July & August

When I returned to NH, I was still in pain. Great grand overshadowing life pain.  I went to see my PCP and she referred me to a rheumatologist.  I had numerous appointments with the rheumatologist which included what felt like thousands of pints of blood being taken for tests.  I was tested for everything…

SLE – Lupus – Negative

Drug Induced Lupus – Negative

Lyme Disease – Negative

Osteoarthritis – Negative

Rheumatoid Arthritis – Negative

Fibromyalgia – All markers were negative

Everything was negative.  And as the negatives piled up, my emotional stability wound down.  What was going on ? I mean, no one likes to go to the doctor, but that was overshadowed by the fact that no one could figure out why my joints were as bad as they were that they required opiates to deal with the pain. 

My rheumatologist really was, despite the negative test results, adamant that she felt that I had drug induced lupus from the Remicade.  Around that time, I had my next infusion, and the joint pain went away almost instantly.  I did a happy dance (no, literally, I danced!!!), but it didn’t last. And as a result of the Remicade getting rid of the joint pain, the rheumatologist was accepting that it wasn’t drug induced lupus, but the drug itself made me feel better, albeit only for a small amount of time.  About two weeks after the infusion, the pain was back.

During all of this, I had made the decision to get a GI up in Exeter, since going to my GI in Boston was tough to do when I had multiple appointments and when infusions had to be rescheduled. Luckily for me, the GI I chose at Exeter Hospital had done her residency with my GI in Boston so the co-doctoring they were going to be doing wasn’t going to be a big struggle.  So, soon after the pain came back, I went to see her.  She had me take an antibody test right before the previously mentioned infusion to see what the levels were. The results came about a week later, and indicated that prior to my infusion, there were 0 levels of Remicade in my blood.  This indicated to her, that I had built up antibodies to Remicade and that it no longer was working for me. So, we had to do something else. 

Humira. That was the something else. I had to self-inject myself every other Friday.  I was terrified but at the same time, I knew that if it worked, I would be happier and the injections would just become part of my everyday life.  I went to see her again a few weeks later, and we started the injections. The first time you get them, you get 4.  They did 2, I did 1 and then they did the 4^th.  It was hard to do. It’s very hard, mentally to wrap your mind around something that is going to hurt you and you know it’s going to hurt J. Now, as I previously mentioned in a past post, taking Remicade started relief almost instantly (by the next day) and I expected that with the Humira. I expected to wake up the next morning with no pain. Alas, that was not the case.  Two weeks later (still with joint pain) I took my next two shots and I did them at home.  Two weeks later, another shot, but only one.  When you start Humira, you have to uber dose yourself which is what the first six weeks entail and then you do one shot every other Friday. 

And then the next chapter began….