Rituximab Questions

What is your diagnosis for Rituximab infusions and your dose/schedule?
I did not have it myself, but other patients reported extreme fatigue post infusions, e.g. feeling "wiped out". I did not see comments for how long extreme fatigue may last post infusion, as it is given every 6 months.
Some patients with neurological conditions reported that fatigue was within tolerance limits, and they were willing to stay on the drug, as long as it worked. Quite a few patients reported that it was helpful in RA and in neurological demyelinating conditions.

Thank you for your response.I have been diagnosed with pemphygus vulgaris,
I've been on cellsept then Myfortic. Since february some benefit , but doctor is now considering the infusion. I also have thalassemia intermedia, And current treatment has lowered my hemoglobin considerably , so I am anxious about having something as strong as the infusions , because I am already completely wiped out. My entire treatment, If I Stay on course is only about a month to finish, so I hesitate to get deeper into side effects and fatigue and become anxious.I will not bounce back If I were to step up to the infusion.

@cicimee2 Hi, I’ve been on Rituxan for about 2 years. No side effects(that I remember) and felt super great after the infusion. I will probably be on it for life, unless someone comes up with a cure for my AI. I got Clippers in 2018 and tried everything until I was stable with no signs of disease. (Clippers== chronic lymphocytic inflammation with pontine perivascular enhancement responsive to steroids). No sign of disease means just that. There are no lesions on my brain and I’m stable. If I quit rituxan, the disease will come roaring back, and I don’t want that. I plan to live longer without Clippers! Becky

@becsbuddy
Thank you for writing that is incredibly encouraging. It is not always a good thing to read. The side effects from medications because one never knows if they will be part of your journey or not. And yet, you want to be prepared as if that were even possible.. I'm so glad you have had a good experience.And thank you again for sharing with me.I wish you all the best to continue

I am having my 5th infusion tomorrow…had 4 infusion 6 months ago a week apart. GPA/MPA. This round was 2 infusions 15 days apart. After that 1 infusion every 6 months. I have fatigue and flu-like symptoms for a couple weeks after. I was on hydroxychloroquine and prednisone about 7 months. It was awful. After I stopped those I had more energy and felt better for a bit. I am still tired from the last infusion but I still do stuff and rest when I need to which is a fair amount. I am anxious to see how I do after this one as I don’t want to take other meds. I generally have all the bad side effects!

My husband was detected with nurofascin 140 positivity after almost a year doctors testing him for every other nuro issue & then saying he probably had MND. But now once the new doc tested & 140 came out positive- they are treating it as an auto immune neuropathy & this he was given 1gram of ritauximab in iv & then 14days later,yesterday he was given the second dose of the same.
The 1st 10days post the ritauximab infusion brought a lot of fatigue & it seemed like he was forever drowsy. He is turning 38 & has a fairly active work schedule, his energy came back by day 11 & then on day 13 the second dose was put- he didn’t get immediately fatigued but today he came back early from work & just slept for 3hrs straight so on 2nd day post the 2nd round of ritauximab the fatigue is setting in.
My trick is to maintain his hydration & I made peanut butter,almond butter at home - I keep giving him that with water soked dates ,with fruit milkshakes as energy boosters twice a day. (He has swallowing swallowing difficulty & loss of tongue movement & speech due to 140 positivity since last year)

I had my first infusion last February and it was amazing. I had pain where I didn’t know I had pain. No side effects. Rituxin also fixed my long time sun blindness, a major symptom because the sun is always shining where I live.
My Rheumatologist has a plan for me. Each infusion is a measurement. The dosage and type of infusion may change.
He also said the “relief” may not last 6 months and he would adjust as needed.
My pain level has increased. I’m okay with that because I have confidence in my doctor and know my symptoms will improve.
A side note. I regret not listening to my doctor when he recommended IVIG because it is a better match for my symptoms (Sjogren’s + other diseases.) IVIG is administered 6X more often, ugh. What I thought would make it easier for me actually made it harder. Next time I’ll listen to the doctor.

@texasblooms
Thank you for sharing. What is your diagnosis for use of Rituxan?
Do you have any improvements in mobility, e.g. less joint pain and stiffness post Rituxan infusions?

@altabiznet Definitely relief in joint pain, stiffness, and swelling. After the infusion I felt a lot better within a couple of weeks. I had energy, color in my lips and face, didn’t feel fragile, could easily get out of bed, and lifting was easier. I felt amazing.
Before the shot I found it hard to understand and describe my AI symptoms, the body pain clouded my thoughts. I feel I have more clarity.
My mobility is a much better. I can walk barefoot on the tile floor! Pre-Rituxin I had to wear shoes with thick gummy soles.
Today my pain and stiffness are mild and it’s okay if it worsens. I felt better than I did in years and know I can feel that way again.
I wish I could give you a better answer on mobility but my secondary diseases affect how I walk. The pain, stiffness and swelling is better. I’m very careful and sometimes use a cane.
Practicing self love and respect everyday. Wishing everyone a sense of community and togetherness.

@texasblooms
Thank you for the encouragement.You sound like a strong and courageous person.These tests we go through certainly can bring out qualities\nThat stretch us. My diagnosis of pamphygus vulgaris Has manifested mostly in the mucosa of my mouth . I have been dealing with it for years and was only diagnosed in february. The three month protocol Myfortic Has only brought partial benefit.That is why the doctor is thinking of the infusion. One of my main concerns is that I also have a blood disorder called thalassemia intermedia.\n And the myfortic has lowered my hemoglobin, so I need to get that managed before I can move forward.Otherwise , I don't think I will be able to leave the house and I have lost a lot of life to this already. I am so happy to hear you have had good results from that infusion.Thank you again for writing.