Oy vey.
Yeah, so the Rituxan was awful. It didn't make me feel better at all. Made me feel like I'd regressed, actually, as I was completely exhausted for the entire four weeks that I was receiving it, and made me nauseous days after my infusion.
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| Rituxan in June |
My pain was getting worse, and more widespread. My knees were aching, and my hips. I had trouble getting up from low chairs - my knees were just refusing to cooperate. Left foot was still my most painful, but there wasn't a day that I felt good. That's a really hard thing. I don't feel good. Like ever. I always feel run down and a bit under the weather. Seeing that there was no improvement, and my symptoms were getting worse, my doctor decided to switch my immune suppressant. I had been on Tacrolimus since my transplant, but she wanted me to try a low dosage of Sirolimus instead to see if we could suppress my immune system a bit more, to maybe try to give some relief from the constant pain and fatigue. She also asked if I was willing to give Jakafi another try, to see if it could help at all.
Fifteen days later, I made an emergency appointment to see my NP (also at UCLA) because I was having horrific headaches, and my nose wouldn't stop bleeding. My platelets had dropped to 10, my white cells were slightly over 1, and my ANC was less than 500. My counts had tanked. Hard. During the next two weeks I had to have two platelet infusions, and a shot of neupogen. She wanted me to have a shot of neupogen the first day that I saw her, but I refused, believing that I would recover quickly after switching back to Tacro. No such luck. And a mistake on my part. I suffered through a week of terrible aches and pains, and three extremely painful mouth sores. I agreed to the neupogen a week later when my counts had still not recovered, and started to begin to feel a little bit better. My nose stopped constantly bleeding, and my mouth sores started to heal. Counts slowly began to improve.
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| Platelets in August |
Still plagued with pain, they suggested a consult with Rheumatology. The rheumatologist told me that they had had some luck with patients with joint and muscle gvhd by trying IVIG. I had no problems with IVIG when I had it after my transplant, so I told them, if they could get the authorization, that I would be willing to try it. They also scheduled an MRI for my most painful joint - that left foot and ankle, to see if they could get a glimpse into what was going on there.
IVIG was administered by a home care nurse - which in the time of Covid-19, kinda astonished me, that they were able to find one and get it approved. What I didn't know (because I was remiss in asking) was that the Rheum wanted me to have four consecutive days of IVIG, a month, for at least a year. Woah. I didn't realize that it was such a long term commitment when I signed up. I was hesitant to sign on for the Rituxan treatment, since it was administered weekly, for an entire month. Not to mention the fact that it's hard to have someone in your home for four to five hours a day, four days in a row, every single month. But, how can I not try? If something is going to make me feel better, and give me some semblance of a life back, how can I not make that small sacrifice, and at least try? And my nurse was totally nice. Its just a hard thing. But hey, I'm used to doing hard things.
So one total bummer about the IVIG is that I don't have a picc line anymore. I completely hated and loathed my picc line...but that means that the nurse put in an IV, and then we left it overnight, so that she could use it the next day. Talk about being completely incapacitated. Try to do anything meaningful (like sleep, even) with an iv in the crook of your elbow. So the first one worked out, and we were able to use it for day two. But that second one. No such luck. The second IV was placed in my left arm. No trouble with it on the first day, but by the second day, it had gotten crimped. So another IV, back in my sore right arm, for a total of three for my first round of IVIG.
Besides that lovely-ness, I also felt itchy. Like internally itchy. Like it make me itch all of the time. I broke out in a rash, ran a fever, my gums started bleeding. Couldn't make it through the day without a 4 hour nap. So the first round sucked.
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| Feeling Flushed After IVIG in October |
And then before I knew it, it was time for my second round. So I pulled up my big girl panties, and started round two. Less itchiness. Thank heavens. But my arm was sore. Like so sore. And my veins were starting to give out. On day three, the nurse couldn't get an IV in my elbow bend, on either arm and had to insert one just below my thumb close to my wrist. The IV Benadryl burned like a mother trucker when she put it in, but the infusion went ok. Until the next day. My arm was so, so sore. And swollen. And red. And hot. Uh oh. I had a red line running from my wrist to my elbow, so the nurse called the pharmacist, who told her to "probably" not proceed with the last infusion. The doctor eventually concurred with that decision, and told me I should consult my primary physician to make sure that I didn't have an infection. Um, I don't have a primary physician. You guys broke me, and now it's your job to fix me. So I emailed my NP, and sent her a picture, and she said that it looked like phlebitis (which is an inflammation of the vein - I knew there was something wrong when the IV benadryl had burned so badly going in.) Since I had no fever, and the redness and swelling seemed to be going away on it's own, she was ok with me treating it with warm compresses and ibuprofen, but wanted me to come in if it didn't continue to get better, or if I started running a fever. I agreed. I also decided that I was done with IVIG. It didn't seem to have any positive effect on my joints/pain, and all of the side effects were just too much for me to handle on top of everything else. I still have several thousands of dollars worth of IVIG sitting in my fridge from that last dose that I never recieved. I can't give it back, and I can't bring myself to throw it away. So right now it's just taking up real estate.
The MRI did not show any significant joint damage, just unexplained swelling of the tissues.
Failure after failure. And every time I try something new, I feel like it sets me back. I feel like I was better before I tried whatever new concoction they've come up with for me the week. So I'm on a break. I told the doctor at my last appointment, that I just need a treatment break. (I'm still taking my usual meds - the same ones that I've been on since my transplant - but I just need a break from trying new treatments.) My body and my soul are tired.
My hair has been growing, but it doesn't look good. Most days I look like this:
My state is again on corona virus lock down, but really? I've been on lockdown now for over two years, so it's not even really anything different for me. No one that I know personally has contracted Covid-19 (knock wood) which makes me immensely grateful. So we're just poised here to have another quiet Christmas, which like I said before, is my happy place anyway. We've been very cold and dry so far this winter, so a little snow would be okay too.
For those of you that have sent me a message, or an email checking in, thank you so much. I so appreciate all of you for caring, and wishing me well. I'm sorry that I've been so remiss with the updates, it's just been a hard year for everyone, and I'm trying not to be such a bummer, man.
