Update (long)

Friday was my "first" 6 week appointment at MERSI with Dr. Foster after starting treatment for Ocular Cicatricial Pemphigoid with Methotrexate. Friday morning, I was full of anxiety-I was downright scared. I knew I was having major side effects, and was really scared of what might happen-changing meds was scary because of the unknown, yet keeping the same med was scary because of the known. I started crying while walking towards the building. Once I got myself together and got inside, I had my vision screening and then labs. My counts all went down a bit, but are still within normal limits.

Then I saw Dr. Foster. He asked how I was doing on the medication. I told him that it started with 1.5 days of fatigue & nausea, but the days kept increasing and I was now at 3-4 days of extreme fatigue and off & on nausea. He immediately told me this was not the medication for me. I told him that I was concerned because he had said that Methotrexate was the "easiest" medication to take since I have to be treated for two years. He said that he would like to try a new medication, Cellcept, which is the same "type" of medication, but since everyone reacts differently, he is hoping that I won't have the same side effects. The difference is that with the Methotrexate, I only took it once a week (6 pills every Saturday night). With the Cellcept, I have to take 2 tablets (2000 mg) in the morning on an empty stomach and 2 tablets (2000 mg) before bed on an empty stomach EVERY DAY. Timing is crucial for this medication-particularly in avoiding side effects. I can not eat for at least one hour after taking and at least two hours prior to taking and need to space it by approximately twelve hours. He also gave me a prescription for some anti-nausea medication, Zofran, if needed. If this medication doesn't work, the next step would be infusions-weekly for eight weeks and then monthly for the duration. I really, really, really want to avoid infusions, so I'm hoping the Cellcept is the one.

After the appointment, I was still scared, but I had a plan and figured there wasn't much I could do about it, so I would take it as it comes.We went to lunch and then headed home. We ordered Thai takeout for dinner, and watched a couple of shows and went to bed. I slept like a log. Saturday morning, I woke up and took my first dose of Cellcept. I felt good all day. We went out for brunch and in the meantime, my mother called and said that Maya was sick-she had gotten up in the night and was vomiting. She did not want to come home, so my mother said they were laying low for the day and we would stay in touch. After brunch, we decided to go to Home Depot to order new granite countertops!!!! (different post for a different day!) We were back & forth to Home Depot a couple of times. At this point it was around 7:00 pm and my mother called saying that Suri wanted to come home. Maya was still not feeling well, but had not vomited again. We told her we would come get them. We decided to have dinner first, so we stopped at one of our favorite Thai places. I had a chicken dumpling and some broth and then felt extremely full...as in, if I ate another bite I would be sick. I asked the waiter to pack my entree up to go. We went to my parents and picked up the girls.

When we got home, I was exhausted and went right to bed (after taking my second dose of Cellcept). Anand asked if I needed anything and at that point, I was very nauseous. I fell asleep and woke up at 1:00am and started vomiting. I went back to bed and got up in the morning still feeling very nauseous and at that point (sorry, TMI) had diarrhea really bad. I thought for sure it was the medication. Anand thought maybe since Maya was sick that I had a virus, but since I had just started the new medication I assumed it was that. I slept all day, didn't eat a thing except a couple of popsicles and could hardly drink water. I did still take the medication both morning & night. I went to bed Sunday night and slept all night. Monday morning when I woke up, I felt better. I felt very weak and sore from lying down so much, but otherwise felt much better-no nausea and no vomiting. So, at this point, I do think I did have some sort of virus (with really horrible timing!) since I feel better now.

Maybe this medication is the right one for me? I really hope so...