Second round/end of week 5

I had the second round of Rituxan yesterday and am on way home now. In some ways it was easier and some ways it was harder than the first round. My dr agreed to let me try 1/2 the dose of steroids this time which would be the equivalent of 40mg prednisone. I started with some saline, iv benadryl and the steroids. Once the rituxan started I dozed for a bit and waited to get that horrible throat itching that I had last time at the one hour mark. This time it didn't come. But I started having some itching without rash and the nurse said she could call for more Benadryl. I hesitated but then agreed. But this one was an iv push and it hit me HARD.

I immediately became very dizzy and overwhelmed with nausea. The nurse upped the rate and I started having trouble breathing. I waved the nurse down and we stopped the infusion so that I could regroup. 15 minutes later I was feeling a bit better and we restarted the infusion. I felt pretty good after this point so we continued increasing the speed up to my max of 350. I probably should have had more steroids to begin with but really didn't want the 80mg. When we got back to the hotel I was having more post infusion reactions than I did last time, such as chills, aches, breathing felt weird. So over the course of a few hours I took an extra 20mg prednisone, putting my total for the day at 60mg. 60mg is considered the normal "stress" dose so I guess that's not surprising that ultimately that's what I needed. I was also in a state of utter exhaustion when I got back to the hotel and I think the initial lower dose of steroids could have been a factor.

I am trying to keep a regular regiment of Tylenol and benadryl for the next couple of days. Even with that I did not sleep well - was awake at 5am and took more of both thinking they would help me sleep. They didn't, mainly because my stomach started bothering me a lot. I had had a decent day and thought maybe i was getting things under control but I was apparently mistaken. Maybe taking the meds on an empty stomach kicked up the acid but it was not fun. I finally decided to go to breakfast and have some oatmeal to sop up some acid. I slept a bit more after breakfast but it wasnt a great sleep. I felt extremely hot for a bit with some burning skin sensations randomly dispersed over my body.  The hotel was nice enough to give us a very late check out so we just headed to the airport from there.  My stomach is really uncomfortable at the moment.

I was talking to a friend of mine who is a nurse practitioner in an oncology office and she said it is very common for her patients to have abdominal issues and be on ppis during treatment. Again maybe my pain is rituxan related. Can only hope it lessens again. I'm also thinking this has to do with motility issues that I had before ivig.

Another weird thing that has happened that may or may not mean anything but I thought I would at least report it has to do with my hands. Before my second round I noticed a couple very small blisters on my right ring finger. They really hurt and are fluid filled. Again they are tiny. Today I noticed a couple more starting on other fingers. I will see the dermatologist when I can and get his thoughts on them because they are painful.

Looking forward to recovering at my own house soon.

Update 9/14/12

Stomach update: yesterday I tried 1/4 a 40mg nexium pill. It made me groggy and weirdly depressed again. Less so than a 40mg but still ruined my morning. My cfs dr suggested trying omeprazole and/or aciphex as long as I was trying things. She also said that before there were ppis they used the h2 blockers like Zantac. I already am doing 150mg Zantac 2/day but was told to go to 300mg 2/day. We also decided to get more serious about using carafate on a schedule. I went to the pharmacy and bought OTC prilosec and Prevacid. I picked up aciphex samples from gi office. Last night I started the increase dose of Zantac and tried 20mg Prilosec. I did pretty well with it although felt very groggy on waking today. This morning I did the same thing. I am definitely wiped out. Not sure if it's the drug or if I would just be wiped out anyway. I feel like the new meds are playing into this for sure  and I'm not thrilled about it but know I need to let my stomach heal. I also know they'd like me on twice the dose of ppi that I'm on now. Will just see how it goes.

Rituxan update: I met with my cfs dr yesterday and we decided to go ahead with round two. Although the gastritis was probably brought about by steroids and NSAIDs we think the scales may have been tipped by rituxan. So it is unknown if this will happen again but I'm praying it doesn't. I am scheduled for next Tuesday am. Of course I feel like I am jinxing it by even saying this since I seem to be the queen of canceling. Will just keep praying. We did run some more blood work to get a new baseline before the next round of treatment. We got results back today. My lipase was still slightly elevated although I have never had it tested prior to two weeks ago so who knows if I've had slightly elevated lipase for some time. If so I'd chalk it up to steroids. Creatinine very slightly elevated but dr isn't worried.

On a lighter note, I decided to take a bath today. Can't remember the last time I did that. Anyway while I was trying to relax one of my cats (not the kitten) fell into the tub. Chaos ensued and as I tried to help her out she shredded the palm of my right hand. Ok so maybe this isn't a lighter note since my hand is torn up and it is taking me forever to heal anything at this point so i am a bit nervous about nothing getting infected. That was the end of the relaxation anyway since I had to chase a soaking wet cat around the house. But at least now 3/4 of her is clean :)

EGD biopsy results back

Although I haven't seen the official report, I did talk to the medical assistant yesterday and heard that my biopsy results showed no h pylori, no cancer (always good to hear) but confirmed gastritis. I have had positive h pylori antibody tests indicating at least a past Infection. I've been on so many antibiotics this last year in particular that it not surprising to me that it was eradicated along the way. 
So the course the action sounds simple. Ppi's until healed. Of course nothing is that simple. I have been struggling with new ppi's this week which is very frustrating. We've settled back on protonix but 2xday now. Unfortunately that is also causing major side effects like immense fatigue/drowsiness, headache and depression. And overall just doesn't seem to work as well as the ones that gave me similar but maybe worse side effects (dexilant and nexium).  At this point I'm not sure what to do. I've tried dexilant at half dose since I realized everything I was given is at high doses but I still did very poorly with dizziness and extreme drowsiness plus horrible muscle pain. I've been given the option to try aciphex but have tried that in the past with bad results as well. Staying on protonix doesn't seem to be an option since it didn't work as well and gives me side effects.
I think I am most annoyed that I am so groggy from these pills. Not what I need. I'm trying to feel better in that regard right now. Sigh...
I've got a call in to my cfs Dr to discuss all this and see where to go from here. Thinking of trying nexium at half dose next to see if I can struggle by with that. Anybody have any insight?
I'd like to say this is not related to Rituxan but another patient I know of is having epigastric pain as well. However we have different lab results so who knows.

Update - end of week 3

Well we have made it to the end of week 3. I've had new symptoms arise and abate and yet then new ones come. Right now I'm dealing with a rough one which may or may not be related to Rituxan.  My doctors have decided to wait a bit longer before my next round and are not too concerned about the lack of having the infusions 2 weeks apart.

Last Tuesday afternoon I started having burning in my fingers and then toes. I thought maybe it was a neuropathy type thing. I have had neuropathy in the past but it was always controlled by ivig. Now that I am not receiving ivig I was unsure what my 'baseline' would be. But then my fingertips all turned red and a couple of them were very tender to touch. Next my entire hands became extremely hot and sweaty. I would watch sweat pour out of my fingertips. It was all very strange.

I was talking to my neighbor that evening and found out that she had experienced similar symptoms before. Where she started with red fingertips, then burning, sweating and very tender fingers. Next she had very tender tops of her fingernails which then turned yellow and detached from her nail bed. Medically this is called onycholysis. I pretty much progressed along these lines including the tops of my nails getting very sensitive. And then things let up...I was waiting for my nails to fall off but so far they haven't! A couple of doctors think this was just from vascular changes occurring...once again, thank you Rituxan.

All last week I didn't have much of an appetite and had diarrhea on and off which I attributed to the Valtrex from the prior weekend.  I didn't think too much of it but we went out to dinner Friday night with some friends and I really wanted to try and get some good food in me. I had gazpacho and steak. Before we even left the restaurant my stomach was killing me. By the time we got home I was in a ton of pain - it was very high, almost even under my rib cage. It felt like burning but also weird like maybe there was a lot of gas there? I chalked it up to the gazpacho being too spicy on my stomach that hadn't eaten much all week. However I did not sleep much and Saturday was not much better. I hardly ate and by the time I went to bed I was in tears. I was so tired but could not sleep due to pain.

We made the call just after midnight to go to the ER considering I wasn't going to sleep anyway. Ultrasound and abdominal xray were done. My lipase was slightly elevated and they told me I had possible pancreatitis with gastritis and/or an ulcer and that I needed to set up an EGD w/ a GI doc. Sunday and Monday were still very painful and eating or drinking anything was horrible so I just didn't. Of course Monday was a holiday so I had to wait until tuesday to call the GI office. They were completely booked and tried to figure out where to fit me in and whether or not I needed an office appt when the woman there told me that the quickest way to be seen would be to go back to the ER and ask for a GI consult since their drs were on call. She seemed confused why they hadn't done this the last time I was in the ER.

So off to the ER I went, and of course it just happened to be their busiest day of the year so far so I waited for hours to be seen. There must be some horrible stomach bug going around as well since there were people puking all around me. I did my best to steer clear..... The doctor I saw this time ran some updated bloodwork and then called the GI doc at my request. Because I was not puking blood they were not going to do an EGD emergently but were able to schedule me for the next day which was great considering I knew they were booked into October.

So yesterday morning (Wednesday) I first had an appt with my CFS doc to talk about all of this. We decided that the best course of action was to wait for the EGD results and then decide on Rituxan.

I was nervous about the EGD mainly because of the sedation - I don't do great with sedation.But they used propofol and I have found my new favorite drug! Mainly because it knocked me out and when I came to I had zero grogginess or drug hangover. No wonder Michael Jackson loved it for sleeping! The EGD showed gastritis but no ulcer. My h pylori antibody was positive so now I have to wait for the biopsies to come back before we know for sure if I need to treat that. All in all nobody is surprised about the gastritis considering I have been on steroids for years and this year had a ridiculous about of dental work done which meant I was on a pretty heavy regiment of motrin for a few months. The question is though did Rituxan play a role in this at all?

The GI's answer was no. But I have had other skin reactions to the Rituxan and since it can cause mucocutaneous reactions, at least one of my docs think it could be related. After all the lining of the stomach & the intestines are a mucous lining. GI prescribed a different ppi and an antispasmodic to take if needed and said if I'm no better in 4 weeks he would do a CT. I started the new ppi today but it made me extremely dizzy (not just a little bit) and short of breath so they are switching it to a new one. of course that one also requires prior authorization so I'm off to pick up some samples from the dr. while all of that is sorted out. I'll be interested to see if this solves all my abdominal pain issues since the pain started up top but I have pain in all sorts of places now. Last night I was actually hungry and strayed slightly from my banana and rice diet to have rice pasta. I ate quite a bit (or at least compared to what I had been eating) and was promptly greeted with a ton of nausea. Zofran helped but it was not a fun night for that reason.

I also know that there is another patient on Rituxan who is experiencing stomach issues and nausea. So maybe there is a link?

So where are we with Rituxan? At this point we are waiting to see how I do with the new ppi and waiting for the biopsies to come back. Then we can make a decision about when to do the next round.

As an aside, I also saw a dermatologist this week who has seen other patients on Rituxan. It was great seeing him because some of the weird things I've had come up were not the least bit surprising to him. For example the weird bruise like spot I developed on one of my fingers - he said usually people get a lot more and they come about 2 weeks after treatment (yes) and aren't dangerous but to keep an eye on them. He also was not surprised about my tongue - is is 'geographic tongue' but has some sore areas. He told me to come back if it happens again next time and if it's painful because he can help with that. The finger tip/nail issue didn't shock him but he doubted it was truly onycholysis. But even if it were he said I would be ok. All in all it was reassuring to have a doctor on board to go to who has seen this sort of thing before. The one thing he did find on me was a type of yeast on my back. I don't know if it's been there long or if it's something that is now growing more because of the Rituxan but he prescribed a wash for me to use for that.

Wish I had more wonderful exciting news to share but I do want to document all of this for anybody else who may experience something similar should they try Rituxan some day.

But to end with happier news... we had an addition to our family yesterday. 

My daughter is thrilled but our two other cats are more than a little angry. There's a lot of hissing going on in this house right now. Really not what I needed but it makes me happy to see my daughter so happy. Hopefully the other cats will get over it soon and not resort of peeing in inappropriate places!