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. 

End of Week 1

I keep putting off writing this blog as things keep changing - or maybe I should say migrating? And my brain just doesn't seem to be working that well today. But I figured I should get going on this for all of you watching and waiting.

Yesterday marked one week since treatment. The week has had its ups and downs for sure. Since returning home Saturday I've had new bouts of pain and some sleep issues. I also have been trying to return my steroid levels to 'normal' which I'm sure is playing into how I'm feeling but I figured I would report what I can remember in the spirit of full disclosure. 

A few days ago I had some soreness in my calves which felt like I had worked out really hard. I assure you that I hadn't. I didn't think much of it but just noticed it because I hadn't felt pain like that in a long time. It only lasted about a day or so.

On Monday night I started having significant joint pain in my right hand, wrist and up my arm almost into my shoulder. I do have a torn ligament in this shoulder so never think much about that pain although I couldn't figure out what I had done to aggravate it. Again, no heavy lifting :) The joint pain also felt like weird cramping and it was enough to make sleep difficult that night.  I have had pain like this before - really in the last few months I had to get extensive dental work (9 root canals over 6 weeks - that's another story, but I can thank the steroids for that) and each time I had RCT done I would inevitably flare with some horrible joint pain for days afterwards. It took a while for my drs and I to figure out but the best we could conclude was that it was an immune response of some sort.  I thought this type of pain was behind me since it cleared up once I was done with dental work but apparently not.

On Tuesday the pain was pretty intense and also now included my left hand and wrist. I checked in with one of my docs who doesn't have a ton of experience w/ Rituxan but who did say that other biologics are known to cause serum-like sickness and it would probably clear up in a couple days. But that also it would probably mean that I would experience it with each subsequent round of treatment. I was happy to just hope that it would go away. Throughout the day the pain lessened but by bed time I took more motrin for increasing discomfort.

Today (Wed) the pain is much less - enough so that I can hope it was just some weird response I had.  However, I've got pain somewhere new which started last night. My left hip/glute hurts - this feels very muscular but as today wore on it has become more intense and I feel it somewhat on the right side too and caused some limping. Again, this is not 'normal' pain for me. Also having some muscular pain in my legs - thighs and calves. I saw a dr. today since my daughter had to be tested for strep and we thought it best to test me as well (we were both negative although I continue to have a sore throat it's probably viral). The Dr. did check out my left hip area that was in pain and pointed out that it was more soft tissue related than something else. At this point I am starting to chalk up these things to the Rituxan BUT I've been dropping on steroids and I suppose there is always the possibility that that is causing me pain. I've had pain before coming down on steroids but again, it has never been like this.

I mentioned sleep issues as well; it's hard to say but I'm about 95% sure it has been related to dropping on steroids. It always does that to me at first. Nothing some xanax couldn't help with.

Now I don't want to say this week was all bad. I had some interesting moments as well that I am really not sure what to make of. Before the new bouts of pain started I would have these moments of what I would describe as intense clarity. The first time it happened I thought I must be making it up but then it happened again. Almost like having a clear head (which I can't remember the last time this happened) where I felt 'normal'. The first couple times it may have lasted 10-30 seconds if that, but it was enough for me to feel really differently. On Monday I had a few hours of increased energy with the clear-er headedness. It did not last and I needed a big rest but it was sort of cool to feel. I wondered if this in itself could be related to steroids, but I have been dropping consistently which generally makes me feel worse, not better. Alas, I haven't had it again in a couple of days.

This afternoon I was wiped - I'm dropping the steroid as quickly as possible so know that's most likely the culprit (along with the intense annoyance I was feeling earlier today - I swear, my family is so amazingly patient with my steroid moods) but was unable to sleep because I couldn't help myself and finished off the amazingly good gluten-free caffeine laden brownies a friend had dropped off. Totally worth it though :)

The cough like sensation I reported on after treatment has pretty much disappeared. The sore throat had gotten much better but now is sore again.  The itching is gone as well - took a few days to clear up.  I have asked my dr. if we can use less steroids next time around but haven't heard back - I will do whatever I need to and if that means doing well with the infusion then so be it.

We are set to fly out again on Monday and treatment is scheduled for Tuesday.  At this point I'm keeping myself somewhat quarantined until then - my poor daughter is going to be bored silly but getting the second around is pretty important right now so it's time for tv and relaxation!

Rituxan round one

I had my first infusion of rituxan this week and am flying home for a week before returning for my second round. I was definitely nervous just because I did not know what to expect. I am accustomed to receiving ivig every month and know what that is going to do to my body. I know to expect a full day for the infusion and then two down days after while I recovered. But this was scary because of the unknown. As an aside, my doctors had me stop ivig while trying the rituxan.

On arrival to the infusion center I was told they did not have the orders from the doctor. A flurry of emails and faxes and two and half hours later I was ready to go. Prior to the infusion I received iv Benadryl and iv steroids. The nurse told me that I might feel some itching or flushing or my throat might scratch and to let her know when that was happening. The first hour was uneventful but then my face started itching a bit. Then my throat scratched so badly I wanted to swallow razor blades. Apparently it is from a histamine release and it did run its course as the nurse predicted. They may have kept me at that infusion rate for slightly longer but then raised my rate according to protocol. I started feeling a little funky at the end when the rate was at its maximum but by then it was over. At the very end I felt like I was developing a cough but that has yet to materialize into much. All in all the nurses said I handled the infusion very well. 

I did not sleep much that night probably due to the large dose of steroids I was given (the equivalent of 80mg prednisone) and did have a bit of nausea. Slight facial itching continued so I continued to take Benadryl through the following day as well. I did sleep a lot the day after the infusion.  I also continue to feel like I am developing a cough that is very annoying. My husband insists the nurse warned me of this as well but I thought she was speaking in context of the actual infusion and not something that would last. A google search of "rituxan cough" brings up several references to patients who developed really annoying coughs from the drug. I can only pray mine is just a minor irritation that will disappear soon. 

Overall the problems that I am having I believe are more related to the increase and drop in steroid levels than to the rituxan. And that is only because I am on chronic steroids and have terrible issues when my levels are screwed with. for the "normal" patient this one time jump in steroids should not be an issue. So here I am four days out from the infusion and I am really struggling to get my steroid levels back to my normal. My hope is to get back to "normal" before going through this again in a week and a half. My other option is to take less steroids next time and I'm toying with this idea but I will need to discuss with a few docs and see what consensus is. If it is allowing me to get the infusion without any major reactions I may just have to suck it up. It is just frustrating to say the least. 

Last thing I will say here is that several of my doctors are hopeful that the rituxan will eventually allow for me to decrease or even come off the steroids. At this point only time will tell. 

Some background

I developed cfs/me/dysautonomia suddenly at the end of 2006 after serious complications following the birth of my daughter. Prior to this I had it all: great job, extremely active -in fact any hobby I enjoyed had to do with being active. An avid biker, snowboarder, yogi, hiker, etc...I loved doing anything active. Falling ill (and not getting better) was not on my radar. My family and I struggled through the first few years unable to comprehend that I was not getting better. How did this happen? How could we fix it? Would my child ever know me as anything but sick?

Countless doctors (and unfortunately many friends and some family) wrote me off as having anxiety, nothing more. Finally I diagnosed myself as having dysautonomia and found a neurologist specializing in this. Eventually I came to the conclusion that I also fell under the dreaded cfs umbrella and saw Dr. Nancy Klimas. Under care of my neurologist I have been receiving ivig every 4 weeks for almost two years. Although not a cure by any means it has helped me. I believe that it has worked in its intended method; that is, it has helped the autonomic neuropathy. Which has helped blood pooling, orthoststic intolerance, gi issues.  It may help the fatigue slightly but it does nothing for PEM.

About a year ago we decided to give Ampligen a try but there was a problem with this idea. One doctor had put me on steroids a few years ago for a short taper and I have been unable to get off them. They are a horrible drug and the bane of my existence. Hemispherix required that I be off the steroids in order to take part of the clinical trial of ampligen. As I worked on that aspect, the Norwegian rituxan study was published. My family and I consulted several specialists and did not take this decision lightly. In the end, with the support of several of my doctors, we decided to give Rituxan a go. And here we are....