Saturday, October 13, 2012

A crash and a Dr. appt

So I crashed from my bike ride. Hard. I am sure I overdid it - my husband seems to think we were out there for 25 minutes while I thought it was closer to 15 minutes. Thursday night I was slightly sore, especially my legs and sort of dizzy but not horrible. On Friday I was exhausted but went to my CFS doc in the morning, had to go shopping for a baby gift and was low on blood sugar so ate some crap while I was shopping, then had about 45minutes to nap and then had another dr. appt. I was really really tired but wanted to take my daughter to a festival at school last night so ended up going and being on my feet for about an hour. My legs started to burn and that wonderful feeling of horrible flu aches came rushing back. I was in bed relatively early but woken in the middle of the night by my daughter and a migraine and just feeling so horrible from my aches and pains. I couldn't go to her last soccer game this morning knowing I am now in a full on crash.

I did see my chiropractor this morning and we generally use low level laser pretty liberally on me - in some ways I'm her guinea pig but it's great because the laser can be nothing short of a miracle sometimes. Today we decided to just use it along my spine to see if that calmed down nerves for the rest of my body. I have to say my pain levels have definitely decreased since my appt with her - of course did nothing for the fatigue and rest of PEM symptoms but I'll take any improvement I can get.

I know it will take me a good week (if I'm lucky not longer) to get through this and I'm mad, sad, frustrated. I'm sure many of you are familiar with these feelings, both physically and emotionally. We are supposed to leave town for a few days on Thursday and I want to be able to function. Of course this week I have so much to do including getting a new license, more dr appts and then of course packing. I've pretty much resigned myself to bed for today and tomorrow and hope to see some improvement but I know really it's just going to take time.

As I mentioned above I met with my CFS dr Friday morning. We talked about my post-infusion symptoms and what my plan should be from here. Let me say again that my CFS doc is not the one prescribing the Rituxan but is helping me through this. Originally I gave my prescribing dr. the protocol from the new Norwegian study which is for infusions week 1, week 3, then month 3, 6, 10 and 15. My CFS doc recently had another meeting with one of the Norwegian docs and again it was reiterated that responses were not seen until 5 months. We discussed how it might make sense to just not get the infusion @ 3 months and wait and see what happens around 5 months then can make a decision about the 6 month treatment.

The thing is, apparently there is data showing a clear inverse relationship between B-cell levels and clinical responses. So as b-cells come back, so do symptoms. Which means that this could be a lifelong commitment to Rituxan or something of the sort to keep b-cells or autoantibodies at bay. If that is the case, it is worrisome to me thinking about the # of infusions long-term as chances for serious side effects (PML) increase. For that reason I was thinking about not doing the 3 month infusion and then just repeating at 6 months like in MS or RA. However, upon reading about the protocols for these other autoimmune conditions, I realized that they do 2 infusions again at 6 months. So technically it's the same amount of infusions - and to be honest I don't really want to do the 2 infusions close together again as they were difficult. Of course it's possible that it might be easier next time, particularly if I am feeling better by then.

I have been wondering why the Norwegians have decided to try the protocol they chose, particularly because it seems very unique. That is, there's a definite protocol for lymphoma patients and when it comes to autoimmune conditions they all pretty much seem pretty similar; 2 infusions, 2 weeks apart, repeated at 6 months or as long as the patient's markers suggest. Or sometimes they do once weekly for 4 weeks, which is more similar to lymphoma's protocol. Of course we don't have biomarkers yet. But why the infusion at 3 months, then 3 months later? My CFS doc didn't have the answer but hypothesized that maybe they were trying to clamp down on the B-cell population anytime it reared its head and maybe to permanently stop them from coming back. But if that were the case why wouldn't they do that with MS or RA or Wegener's?

The overwhelming takeaway from my appt is that nobody knows. About any of this. There are guesses being made and that's great, but this is completely experimental. There is no 'right' protocol yet. I'm clearly not a responder yet (as evidenced by my oh-so-fun recent crash) and only hope that I will be. But what is the right way to go about it? I don't know. My CFS doc doesn't know. I will be calling my prescribing doc to discuss his thoughts but my guess is that he doesn't know.

This is complicated. I guess nobody ever said it was going to be easy but the reality is that any of us trying Rituxan right now are really guinea pigs. I will most certainly continue to hope for the best but now have a decision to make as far as when to do my next round.

Oh and for anybody interested, I haven't had any more 'incidents' at night :) Seems to have been a one time occurrence. I told my CFS doc about and their thought was that my bladder could have been inflamed and that caused the discomfort I was feeling as well. Inflamed from what? Probably Rituxan :) Seems to have caused all sorts of inflammatory responses in me, so why not???


At October 15, 2012 at 12:14 PM , Anonymous Anonymous said...

Gosh, it's quite a roller coaster isn't it. I wonder if the Norwegian protocol is so unique to them because they seem to have done more Rituxin trials then elsewhere.
I hope you are a responder in the end. it's just such a long and unknown process.
I am not sure Rituxin or Ampligen will ever make it to the UK, but I hope that as more patients elsewhere get treatment, more will be learned for the rest of us.
So, thank you for being brave enough to step into the unknown - and for telling your story.

At October 21, 2012 at 1:23 AM , Blogger Fred said...

Hopefully the rituximab hot spine and neck are good signs!!!

At November 3, 2012 at 12:51 PM , Anonymous Anonymous said...

The toothpain , headaches and vomiting were my 3 hallmark problems when i was in the ICU for acute hypercalcemia...

Just saying. You've got 2 out of 3. Perhaps it can't hurt to get your calcium levels tested. Just to be safe.


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