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I Nearly Died Last Year and Now I Have To Do The Same Thing On The Same DayA Year Later-So Anxious!

Last year on May 19, 2022 I went in for my routine Remicade infusion and bloodwork. I had been told my liver enzymes were a little elevated but nothing that they felt I needed special medication or a new specialist added to my team. The day after my infusion I felt really bad, but I thought it was because I was a having a really stressful time at work. I woke up on Saturday morning with pain at the bottom of my sternum. I thought it was heartburn so I took some medicine, it didn’t work. I started having trouble breathing so I used my inhaler which helped with my breathing. Later in the evening I had to use my heartburn meds again. I started checking myself for heart attack symptoms-none, but the pain increased. I eventually got to the point of tears I was in so much pain. My fiancé (now husband) was cooking supper when he came in the living room and saw me crying he dropped everything and took me to the hospital. I was in liver failure with enzymes near 1,000. (If you’re unfamiliar with what’s normal it’s 50-55.) The next week I was in the hospital but don’t remember a lot. Over the next couple months I had tons of blood draws, scans, and a biopsy. I was told if I didn’t have a transplant I was going to die. I was diagnosed with Autoimmune Hepatitis. It was an emotionally and physically draining summer and then I started back to teaching the best I could with enzymes that started going down for no reason. I stopped Remicade and started Rituxan in November. This coming Thursday I have my next Rituxan infusion which will exactly one year from when the nightmare started. I start crying when I think about going for my infusion. I’m so scared about getting it. I know my enzymes are ok but I can’t stop feeling anxious about it.
I know I’m going to be ok. I just needed to vent about it. Thank you for reading this far. #AutoimmuneHepatitis #RheumatoidArthritis #Lupus #ComplexRegionalPainSyndrome #chronicmigraine #remicade #rituxan #Fibromyalgia #ChronicIllness #ChronicPain #Anxiety

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Third Dose Booked Today #COVID19 #Immunocompromised

💉 if you can get vaccinated, get vaccinated. Not all of us can make the antibodies due to the treatments we’re on so we’re counting on you to keep us safe. Yes the vaccination doesn’t guarantee you won’t get Covid but it lowers the bio load of the virus in your body. So when you sneeze instead of unleashing the army you only release some soldiers from reserves; Instead of the entire national defence haha. (Bit of my history I’ve had two PE’s (Pulmonary Embolism - blood clots in lungs 2014), have a lymphatic disease and potentially an undiagnosed autoimmune disease. I’ve had minimal to zero side effects from the two vaccinations I’ve received previously (Pfizer). I took Tylenol following my injections in 4hr increments for the first couple days and believe this help prevent/alleviate any side effects). Choice is yours, always loved.

Let’s get through this, let’s protect each other 💪

“I’m jabbing, just jabbing, I just wanna jab it in you.” 💉 🎵

#Immunocompromised #thankyouforwearingamask
#washyourhands
#safetyfirst
#rituxan

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Rituxan

Hi! How is everyone? I’ve had RA since I was a kid and I’ve been enduring the deformity aspect of the disease. I’m learning to switch my hobbies, for instance, from playing sports to playing chess and reading. I haven’t been able to play a sport in years but it’s been a long battle with my mindset, even though I physically wasn’t able to play. How have you switched and grieved new lifestyle changes? #therapyisvital #Journaling #RA #Support #Community #rituxan #Methotrexate

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Starting Rituxan Friday #rituxan #RA #RheumatoidArthritis #Lupus

Starting Rituxan Friday - already on Methotrexate for a year and it's no longer enough. Feeling good about my choice to do this infusion, but nervous because of the dangerous side effects and the chance of a serious reaction during infusion. but...i feel supported by my family and doctors. Just reaching out to see if anyone has any tips for the 6-hour infusion time in addition to reading, crosswords, etc? Should I bring a pillow? Blanket? Thanks for the tips!

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