“May your mind be infused with 'one' thought(concentration of mind)! May every action of yours be embellished by 'one' thought! May your resolution be 'one'. You, who are acting to the contrary, your disposition shall have opposite orientation.”- Athra Veda
I hope to keep it short today. I want to give you all on update on all health related things, so here goes.
I had both rounds of Rituxan infusions and everything went GREAT! I couldn't have asked for a better outcome. Although I still don't know if it's officially helped or started to reduce the kidney inflammation, I can say that I feel like a completely new person. I have had more energy in the last few weeks than I've had in years. The pains in my side from the lung inflmmatio (pleuritis) are minimal and only mostly at night or after a large meal, but still a lot LESS than what it has been. I don't really have any fatigue unless I over exhaust myself and my muscles and joints feel really strong. I'm also eating better/more and most nights I can sleep alright.
I'm still having some issues with my hands and fingers. The ulcers don't want to heal and my fingertips just feel really sensitive lately, even typing this hurts. I see my doc on Thursday of next week and will definitely ask him about it. But overall, as you can see I finally feel like I'm getting some much needed relief!
The Rituxan infusions were a piece of cake for me. I was able to bring books, my laptop, my phone, a few magazines and even a snack. The first infusion took about 4.5 hrs since they had to be sure I wasn't going to have an allergic reaction. And thankfully, I didn't. The worst part about it all was the fact that nurse couldn't find a vein so she had to stick me twice, this as you know, is not unusal for me. After about 10 minutes I actually just fell asleep, soundly! As you can see from the pic, those chairs are REALLY comfortable, so I just reclined back, wrapped myself in a blanket and took a two hour nap! I also think it was the Benadryl kicking in and the fact that I didn't sleep well the night before due to being anxious about it all. (They make you take Benadryl and a Tylenol before the procedure to reduce the risk of an allergic reaction and pain.)
My mom and Lupe were there and kept me company. They had a TV in the room and one other patient. It was actually quite relaxing.
The second infusion was only 3hrs because they could give me the medicine more quickly since I responded so well the first time. This round went much the same. I took a bunch of stuff to do, and barely did any of it cause I fell asleep almost immediately. I did experience a few hot flashes after both treatments on the ride home but that was about as bad as it got.
For those of you that don't know, here is a little info on what Rituxan is: (I had some trouble getting insurance to approve it because it's not "FDA approved" for Lupus nephritis, but of course my amazing Rheumy worked his magic and made it happen- this requires a lot of paperwork on his part and a few phone calls on my end)
What is Rituxan? (www.drugs.com)
Rituxan (rituximab) is a cancer medication that interferes with the growth and spread of cancer cells in the body.
Rituxan is used to treat non-Hodgkin's lymphoma or chronic lymphocytic leukemia. It is also used in combination with another drug called methotrexate to treat symptoms of adult rheumatoid arthritis.
Rituxan is also used in combination with steroid medicines to treat certain rare disorders that cause inflammation of blood vessels and other tissues in the body.
Rituxan may also be used for purposes not listed in this medication guide.
So, as you can see, Lupus patients DO and CAN receive "chemotherapy." Everyone's eyes widen when I tell them this and they assume I'm going to lose all my hair and that I must be dying. Not. True. Rituxan along with many other drugs simply suppress the immune system, and since my immune system is attacking itself and over "excited" that's what I need to do and that's how these types of treatment help.
I am glad that it seems to be working and helping with my overall health. Next week I go in to see the doc, get labs drawn and find out what the blood work says. Hopefully it reflects how I feel! - All good in the hood! lol
I know that being in a good place emotionally and mentally helps with overall physical health, but I do feel like the reverse is also true. I feel better emotionally because I feel better physically. I don't think it's JUST the other way around as some would have you believe.
Regardless, although I am still leery that all of this energy and good health is only temporary, I will embrace it and enjoy it for as long as it chooses to last. Afterall, I've had some pretty shitty years and really deserve a break!
(Stay tuned for next week's post on Writing and Getting Wiser)