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???

Week 8 - and a bike ride!

OK, so not a real bike ride, but damn close enough! Someone recently posted about a motor for a bike called the "Hill Topper." Essentially it is a motor attached to a front wheel that you just switch out on your own bike. See here: http://www.electric-bike-kit.com/index.aspx

I finally ordered one so that I could try to join my husband and daughter out on the bike path. I used to bike all the time before I was sick and always look longingly at the people on the paths. Anyway, it finally arrived and we had it installed and I picked it up this evening. So off we went for a short ride - all I had to do was push a button near my brake and the motor kicks in. The button is in a slightly awkward position but I imagine most people use this product to HELP them bike - not to use continuously. But I have to say it was pretty cool - I had to restrain myself from wanting to pedal fully knowing that I would regret it very much. I really did very minimal pedaling and we were on the path for maybe 15 minutes but my legs were very sore afterwards. I worry how the muscles will recover. I think the worst part was the soreness in my neck and shoulders from holding myself up. I'm worried about my recovery since I so badly want to be able to enjoy this with my family. One of the things I really liked about this was that I did not feel 'disabled' or different on the bike path. the motor is quiet enough and the whole set up is very discreet. But we shall see how things pan out over the next couple of days and if I can go again.

So am I better? No, no better than when I started Rituxan but finally I am feeling closer to my baseline again. This last week has brought less feverish feelings which is nice. Someone posted on my last blog entry that they heard one of the Norwegian oncologists say that some of their patients experiencing worsening symptoms for the first couple of weeks following infusions. I would say it takes me a good 2.5 weeks to start feeling 'normal' again. Those first couple of weeks are very uncomfortable for me.

My stomach pain has really let up - I am keeping up with miralax and keeping things moving. I'm still taking reflux meds but have cut back on the dosage and am getting by. I spoke w/ one of my docs about my symptoms and she confirmed that from a physician's view point, my side effects would still be considered "mild". So even though I was having excruciating stomach pain, since nothing was technically wrong by their tests, this is still 'mild.' Good to know :)

I find that I am very tired - more so than before Rituxan I think. The first couple of weeks post-infusion my PEM was much quicker to come on and more intense. I am needing mandatory naps every day - 2 hours doesn't seem like quite enough but I don't have more time than that with having to get my daughter from school and activities, etc.

In the spirit of full disclosure, I will share something else that happened this week, as embarrassing as it is. I am thinking (and hoping) that it has more to do with a very deep sleep than anything actually wrong, but the other night I wet my bed. Not just a little, but an emptying of my entire bladder, practically ruining my mattress. How horrible to have to wake my husband up at 3am to tell him that I wet the bed - he was quite confused, thinking I meant our daughter had wet her bed! I was mortified but in my dream I was actually in the bathroom and guess I just couldn't come to in time. The following day my bladder was very uncomfortable - we ran a urine test to see if I had an infection but nope. I was afraid to go to sleep last night and slept on a towel but I made it through :) Today my bladder felt slightly less irritated. Hoping it continues to get better.

Tomorrow I meet w/ my CFS dr and will discuss my next round. If I'm being honest, if you were to ask me if I would do another round in the 2 weeks following an infusion I would say "I don't think so!" But once I get through that, I am ready again. I'm back at my 'normal' level of prednisone again after the big bump for the last infusion. It's not easy coming down and I have to think about trying to come down further again soon.

I know I am still early in the process but am praying that I will be a responder and that some day I can go on a bike ride without a motor.

Edited To Add: The other thing I have been experiencing is worse headaches - in frequency and type. Headaches have been a huge problem for me throughout my illness but I feel like I have gotten them under control somewhat. But I've had much worse headaches this past week - requiring imitrex.

Recovery from Round 2 - week 6 & 7

The longer I have put off writing this the more I don't want to - really because it is longer and maybe more boring. But I need to get this in writing at least for myself. I received treatment almost two weeks ago (Tuesday) and flew home Wednesday evening. My husband had to leave town for work on Thursday which made for a difficult weekend just because I was then wholly responsible for my daughter. Thankfully I have some great friends who helped out with some drop off/pick up and play dates to give me a bit of time to myself.

On Friday the dermatologist squeezed me in which was super nice of him so that he could look at the small blisters on my fingers. He decided to do a biopsy as a worry could be vasculitis - and if it was, then was it systemic as well? He also had me do a urine culture to check for signs of vasculitis systemically. I was told results would take about a week and made a follow up appointment with him for the next Thursday.

Saturday during the day I had weird sensations at various times - like a stab here and there or an area of my skin felt like it was on fire (although much less so than the first time around). Saturday night though was not pleasant as I did not sleep due to being extremely hot, feeling flu-like aches, having a low-grade fever and intense nausea. This happened to me almost 2 weeks after my first round and now it was happening less than 1 week after the second. on Sunday I felt really ill and had very itchy palms. My temp stayed slightly elevated but not by much for a few days.

But on Monday my abdominal pain became unbearable. Particularly when I tried to eat anything - I was sobbing. I decided to go back to the ER (not my first choice) due to the level of pain and talking to my dermatologist's office about the possibility of a systemic vasculitis affecting the gi tract. They agreed I needed to be checked out and were trying to rush the skin biopsy results but I knew they wouldn't be done that day. I went to a different ER this time (mainly because that is where the biopsy was pending and they could easily connect w/ my dermatologist if need be) and we decided we needed to do a CT scan at this point. Again, not my first choice since I've had several and know the radiation is not a good thing but when I was in that much pain and couldn't eat I didn't have much of a choice. So they had me drink some contrast dye which was actually not bad at all - it was clearish, not thick, and mixed with crystal lite. The CT itself was clear so they could not give me any answers other than what it was NOT - as far as a surgical emergency or some horrible infection, etc. Also my blood markers were negative for anything indicating vasculitis. All good I suppose it was just hard knowing that I still did not have an answer and 'abdominal pain' is listed as a side effect of rituxan for up to 14% of patients, so is this all I had to go on?

I took a pain pill Monday night with the hopes of sleeping but the staff at the ER did not inform me that the contrast dye would give me diarrhea. Not just a little diarrhea. Like I was preparing for a colonoscopy diarrhea. So I was up all night long with that and continued all the next day - to the point where even drinking gatorade did not help me because it would immediately come out as diarrhea and had no time to be absorbed into my system. One interesting thing to note is that my pain lessened significantly after the diarrhea - like getting things moving helped immensely. By Tuesday evening however I was very dizzy from being so dehydrated and went to get some fluids at the local ER where I go occasionally for saline infusions. They ran some blood work which for the most part looked fine but did show an elevated WBC. I felt like I was coming down with my daughter's cold so maybe that was the issue?

But Wed night I was super hot again - alternating with feeling freezing - had flu like aches and did not sleep again. Thursday night my stomach pain was ramping up again which again made eating and sleep difficult. I saw my dr. thursday evening and she drew some new labs - my WBC had come back down closer to normal so hopefully all is evening out there.

On Friday my stomach felt pretty good but I had very itchy palms and face. I took some benadryl and had a nice nap. I went out to dinner and felt horrible - like very bad PEM with lots of flu like aches. After dinner my stomach lit up - the gastritis was out of control and I felt like I could not take anything to get it under control. And i tried everything! What freaked me out a little is that Friday night was the same night that my stomach started hurting badly after my first infusion - as far as the time frame is concerned.

On Saturday I changed my meds slightly and took the ppi that I thought might help more but also gives me significant side effects such as extreme grogginess and depression. I took a big nap on Saturday but was otherwise just really out of it. On Sunday I woke up very early with pain in my stomach. Went to church and then had a large bout of nausea with dry heaves. Went on an outing with my family and pretty much felt out of it but wanted to do something other than sit inside on a beautiful day. I slept ok but was up very early (5:30) with more flu like aches and some nausea. I did not take any zofran since I'm pretty sure that one of the issues I'm having has to do with motility and zofran will significantly slow that down. I did not take any zantac this morning since it really is making me groggy and I'm trying to not be completely out of it. I'm still pretty tired but in rereading this blog I see that one thing that is for sure suffering is my sleep right now. So it's not surprising I'm tired.

I'd say that overall some side effects were definitely less than the first time. Such as skin burning - I had much more skin burning over a larger surface area after the first infusion. After the second infusion I had minor areas that burned for minutes if that. Also my eyes did bother me again after the second round but no where near the burning and dryness of the first time. I just used more drops and seem fine.

I continue to have abdominal pain and don't fully know what it is from. The pain varies from gastritis/upper belly burning to lower abdominal pain and also the ever exciting upper right quadrant/wrapping around to the back pain. I believe I've mentioned before that before I ever started ivig I had what they believed to be motility issues that I treated with miralax and mestinon and a diet change. Maybe now that i'm not on ivig that is coming back and perhaps the rituxan is flaring something? I meet with my new pcp today and will be discussing a new gi consult with her. In the meantime I am adding back in miralax and low-dose mestinon to keep things moving. Good news is that I have not lost any more weight - maybe even gained 1/2 pound? It's just exhausting when you are uncomfortable all the time.

Oh and the pathology for the finger blister came back negative for vasculitis, which is very good news. Oddly enough it was most consistent with pernio, which I get on my toes in the winter. The only thing we could come up with was that we know that the rituxan did cause vascular changes in my hands as evidenced from the temperature changes and red fingertips and sweating that I had after my first round. And maybe those changes themselves caused a pernio like condition to occur. Just makes me wonder where else the rituxan is causing changes like this - gi system perhaps? Regardless, the dermatologist said that there are, of course, different inputs required, but from his perspective (the skin issues) there are no reasons why I should not get another round of Rituxan.

So, summary of after round 2:
Nausea*
Hot Feelings/low-grade fever
Flu-like Aches*
Abdominal Pain*
Minimal joint pain*
Minimal eye burning/dryness
Insomnia*
* - Still occurring