Doctors and Lupus and Transfusions, Oh My.

I last wrote here in December.  I had tried to make a Rheumatologist appointment in October...the first time they could see me was February 24th, because doctor's offices make it so difficult to be seen by a specialist.  On March 14th, I was diagnosed with Drug-Induced Lupus.  The Humira I had been injecting was acting like poison in my body.  I had symptoms of this for more than six months.  In fact, when I first saw my primary care doctor in September, we had thought it could be possibly lupus.  Dermatologist and Gastroenterologist insisted it was not from the Humira, so I kept injecting myself with poison.  The pain got worse and worse.  I couldn't open things with my hands, I couldn't walk up the two steps onto the bus without assistance from the bus driver.  I lived in constant pain.  I can't take over the counter pain-killers, because they destroy my stomach and cause significant bleeding in my colon.

My Gastroenterologist told me he'd never heard of Drug-Induced Lupus from Humira.  He insisted on more tests to see if I had developed antibodies to the Humira and to check the Humira levels in my system.

The Rheumatologist gave me a steroid shot to treat the lupus.  My body reacted poorly.  I got really sick with a horrible pain in my back.  I couldn't stand up straight.  The pain took my breath away.  I went to Immediate Care, where they diagnosed me with a bad kidney infection.  Two days later, I ended up in the emergency room after literally collapsing in pain in the lobby of my apartment.  Doctors there continued to diagnose me with a kidney infection, gave me some fluids and sent me home with stronger antibiotics.  Spent the next week on the couch with a heating pad, drinking my body weight in fluids and watching Veronica Mars.  My Primary Care Doctor got the reports from Immediate Care and the ER, realized that none of the cultures developed anything so I did NOT have an infection.  She rushed me to imaging to make sure I didn't have a pulmonary embolism (blood clot in the lungs) and ran some more tests.  For a month, I could barely walk, stand up straight, or breathe.  My theory is that it was all from the steroid shot and the lupus.  My Rheumatologist would not treat my pain, or even take my pain seriously as I sobbed in their office.  They told me to follow up with the Gastro and to come back in October.

I was prescribed a week of oral steroids and physical therapy by my Primary Care Doc.  The steroids allowed me to feel perfect during my trip to NYC.  I was able to walk more than 6 miles a day, which sounds like nothing for someone as active as I typically am, but I honestly at the time, I could hardly walk the half mile to my office.  After the oral steroids ran out, the pain and stiffness came back.  Over the last two months of PT, I have relearned to use, stretch and strengthen my muscles.  I go twice a week to PT, and do the exercises/stretches three times a day.  It's the most diligent I have ever been with a workout regimen.  I'm so thankful that after losing a full month of my life due to pain in April, I can finally move properly again for the most part.

In May, the Gastroenterologist emailed me with "good news" that my Humira levels were low so I could go back on Humira but needed to switch from once a month to twice a month.  I immediately started looking for a new Gastroenterologist.  Again, it's so hard to get an appointment as a new patient, which is a disgusting part of our medical system.  I refused to believe that going back on Humira was an option.  I needed a second opinion.

From March until July, my digestive system has been completely untreated.  The only good news to me was that as the Humira got out of my system, the ulcerative colitis symptoms began to reappear.  It made me feel good to feel bad, since at least the Humira had been treating the ulcerative colitis, so even if I had all these problems, at least I could hold on to that fact.  As the rest of my body has healed, my colon has begun to flare...reminding me that yes, you do have this disease in your gut, you do not have a normal digestive system.

The lupus symptoms have slowly improved as the Humira has gotten out of my system.  It takes at least 3 to 5 months for it to really leave your body completely, and I was on it for almost three years.  My feet and knees no longer ache in pain when I walk.  My hair has begun to grow back..it's weird to get excited about things like maybe shaving your legs.  I honestly had no leg hair at all....baby smooth legs for months.  But I had bald spots on my scalp, and every new hair is a chance that I won't have to start wearing wigs.  My head itches as I can feel the new hairs poking through my scalp.  It's the best itchy feeling I've ever felt in my life.   I still have stiffness in my fingers and wrists, but hopefully it will continue to improve.

I saw the new Gastro last week.  She seems nice.  She will not put me back on Humira, and believes I did indeed have Drug-Induced Lupus.  She wants me to start on a new drug, Entyvio.  She gave me oral steroids to hold me over in the meantime, which I'm already so thankful for.  Anyone who has lived with symptoms knows what a relief it can be to treat them.  I'm a little scared about the Entyvio.  It's the kind of medicine that you have to go to a transfusion center and get injected via an IV.  It will start with one transfusion, then two weeks later, than four weeks later, than six weeks, then hopefully every eight weeks.  Cross your fingers my insurance approval coverage of this and that it doesn't cost too much.  I've already spent more than $3,500 out of pocket on medical expenses in 2017 alone.

I'm scared to start on another biologic, but also excited to maybe feel normal again.  I'm scared of all the millions of side effects that come from these medicines.  I'm scared that they'll have trouble getting veins to actually do the transfusion and I'll have to get a port.  I'm scared that the medicine won't work.  I'm scared that I'll get another scary side effect.  But I'm hopeful as well. Hopeful that maybe I'll get another few years of relief.  The Humira, for all the issues I've had this past year, it did give me two full years of feeling great.  Hopeful that maybe my colon will someday stop being an issue because maybe we'll find a cure.  Hopeful that maybe someday we'll have better health care in this country, that years of fighting doctors and insurance and drug companies will some day be a thing of the past.

As most of you know, I hate writing about this kind of stuff.  I am an extremely positive person, I hate admitting that I have anything wrong with me.  I refuse to let it hold me back.  This past year has challenged me in ways I'm still trying to figure out.  My health struggles have just been a part of the emotional burden I've been holding on to this year.  But it's all welling up inside of me, making me stronger, and making me better suited to stand up for all the things I believe in, to keep fighting the good fight.   I'm thankful to you, whoever you may be, for reading this, for listening to me, for putting up with me, and for supporting me in some way.  And to my close friends who listen to me complain all the time, you know I'd be lost without you!!