Tuesday, August 28, 2012

End of week 2 - delay in round 2 of treatment

This has been a difficult week. Last week I started experiencing burning eyes. On Friday morning I had a bump on my lip and I was unsure if it was a cold sore or not. I have never had one before but knew that my immune system was now pretty compromised because of the Rituxan so it was quite plausible that I could be experiencing one. I also knew that it should be treated before getting a second round. Friday evening I saw a dr. at urgent care who prescribed Valtrex. The Valtrex made me feel HORRIBLE. I immediately started having chills and was extremely fatigued and living in a depressed fog.

The next morning I spoke with my pcp who is out of state and she was upset that the dr. I had seen had not run any tests on my lip sore to see if it was indeed HSV. So I went back to the urgent care and saw another dr. who swabbed my lip and took some blood to check for antibodies to HSV 1 and 2. This Dr. also scared the crap out of me by mentioning Stevens Johnson Syndrome. No need to look it up - it's essentially a fatal horrible skin peeling off disease. I also at this point had a couple of new weird looking areas on my tongue. I had a geographic tongue going into Rituxan treatment but this was more.

I finished my valtrex on Saturday and really felt horrible while taking it. I also started having sensations of burning skin on my face, tops of my hands and feet. I was positive that if I looked at my skin it would show huge sheets of skin just peeling off. But it didn't...

Sunday morning I woke up with a temp and I never have temps because of being on prednisone. It was not super high and I spoke with my pcp and we decided to keep me out of the ER if possible due to all the germs there. I was having loose bowel movements due to the valtrex and just feeling really sick and scared. That stupid dr. had put in my head that I was going to go on to develop a fatal skin disease. Thanks. So my pcp's concern was the mucocutaneous reactions (burning eyes, sore on lip & new ulcer areas on my tongue plus more irritation vaginally) and how this related to Rituxan and whether I should do more. As the day went on I started feeling worse and started having shaking chills. I was so fatigued that breathing was an effort. We decided at that point that I needed to be checked out so I did end up going to the ER.

My blood work was clear for any massive infections and my echo was fantastic (they were checking for endocarditis). Some zofran, saline & tylenol was all I had there and they were chalking this fever up to a virus. Thing is, nobody else in my house is sick. But i was sent home and felt slightly better knowing my bloodwork was good and the ER doc didn't think I was developing Steven Johnsons.

Yesterday morning (monday) we were supposed to fly out for my next round of treatment - this was obviously put on hold due to the fever and feeling horrible. I even vomited when I woke up. My prescribing dr. was not concerned about pushing it out a couple of weeks. In fact I also was able to talk to someone who works for Genentech this weekend and he told me that one infusion knocks out 90-95% of B cells and that the 2-week interval is not something that was ever set in stone with scientific reasoning - that there was wiggle room.

I was able to see my CFS doc yesterday and have her lay eyes on me to see what she thought of these reactions. She was not overly concerned with what is going on at the moment but we decided to wait a week, meet again and reassess. She said that we should probably expect a bunch of weird things to pop up for me along the way and we just need to keep an eye on them. We've documented my issues with pictures so we can compare as we go. As a side note, there is no telling whether or not what I had on my lip was a cold sore or not because it is now gone. I did find out that I have antibodies to HSV 1 indicating a previous infection so I could theoretically develop a cold sore again. I won't take Valtrex though. I know many people have no problem with it - I continue to have diarrhea and just don't feel right since I took it. Hoping that improves.

I continue to have weird aches and pains.  For instance maybe a shooting pain in my finger. Or some neuropathic pain in my fingers. I'm very tired and dizzy.  My temp is more normal although it is very hot here today and I just feel hot and miserable from that. Today brings leg pain. More muscular than joint I think but annoying nonetheless. My tongue is feeling better even than yesterday - less burning pain.

So for now the plan is to meet with a dermatologist next week so we have an expert set of eyes on board in case I do develop anything else and this isn't viral, then to meet with my CFS doc again and reassess where we are at and when to get the next treatment. I do have one scheduled with the infusion center but can always change it

As a side note, I just checked online and insurance has denied my first round. I had expected that - they tend to do that and even did it with my ivig. however, this is a HELL of a lot more expensive than ivig. Round 1 was billed at $29k with the insurance rate at $22k. I am praying that all that gets worked out and that the hospital lets me get the 2nd round without that taken care of.

I'm not thinking super clearly today but if I think of anything else I will add it...

Oh I know. So after I saw my cfs doc yesterday I tracked down the idiot dr who scared the crap out of me on saturday and told him that he scared me and that he had to either tell me why he thought that was true or tell me that it wasn't. He apologized for thinking out loud...and that no, I didn't have that complication. My pcp was really ticked that he was such an idiot. At least I know to avoid him in the future.

ETA: More of a note for myself as I will be using this blog as reference in the future. This afternoon my hand and lower arm joint/muscle pain is picking up. 800 mg of advil not helping. Will see where this goes in a couple days but hopefully will get better. It's painful to do anything and feels like my arms are almost cramping. 


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