Wednesday, August 22, 2012

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!


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