CHANNEL!

You all must think I am so lame... but thinking you are one of two medical journal entries leaves you feeling very much a freak... 1 in 3,348,627,020! But today I found a You Tube channel... I have to tell you... I cried... like a nerd! A You Tube channel people… I can’t say it enough times!


  1. great info! I too have drug induced Lupus, 3 years out. How long has it been for you? Do you still have symptoms?

    -Ashton VA

  2. Also do you still have symptoms of the Lupus? If so, how do you manage the paim medication? Do you have any liver problems because of the medication? Thanks

    -Ashton VA

  3. Thank you for joining and posting on the APS forum. If you are comfortable sharing, what is your experience with injection anticoagulants? Can you explain why you did or did not need them?

  4. So the low dose asprin was the key to a full term pregnancy? I have heard of m/c into the 20th week. I have also heard that the pregnancy ends up being pre term at 25 weeks because of the APS.

    I am on levonix (sp?). Thank you for the blog!

  5. Its been over 10 years sense stopping the Minocycline. I used most Ibuprofen for the pain back then. The pain diminished and now I only get stiff joints when the weather changes... like old people do! Now I only use Tylenol for any aches and pain... sometimes Vicodin for migraines and such. I stay away from NSAID's because of how they stick to the blood cells and block the low dose aspirin. Also I do get sore kidneys after I take Vicodin. I am not sure why.

    I have been fortunate with not needing injection anticoagulants on a regular basis. Last summer I ended up in the ER with stroke like symptoms... I am in my 20's and they thought I was having a stroke! Lame... but that is my reality. Turns out it was just restricted blood flow in my neck from a falling plywood clown injury many years ago.(talk about dark humor)... anyways... because of the restricted blood flow they were worried about a blood clot. So I had several heparin injections following that.

    Low dose aspirin the whole pregnancy (daily for the rest of my life) and progesterone suppositories (not an issue because of Lupus or APS)for 20 weeks or so. I have naturally very low progesterone even when not pregnant. Makes for many many anovulatory cycles. Provera is really good for correcting that :)
    My OB was very positive the whole pregnancy. After 8 weeks he was more than certain things were just gonna be peachy. I was freaked out the ENTIRE time. After 35 weeks I was done and ready to do my own c-section. I have not read much on pre-term because of APS... you can be sure I am Googleing that next!
    I have not heard of Lovenox before yesterday. I hope all works out for you KT.

  6. Oh, another thing that has stayed the same even after the pain vanished, is crooked fingers. My fingers are super twisted because of the Lupus I guess... It is the one thing I am most self conscious about.

  7.'s amazing what drug companies get away with putting on the market. Maybe you should look into seeing if there is a class action law suit. I know there is no amount of money in the world that justifies what you've been through, but damn!
    There is no way anyone can justify trying to cure one thing and inadvertently causing something much worse that results in the complications you've had.

  8. Glad you found the APSFA through You Tube. Come and join us on our support forum.

  9. If I didn't have so much work to do right now, I think I might sit here and read just about every post on your blog. Every single one I have read so far has spoken peace to my heart and soul- I'm not crazy! Other women have these same emotions. Thank you so much for your honesty and being willing to share. I swear, I have to close your blog and get to work!