My Six-Hour Rituxan Infusion For Autoimmune Disease
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- Опубликовано: 24 июн 2023
- Come along with me as I receive one of two Rituxan infusions at Keck Medicine of USC to treat my autoimmune diseases, Rheumatoid Arthritis and Scleroderma. This is a medical day/hospital vlog!
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#autoimmunedisease #autoimmunediseasewarrior #rheumatoidarthritis #rheumatoidarthritiswarrior #scleroderma #sclerodermawarrior #systemicsclerosis #systemicscleroderma #chronicillness #chronicillnesswarrior #spoonielife #spoonie #medicallife #medicalvlogs #medicalvlog #hospital #hospitalvlog #hospitalvlogs #infusion #infusionvlog #rituxan #rheumatology #keckmedicine #keckmedicineofusc #rituximab
First let me say thank you so much for making this video, it helps a great deal. My older sister is getting her first round today for her kidney disease. She recently had a stroke as well so she's been on all kinds of meds and blood thinners. If you could please just pray for her I'd appreciate it. She is very scared. Thank you again God bless🙏🖤💯
I apologize for my delayed reply but I’m definitely praying for your sister! ❤️ She’s really lucky to have you, I know being the support person for a chronic illness Warrior isn’t an easy job..,,you are so appreciated!!! I hope her start on Rituxan went okay. Please keep me updated. Hugs! ❤️
Thank you for sharing this Elaine. You are very brave and generous to do this. I have my first infusion next week and this was so helpful to get a patient’s perspective. I also have scleroderma with moderate interstitial lung disease and hoping this will help.
Hi, this is my first time joining a autoimmune support group. So happy to find others going through the same as myself.
I’m so glad you are here! You definitely aren’t alone in your journey…I totally understand and am here if you need a listening ear! I’m sending good vibes and prayers your way! ❤️
Elaine thank you for this video. It is very helpful to see this in real time. You are wonderful at explaining things to us. ❤❤
I’m so glad you found it helpful! I really enjoy sharing these experiences with you all. Thank you for watching and being here on my channel! Hugs! ❤️
Thanks for this video, We just discovered that my daughter needs to go through Rituxan procedure and this experience is very helpful!
I took Rituxan for a few years and I did well on it, but eventually it stopped working as well. However, I had uterine cancer and had chemo, which actually helped my RA a lot. Right now I’m just taking Arava and it seems like my RA is stable. If I have to go back on an infusion med, it would be Rituxan since it does not increase your chances of cancer. I hope you do well on this long term. I definitely recommend bringing snacks and drinks. It is a pretty long and boring day, but it’s also some down time that you can use to relax a bit. Best of luck to you!
Thank you! 🥰 I’m happy to hear you are now stable. You definitely are an extra tough warrior to tackle both cancer and RA. Thank you for sharing your story with me! I am so honored to learn other’s experiences. I’m sending prayers and good vibes your way that your stability continues for many years to come! Hugs, Warrior! ❤️
@@ElainesAutoimmuneAdventure Thanks so much! ❤️. I appreciate all of the realistic and factual information you provide on your channel!
Thanks for sharing your journey. I am scheduled for my first infusion in 4 weeks. I am so anxious, this really helps
Thank you! Getting ready to start soon.
I hope you are able to find stability and better days ahead with it! Sending you good vibes and prayers! ❤️
Thanks for sharing. Scared out of my wits. But started this week 3 more to go. For AIHA.
I felt tired afterward.
Thank you for sharing your journey...
I will be starting my treatment on rituximab in a few weeks. For Pemphigus vulgaris .. I do pray for good results..
Thank you for sharing this experience.
I’m glad I could share. Thank you for watching and for your comment! ❤️
Thank you for sharing I have my second round on Monday, I'm so glad to have started it again as I'd been taken off it since 2019 because I had a infection in knee replacement. Ritux is my wonder drug it's the only thing that's worked for me in 25 years and I've tried ever other biologic but nothing has worked anywhere near as good as ritux. I'm from the UK and was interesting to see how things are done in the US it's good to see its not just the uk that keeps you prisoner for 6hrs 😂 hope it makes you feel lots better ❤🙏🏼
Thanks for commenting and sharing your experience. I totally agree it is cool to see how things and medications are done in different countries (I personally like watching UK and Australian patients to see their experiences). I’m sending good vibes your way for Monday! I hope your return goes well and you see relief quickly! ❤️
Thank you Elaine for sharing your experience. My doctor advise me for rituximab to treat auto-immune disease that is causing protein-urea. I was a bit scared about reading side effect but got courage with your shared experience, it seems normal after taking infusion.
Thank you for sharing this information it is definitely helpful!
I’m glad it helps! ❤️
You go through so much thank you for sharing you journey ❤️🫶🏻😘
I’m happy I can share my experiences and journey! Thank you for watching and commenting! Thank you for your continued support! ❤️
Hi Elaine. Just came across your channel. Been though the same journey. My neuro put me on it for my CIDP, plus I'm 3 times immunocompromised with Graves and Lupus. Fortunately where I was going was a room with 2 recliners, tv, very private. They would pop in to do my vitals and bring a little basket of snacks and offered more water or Sprite. Come lunch time they would give me a menu to order from. Yes, pre meds would make me hungry plus gave me RLS so i would have to take a Requip and walk it off. My infusions were 1 a month for 6 months. With 2 to go i took myself off of it because my white cell count was dropping and i had to see Hematologist that wanted to do bone marrow biopsy. Im glad you are getting to continue yours. Best to you and David. I do have to get IVIG infusions every 2 weeks and they last about 5hrs 30 mins.
I apologize my response is so late but I’m so glad you found my channel and shared your story with me. Your infusion center experience sounds positive but I’m sorry your WBC was dropping. They actually are discussing adding IVIG to my current cocktail. I hear good things about it but the side effects kind of scare me. 😬 It’s nice to hear your experience. Sending you positive vibes! Hugs, Warrior! ❤️
Can you drink alcohol with Rituxan?
@@maryjaneogren8856 I have no idea since I don't drink alcohol. I have a brace on my left leg, so I have issues walking anyway 😉
Yes I go through the same journey ❤
I hope Rituxan is giving you stability too! I’m sending you good vibes. Thank you for being here and commenting! ❤️
Hello from the UK. Thanks for sharing your journey hope you doing well! I have my first infusion on Tuesday am so scared 😱 no just the day of the infusion bat after that. Do you have to stay forever with a mask everywhere? Am asking because am working with children. Thank you .
Fellow RA warrior, thanks for sharing this. 💪🏼♥️💪🏼♥️
❤️ Hugs, fellow Warrior!
Thank you for making this video. My mother 59 years old is diagnosed with lymphoma (spleen removal done and this was found in her spleen biopsy).
The doctor has suggested for rituximab 4doses each 1 week.
Just wanted to know is this a paintul process ? Will she lose her hair ?
Hi Im starting next week, for my RA. Im very nervous, Ive never had am IV before and Im a bit nervous of just bad reactions during the infusion. Thank you for sharing.
Good luck, best of wishes to you!!!
Thank you! ❤️
Such a brave warriors
Thank you! I’m truly honored to be a part of a community of such brave and resilient people! Our Warrior community is truly awesome!
This is the medicine they gave my father for autoimmune hemolytic anemia that almost killed him. He has type 1 diabetes x 40 years then Chronic Lymphocytic Leukemia x 4 years unfortunately had a mild to moderate skin break that became infected. After a prescription antibiotic he developed the AIHA. Scary times, but this med helped so much. He had 8 blood transfusions and unfortunately will be on IVIG monthly until he dies.
I’m sorry that happened to your father. I’ve found in my journey that Rituxan isn’t a first line medication used because of the infection risk. I actually had to discontinue it at the beginning of the pandemic because my team weighed the risk vs benefits during the pandemic and the risk outweighed the benefit at that time. Because I’m still in the work force, I am exposed to infection. My Rheumatologist and Immunologist are so careful in monitoring my health. I’m a lucky patient when it comes to my medical team. I’m sending extra prayers to your father. I hope he finds stability. I’ve heard really good things about IVIG (it’s actually something we are discussing adding to my cocktail). ❤️
I will be starting rituximab in 2 weeks, I am nervous about it...but I use to get remicade infusion before I had a reaction to it.
Thank you so very much … very informative … I’ll be starting my first infusion in the coming weeks … it’s been a very painful and debilitating road to get to this point.
I hope you find stability with Rituxan. I’m sending good vibes, extra strength and prayers your way! Hugs, Warrior! ❤️
@@ElainesAutoimmuneAdventure … just had my 2nd infusion and so far so good, but I was told that might a result of the steroids they pump into you first, but I have noticed some improvement …
hui! my name is Gabrielle, im 19 years old and I have my first round of Rituxan in 2 days as well as plasmapheresis for my blood disease. a little stressed but im hopeful. Im sending you prayers
Hi Gabrielle! I’m so glad you found my video and I hope it helped prepare you a little. I totally know the stress you’re feeling…it is always scary to start new medications. Thank you for the prayers and I’m totally sending some back your way too! I hope you find stability and help with Rituxan and in your journey. Hugs, Warrior! ❤️
What side affects did you have.? I have to this infusion for neuropathy
Hello mam plz just inform me about ritixumab infutn i m a pateint of myasthenia gravis from 2002
Probably gonna pick Rituxan for my pemphigus vulgaris
I hope you find stability with it. ❤️ I’m sending you good vibes, Warrior!
My pulmonologist wants to put me on rituxan. I have chronic inflammation and hypothyroidism. My chronic inflammation is ruining my lung function. I already on Privigen IV infusions twice once a month. Been doing that for 6 months and really hasn’t done much. So I’m very scared to go on rituxan because of the side effects.
Hey. Thank so much for this video. I going to start Rituxan within the next few weeks. What side effects have you experienced and has it affected your livelihood?
Besides the side effects I talked about in the end of the video, I haven’t experienced anything else. as far as livelihood…I do have to take the day off of work and have to work from home during the process of both infusions. Hope that helps! I hope you find stability with it! ❤️
Thank you so much for this information
So glad to share my experience! Thank you for watching and for your comments! ❤️
Is it improve the symptom of myasthenia gravis or not my leg and arms eyes doesnt work perfect
Hii can you share your experience please
I have my first dose tomorrow.
I was happy to find you are on ur second.
I actually found this so unhelpful.
You don’t touch on how you feel vs the R meds or/if anything happened/happening (reaction wise) which I was really disappointed to hear u mostly talk about David’s broken toe & going to the bathroom! 😳
I’m so sorry you found my experience unhelpful. I hope your infusion goes well and you find stability with Rituxan. Sending you good vibes! ❤️
I did one infusion with Rituximat. 6 hours was too much for me. The steroids put me in the hospital for 2 days, my body retained too much water couldn’t breathe. So off Cellcept now. Hopefully all goes well . On oxygen
Oh no, I’m so sorry for your experience. Medications are such a patient to patient experience…I’ve experienced that myself with other medications. I’m sending prayers and good vibes your way. Thank you for sharing your story with me. Hugs, Warrior! ❤️
Have you had any side effects from Rituxan? I'm about to start soon prayers for me everyone. I wish you all the best with your treatment as well.
I apologize for the delayed reply. Besides the side effects I mention in the video really nothing else. For me, it is mainly fatigue that follows my infusions but it’s short lived and I find I can muscle through it. The benefits have far outweighed the risks in my opinion. I’m sending good vibes your way as you embark on your Rituxan journey! ❤️
I have systemic sclerosis over a year now but they never recommended me this meds before I will discuss it with my doctor to see what he says. How long and how often you do this for please?
Rituxan is not a typical started drug for Systemic Sclerosis. Because it still isn’t approved for Scleroderma treatment in the US and Europe a specialist usually has to appeal the process of getting it approved. It definitely is worth asking your Sleroderma Specialist about if you aren’t seeing a response to other medications. I have found that Rituxan works well for my skin issues. I’m on a 4 month Rituxan schedule so I receive 2 rounds (2 weeks apart) every 4-5 months (depending on how quick insurance approval comes in). Hope that helps. Sending you extra spoons!
Hi I been on Embrell injection for 3 months but I still don’t see any results I just wanted to ask you if I fission works for rheumatoid arthritis
I’m sorry you aren’t finding relief with Enbrel. Yes, there are infusions for Rheumatoid Arthritis but there are also now JAK inhibitors, a daily pill, that patients like to try after Enbrel. I hope your Rheumatologist is able to help you find a better cocktail. Sending you good vibes and extra strength! ❤️
After taking rituximab can I go to my work. My doctor suggested me to take two dose of rituximab injections for antiphospholipid anti body syndrome
I’m sorry I’m so late with my response, the day of the infusion you probably want to take off but the day after you will probably feel okay to work. I will say for me, I do my infusions on Thursdays. I take Thursday off of work and work remote on Friday then I’m off the weekend and am back at it on Monday. I hope that helps! ❤️
I have fibrosing mediastinitis I wish to start rituximab did it help you out after ?
Rituxan helps me. I have Scleroderma, RA and Lupus. I’m not sure if it helps Fibrosing Mediastintis but I’ve had a positive experience.
Hello do you know if works for myasthenia gravis?
It does I do it
I apologize for my late reply but I actually don’t know if it is used to treat myasthenia gravis. I’m really happy to see a fellow warrior was able to answer your question though. Yay!
Thanks for sharing the video.... please let me know if we need to drink lots of water before and during the infusion
Yes it's helpful. Also you can get a headache from not enough fluids
I’m sorry my reply is late but I’m happy to see you got a reply from a fellow warrior! I do try to drink and stay hydrated the day before because it does help with finding veins the next day for the IV. Being dehydrated can make it kind of difficult to place an IV. During the infusion they infuse saline with the medication so I find I stay pretty hydrated that way. After the infusion, I try to drink extra amounts of water for a couple of days. Hope that helps! ❤️
Whats the duration gap between 1st and 2nd dose??
For me, it’s 2 weeks. I think the duration is the same for all patients but I’m really not sure. Hope that helps!
Did you lose hair at all?? I am to start on the infusion soon.
I have not lost hair with Rituxan. I don’t believe that is a side effect of the infusion. I’ve actually seen a good improvement with my hair with it. Hope that helps! Sending you good vibes as you begin your Rituxan journey. ❤️
I went through the process of getting this medicine into the SUS, I'm waiting. They gave me 1 month, clear my doubt?? Does this medicine require ice with izopor? to get it from SUS????
I am Brazilian !!! 🇧🇷
I’m not sure how it works in Brazil. I’m in America and in the USA we have to get insurance approval which is usually granted after we try other medications. I’m sorry I can’t be of more help. I hope you are able to get the process cleared soon.
Have they asked you to get a port?
The infusion nurses recommended I speak to my doctor about a port. My doctor isn’t pro port for my care. The infection risk is too high and I still have sites that can be infused. ❤️
God bless
❤️
Have you experienced any side effects?
Other than the side effects I discussed at the end of the video, I haven’t experienced anything else. ❤️
Hey 👋
👋🏼 Hi Warrior Friend!
But I'm scared to take that injection bcoz of its side effects
What side affects of Rituximab?
The side effects really aren’t that bad as compared with some of the other biologics.
Besides the side effects I talked about in this video…mainly the most bothersome side effect is fatigue for me.
@@ElainesAutoimmuneAdventure thank you for your reply. It's been one month my husband taken rutiximab he doing well no side effects nothing more energetic too
Ir too healthy to get thos medication, i wish I can see this for person over 65 and see what happens
Your voice is all muffled😖
This is so great! I’ve had 10 rounds of Rituxan due to my GPA, thank you for sharing this, wish you nothing but the best 🫶🏻
Thank you! 🥰 And, thank you for your comment and sharing your experience with Rituxan.
Thank you for sharing this Elaine. You are very brave and generous to do this. I have my first infusion next week and this was so helpful to get a patient’s perspective. I also have scleroderma with moderate interstitial lung disease and hoping this will help.
Hi , Can you please let me know what was your experience? My wife's infusion is planned next week since she has been identified with moderate ILD due to CTD. Did you see any improvement post infusion?
@@aprabhakar1991 my first infusion went pretty well and the second one is tomorrow. To make sure you don’t have an allergic reaction, they give you some premedication. the Benadryl made me drowsy and so I slept through most of the infusion. The prednisone gave me some pain relief for a few days after. I was a little groggy the next morning but was able to work from home. I don’t have any ILD symptoms so I can’t say that I noticed any change. I only was diagnosed from a CT scan and possibly had it for a while. I have a follow up with my pulmonologist next week so I will learn more about how to tell if the treatment helps. I followed several of Elaine’s tips carried a bag containing a water bottle, snacks, a book, headphones, iPad, a charger with a long cord, blanket and wore comfortable clothing. I was there for roughly 4 hours. Good luck to your wife.