Monday, October 1, 2012

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:
Hot Feelings/low-grade fever
Flu-like Aches*
Abdominal Pain*
Minimal joint pain*
Minimal eye burning/dryness
* - Still occurring


At October 2, 2012 at 3:09 AM , Anonymous Anonymous said...

This is very bad and I am deeply grateful that you would record your experience here.
We didn't get any hint from the Norweign research that patients could have these severe reactions.
Here in the UK we don't get your current level of medical support and we are left to suffer in our homes. There would be no help or understanding from, for example, a hospital. We would be on our own, meaning that it's not going to be possible for us to get the treatment from clinics abroad.
Any clinical trial in the UK is going to have to provide a lot of support that the NHS doesn't currently do.
I'm so sorry to hear that this is happening to you. It sounds awful and on top of your existing symptoms.
Hope that this is temporary and it clears up soon.

At October 2, 2012 at 9:48 AM , Blogger Dsdmom said...

Thank you for your kind words. I don't think this is very bad per se but definitely frustrating and uncomfortable. If the drs were finding serious things wrong with all of their tests then I would think THAT would be bad. All I can do is go forward and hope for the best. I, too, hope this is temporary and clears up soon :) and I'm sorry that treatment in the UK seems so difficult.

At October 3, 2012 at 5:24 AM , Anonymous Anonymous said...

I have just heard the Norwegian doctor, who is responsible for the rituximab trial, say that for some
of the patients the symptoms got worse the first couple of weeks after infusion. Maybe that's what's happening to you. But he also said that the side affects their patients had experienced were mild... Hopefully you will get better soon!
About those blisters. Are they small, with clear fluid and itches a little? I've had that too (I also have ME). In my case they occurs when I have eaten something I react too, or when I have severe abdominal pain. Maybe that's the case with you to?
Greetings from Norway

At October 3, 2012 at 10:10 AM , Blogger Dsdmom said...

Thank you so much for sharing that information. I definitely get worse for the few weeks following the infusion. My husband thinks I have handled the second round better than the first and I think he is right although part of that is probably knowing what to expect. I just wish we had more information from more patients. It is difficult to know what the drs mean about "mild" symptoms since drs generally do not consider anything severe unless it requires hospitalization. In my case no tests have shown anything to really be wrong so would my symptoms be considered mild even though they caused a considerable degree of pain?

As far as the blisters on my hands are concerned, the pathology indicated they were most consistent with pernio, or chilblains. I get these on my toes in the winter but have never had them on my hands. The best we can figure is that the rituxan caused some sort of vascular changes in my hands since I was having temperature extremes in them and that contributed. We wil see if I end up with more.

At October 3, 2012 at 10:11 AM , Blogger Dsdmom said...

I am intrigued, however, about how your blisters on your hands occur with stomach pain. And from ingesting something your body doesn't care for. How long do your blisters stay around for?


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