I am diagnosed with bulleus pemfigoïd and I had rituximab. I had 8 infusions and I am free from prednisone and all other chemo medications. After 10 years I am free of medication it's really a miracle. The side effects were worth it.
The rituximab is my savior actually 🙏 I thought I would never get better and would die of an infection. I was in hospital with 42 Celsius fever because of my open wounds all over my body inside out horrible 😫
Thank you for sharing! I had my rituximab infusion 8.5 years ago and it was a bit of a different experience as I was fully admitted to the hospital for about 48 hours and the infusion was a very slow 24 hours. But despite initial worries and hesitations about side effects, it's been the best thing. No major relapses since! I hope rituximab gives you similar success!
thank you for watching! 👏 oh wow you’re so strong! 48 hours! I’m so happy to hear that you’ve not had any major relapses since, that makes me very happy! thank you!
@@iabili Hi Ian! thanks for your message, that’s great news to hear you’ve not had a relapse for 3 years- that’s really brilliant! There’s hope for us all!
Thank you so much for these thoughtful and positive videos! I am starting a 4 week Rituximab infusion course on Monday and was a bit worried. Not so much anymore! This video and your positive attitude really helped. Can't thank you enough. Stay well!
I have been going for Rituximab infusions for 2 years, now 6 months spaced apart. The infusions have worked wonders for me. Your video was really informative for first time patients but I had a little chuckle how you packed for this infusion 😂. I only brought a snack, water and my iPad. Good luck with your journey, hoping these treatments are successful for you ❤
Thank you for your video, Jasmine. I am 65 and had my first Rituximab infusion almost two weeks ago for R.A., and Sjogrens. I will be having my second one in a few days. It has been a pleasure watching your video. Sending my best from the High Desert of Central Oregon, USA
Hi, great informative video, I've been on Ritux for a couple of years now for inflammatory Arthritis. In my trust i have to get my ritux over 6hrs; all depending on how busy they are getting my pre meds done i can usually leave around 1730 in afternoon after 8:00 am start. Its such a loooong day and while its just sitting down all day it can be really tiring. I dont know about yourself but the only real side effects I get is for around 3 days after I feel a little washed out and under the weather but nothing that isn't managed with rest and a good boxset with chocolate. wishing you well, keep smiling 😊
Thank you for posting your experiences, Jasmine. This video helped me a lot! And I share it often when I meet people online who are nervous about Rituximab and what to expect. I really appreciate that you took the time to make and post this video and others about this treatment.
thank you so much for uploading this!! I am 15 and have lupus nephritis. I am starting my 2 year rituximab infusion next Wednesday and I am feeling very nervous and scared but this helped a lot
I came across your videos trying to see what to expect. I have my first Rituximab infusion on Monday, August 2nd. I am extremely nervous to say the least as I have had bad reactions in one way or another with all the medications I have tried. This is kind of like my last hope. I do not have nephrotic syndrome and am kind of a medical mystery or so I have been told. Basically my inflammation is 6 times higher than what is normal. It is affecting my organ systems now. I also have joint stiffness, incredible swelling. On the other hand, I see a Hematologist Oncologist because my blood markers lean towards a B cell cancer, like lymphoma, multiple myeloma. They both agree, Rheumatologist and Hematologist, that this is the best course to try now. I am going to ask them to put it at super slow speed at first, I have plenty of time...lol. Again thank you for sharing your journey with us. Prayers for good health.
Thank you so much for taking the time and effort to make these videos for us. edit) personally have had about 2 infusions and they have worked very well for me and stopped me from relapsing.
I know my comment is super late but I am a 14 year old with the same condition and I had it since the age of 3. But I am finally starting Rituximab on the 17th. Your videos are so relatable and make me feel a lot more at ease. I am going to now binge your videos and sub.
never too late! best of luck with your Rituximab, I hope everything goes well for you! glad you feel you can relate- you’re never alone in this journey!
@@Littlerockjw Omg, things went to shit basically, um so Rituximab gave me 9 months of relapse free life, then the relapse that followed had me hospitalized because I temporarily became steroid resistant and developed a clot so they tried to infuse second round of Rituximab and I had an allergic reaction. Since then I have been taking a combination of tacrolimus and steroids (prednisone) during relapses, and I think over the last year I have developed steroid dependency and can't get off steroids for more than a week.
Hi Jasmine! I feel you are a UK version of me! I am from the US and your story is very similar to mine. There is talk about me getting Rituxamab within the next month so it was really cool to see you vlog about your experience. Hope you are still going strong! Much love and shout out to you, you are awesome 😊
hello! yay NS sisters! wow what a journey! I think it’s important to put this information out on video as I was definitely very scared before treatment but turns out everything was good 😌 big love your way!
Thankyou for your insight. I'm 50 and a bit scared I'm 6'2" 150kg skinhead and I feel like a kid before the dentist. My Ritux appointment is #1 tomorrow morning. I feel a bit more at ease thanx to you. Membranous Nephropathy is stripping me of 2/3s of my bodies protein and as a result my cholesterol is high so on warfrin also. Thanx again x
I had my 1st Rituximab treatment yesterday (55 y/o male). 1000mg, it took 6 hrs ~ no big issues. This vid popped up in my feed today. The Matrix is working well. I did experience dry mouth. That was it. it sounds like my journey aligned well to yours. Up at 4am went to treatment, went to bed about 9pm. Here it is on day after treatment, and I feel better than usual.
@@nishit1506 I did not have any bad side effects but there are some known. I started low dose and bumped it up after 2 months. You can't stop cold turkey either 9so I am told anyway)
about to have my 12 th course (13 years) of rituximab,if my infusion is too fast i have similar reactions to yours,also tried truxima a substitute biologic,but reacted a fair bit...despite that most infusions go smoothly and rituximab is a life changer for Rheumatoid
So in like 2 weeks i have to have this same infusion and im honestly so terrified because I don’t know what to expect and I’ve already had an allergic reaction to a different medication im more worried about after the infusion and how i will feel I just hope everything goes well thank you for your video hopefully it helps with my anxiety a little
How are you now? I'm getting ready to take this infusion. I care. Did you have any problems? Did you improve? Do you have any advice? Thank you for a reply.
Hey Jasmine, thanks for sharing this. I’ve been strongly encouraged to try this treatment by my doctor for the past 4 years to help treat my myositis (autoimmune disease). I’ve taken all the protocol medications that are used to treat my disease (steroids, methotrexate, mycophenolate, IVIG) and while they have been effective at controlling my disease for a good while, I would eventually have a flare-up and go back to ‘active disease’. I was hesitant about trying Rituximab because of some of the side effects - short and long term- that I read about. Recently though, I’ve becoming more open to taking it. Your video and experience has helped reassure me in finally deciding to take it in the near-future. Of course, everyone’s body is different and will have different responses to treatments like these. But seeing how you’re younger and seemed to have responded overall well to it, it gives me more optimism that I’ll be alright in taking it. I did have a question: is rituximab a type of chemo-therapy, or is it more of an antibody infusion? Thanks again. Keep up the positive attitude!
Hi Mau. I'm also diagnosed with Myositis! I just started Cellcept (Mycophenolate) and I'm on Prednisone. My doctor thinks Rituximab would help me a lot. Have you eventually tried it? If not, how are you coping atm?
@@waiyeeluvsluther Hey! I’ve been through the same medications as you, actually. Was taking Cellcept for a few months but it wasn’t enough to control my flare up. I did eventually try Rituximab (Rituxian) and I can confidently say it has yielded really great results. I took it back in August and it took about 3-4 months to fully take effect, but it has been worth the wait. My strength has greatly improved where I mostly had weakness and I’m able to do more physically demanding things. I’m still taking Methotrexate as a precaution to help keep the disease in remission for longer, but that’s about the only other medication I’m currently on. There haven’t been any side effects in my case, thankfully. Rtx does eliminate b-cells, so it makes you more vulnerable to some sickness. But it’s nothing that can’t be dealt with if you’re doing your best to take care of your health (eating well, good hygiene, seeing your drs when needed, resting, etc.) Again, I highly recommend it. I was desperate for anything that would work because I was in a really rough spot with my myositis. This seemed to do it for me and I would take it again if needed. If you’re down on your options and your medical team has advised that it’s safe for you to take Rtx, I would give it a go. I know this was a long post, but I hope it cleared some things up!
@@mau4604 I hope this comment finds you well ❤. If you dont mind can you tell me your age and Is there any improvement in muscle strength after taking retuximab? Are you able to climb stairs and get up easily from chairs 🪑 .?(Since my father is suffering from same disease). Please reply it would be helpful for me
Thanks for putting my mind to rest Jasmine! I'm getting my 1st infusion in less than a week and not sure what to expect. I'm also very concerned about the period after the treatment when the immune system is low. How do you go about life without catching viruses and infections? Especially at a time like this with Covid. I hope you're doing well!
What an absolutely awesome and informative video. Thank you!! I’m having Rituximab mid June. Hope your feeling well after the treatment. All the best. Liked and Subscribed 👍🙏
thanks so much for you lovely comment and for subscribing! I was pretty sceptical but all turned out fine in the end! Still on prednisolone so only time will tell still if this treatment has somewhat ‘worked’ but all in all I feel great! all best for your treatment!
@@JasminesJourney Thanks for the reply 🙂 I’m also on Prednisone, but I’ve got a different condition to yourself. I was diagnosed with MS in 2013, but they no longer think it’s that, they think it’s now something called Neuromyelitis Optica (NMO) another sinister Auto Immune disease. Like yourself, I document my progress with videos on my channel. The hope is Rituximab will suppress my immune system and stop it from attacking my spinal cord, leading to reduced inflammation and hopefully some healing. A little bit of improved quality of life would be nice. I’m going to check out some more of your videos soon. And, I look forward to your next one. All the best.
Do you mind me asking what dosage of prednisolone you’re on? I’m currently down to 10mg! oh wow 😯 do you know if you’ll have to have a biopsy to determine what up? just subbed to your channel! I’m also hoping that Rituximab has worked out for me, but of course won’t know until I come off the prednisolone- it’s all a waiting game! Hope you’re keeping as well as can be, hopefully I can get some content up soon! 🙏😆
@@JasminesJourney Hi Jasmine .. I started Pred on a high dose of 40mg! This was back in Nov 2019 and this continued for about a year until I just got sick and tired of the side effects. I'm now down to 25mg, but I'm hoping to reduce this further once I've had the Rituximab in mid June. I won't be having a biopsy as they're pretty sure I have NMO. In fact, I spent 1hr 15mins in an MRI scanner Tuesday morning (18th May), the appointment came unexpected and out of the blue, so I'm interested to know the results. Thanks so much for the sub!! Yes indeed, it's all a waiting game isn't it. I understand Rituximab take a few weeks to kick in properly and be effective. Good to hear from you, take care.
I was diagnosed with multiple sclerosis 2 months ago and i have been given steroid. Now im on my first infusion of rituximab. Hoping that this will work for my brain.
Did they also stop your infusions to give you more preventative meds? How long did it last? Thank you! I have this on Monday so just looking how others did.
@jasmine bolton flynn ---Hello. How are you now? I'm getting ready to take Rituximab for vasculitis. Did it help you? How many infusions did you need? How long did it take to work? What things got better? I care. Thank you for replying.
🙋♀️Hi from Austria 🇦🇹, Thanks to you; your experience gives many patients worldwide great hope 🙏 Immun-Thrombopenia was diagnosed three months after my third COVID-vaccination in April 2022 with Confirmaty. Then my thrombos were only 55k. Since a half year I’m taking Prednisolon 2,5 mg daily which stabilized my thrombos at 50k. Additionally I have high Cardiolipid and ß2-Glucokorticoid Auto-immune-antibodies. Therefore and because Cortison is no permanent solution, I will start the Rituximab-therapy in one month. After the therapy I will report to you. ALL THE BEST TO ALL PATIENTS 🌸👏💐💗
Hello Jamine how are you doing now ? Started following you on RUclips . Been diagnosed with MCD last August . Just had my first relapse been on 5 mg prednisone . Can i ask you when your doctor ask you to start doing Rituximab Infusion . ? Wait for your reply many thanks
I have rheumatoid arthritis. i live in turkey and i use mabthera medicine in turkey. , but I had pain, do you have pain too? sorry my english is not very good
Hey dear my daughter is going to take Rituximab first infusion for the serious type of autoimmune disease Lupus,can u please tell me can this infusion have any serious type of reaction ?? Can you feel any reaction during or after the infusion?? Pls tell me dear,I'm very much about it ?? Because my daughter is very small
Hi, Very optimistic video, I got relapse of nephrotic syndrome, Doctor is suggesting to go for RITUXIMAB infusion as I cannot take steroids because it has already affected my bones.I am planning to go for it. Can you please tell me how are you feeling these days and how is your immunity now?
hello. I can’t really tell you if ‘it works’ or not. everyone is different and im actually still on steroids as steroids works for me (im storied sensitive) and also taking cyclosporin so for me, it’s a matter of time to know it has truly ‘worked’ or not. sorry that’s not much help but again, it’s a case by case situation.
Hi vendorxx.. How your sickness (pemphingus Vulgaris) right now.. Im a Pemphingus Vulgaris patient and now doctors gave me PredNilson and Imuran.. Its cleared at 1st stage.. But after i stop the medication cor two months its coming back.
Oh wow looks like we’re on the same boat!!! Pemphigus Vulgaris sucks. I’m getting my first rituximab infusions on March 13th, 2023 and I’m actually looking forward to it. Taking prednisone all the time also sucks.
@@juntakosan 🙋♀️Hi Jasmine from Austria 🇦🇹, Rituximab gives many patients worldwide great hope 🙏 Immun-Thrombopenia was diagnosed three months after my third COVID-vaccination in April 2022. Then my thrombos were only 55k. Since a half year I’m taking Prednisolon 2,5 mg daily which stabilized my thrombos at 50k. Additionally I have high Cardiolipid and Glucokorticoid Auto-immune-antibodies. Therefore and because Cortison is no permanent solution, I will start the Rituximab-therapy in one month. After the therapy I will report to you. ALL THE BEST TO ALL PATIENTS 🌸👏💐💗
![Eminem - Temporary (feat. Skylar Grey) [Official Music Video]](http://i.ytimg.com/vi/ZaK9Wi5ho0o/mqdefault.jpg)
I am diagnosed with bulleus pemfigoïd and I had rituximab. I had 8 infusions and I am free from prednisone and all other chemo medications. After 10 years I am free of medication it's really a miracle. The side effects were worth it.
The rituximab is my savior actually 🙏 I thought I would never get better and would die of an infection. I was in hospital with 42 Celsius fever because of my open wounds all over my body inside out horrible 😫
So you are in a total remission for 10 years?
Ameen
Thank you for sharing! I had my rituximab infusion 8.5 years ago and it was a bit of a different experience as I was fully admitted to the hospital for about 48 hours and the infusion was a very slow 24 hours. But despite initial worries and hesitations about side effects, it's been the best thing. No major relapses since! I hope rituximab gives you similar success!
thank you for watching! 👏 oh wow you’re so strong! 48 hours! I’m so happy to hear that you’ve not had any major relapses since, that makes me very happy! thank you!
@@JasminesJourney Hi, I had my rituxmab infusion 3 years ago and I'm feeling great, no relapse. Thank you for sharing your videos.
@@iabili Hi Ian! thanks for your message, that’s great news to hear you’ve not had a relapse for 3 years- that’s really brilliant! There’s hope for us all!
Thank you so much for these thoughtful and positive videos! I am starting a 4 week Rituximab infusion course on Monday and was a bit worried. Not so much anymore! This video and your positive attitude really helped. Can't thank you enough. Stay well!
Stay hopeful it will help
How did it go? Well?
I have been going for Rituximab infusions for 2 years, now 6 months spaced apart. The infusions have worked wonders for me. Your video was really informative for first time patients but I had a little chuckle how you packed for this infusion 😂. I only brought a snack, water and my iPad. Good luck with your journey, hoping these treatments are successful for you ❤
How are you now
Thank you for your video, Jasmine.
I am 65 and had my first Rituximab infusion almost two weeks ago for R.A., and Sjogrens. I will be having my second one in a few days.
It has been a pleasure watching your video.
Sending my best from the High Desert of Central Oregon, USA
Hi, great informative video, I've been on Ritux for a couple of years now for inflammatory Arthritis. In my trust i have to get my ritux over 6hrs; all depending on how busy they are getting my pre meds done i can usually leave around 1730 in afternoon after 8:00 am start. Its such a loooong day and while its just sitting down all day it can be really tiring. I dont know about yourself but the only real side effects I get is for around 3 days after I feel a little washed out and under the weather but nothing that isn't managed with rest and a good boxset with chocolate.
wishing you well, keep smiling 😊
Thank you for posting your experiences, Jasmine. This video helped me a lot! And I share it often when I meet people online who are nervous about Rituximab and what to expect. I really appreciate that you took the time to make and post this video and others about this treatment.
Hope you are doing well. Thank you for sharing your journey. Mother of a nephrotic warrior!
thank you! you too! you’re so strong 💪 all best to you and your warrior! 💚
Even my 2 year child is suffering from nephrotic
@@JasminesJourney mam I have 3time injection retuxmab my biopsy report fsgs tip varint can cure
thank you so much for uploading this!! I am 15 and have lupus nephritis. I am starting my 2 year rituximab infusion next Wednesday and I am feeling very nervous and scared but this helped a lot
How did you get on? I kinda opposite from you as in OLD but never the less still terrified of needles.
A lot less stressed after watching your video. I have my first session in 2 weeks. Thanks for the post
I came across your videos trying to see what to expect. I have my first Rituximab infusion on Monday, August 2nd. I am extremely nervous to say the least as I have had bad reactions in one way or another with all the medications I have tried. This is kind of like my last hope. I do not have nephrotic syndrome and am kind of a medical mystery or so I have been told. Basically my inflammation is 6 times higher than what is normal. It is affecting my organ systems now. I also have joint stiffness, incredible swelling. On the other hand, I see a Hematologist Oncologist because my blood markers lean towards a B cell cancer, like lymphoma, multiple myeloma. They both agree, Rheumatologist and Hematologist, that this is the best course to try now. I am going to ask them to put it at super slow speed at first, I have plenty of time...lol. Again thank you for sharing your journey with us. Prayers for good health.
Hi there - I have a similar medical issue. I am starting rituximab next week. If you don’t mind me asking - did the treatment help?
Thank you so much for taking the time and effort to make these videos for us.
edit) personally have had about 2 infusions and they have worked very well for me and stopped me from relapsing.
thank you for watching! I really appreciate that too! oh wow that’s amazing and gives me so much hope!
you're really lucky. i've had so many infusions and they never work
How are you now
I know my comment is super late but I am a 14 year old with the same condition and I had it since the age of 3. But I am finally starting Rituximab on the 17th. Your videos are so relatable and make me feel a lot more at ease. I am going to now binge your videos and sub.
never too late! best of luck with your Rituximab, I hope everything goes well for you! glad you feel you can relate- you’re never alone in this journey!
@@JasminesJourney wow this means a lot.
@@sri0230how are you now?
@@Littlerockjw Omg, things went to shit basically, um so Rituximab gave me 9 months of relapse free life, then the relapse that followed had me hospitalized because I temporarily became steroid resistant and developed a clot so they tried to infuse second round of Rituximab and I had an allergic reaction. Since then I have been taking a combination of tacrolimus and steroids (prednisone) during relapses, and I think over the last year I have developed steroid dependency and can't get off steroids for more than a week.
I’m actually 24 years old and I’m about to have this infusion. March 4th of this year
wishing you all the well wishes!
@JaiRocca ---How are you now? I'm going to take this infusion soon.
@@JasminesJourney Thank you for posting your videos which helps better understand our treatments.
How you now?
Hi Jasmine! I feel you are a UK version of me! I am from the US and your story is very similar to mine. There is talk about me getting Rituxamab within the next month so it was really cool to see you vlog about your experience. Hope you are still going strong! Much love and shout out to you, you are awesome 😊
hello! yay NS sisters! wow what a journey! I think it’s important to put this information out on video as I was definitely very scared before treatment but turns out everything was good 😌 big love your way!
Oh my gosh me too. I have mcd and im starting rituxamab in one week. I love her videos 🤍🤍
@@toriburt2582 what's your update? U good now?
Thankyou for your insight. I'm 50 and a bit scared I'm 6'2" 150kg skinhead and I feel like a kid before the dentist. My Ritux appointment is #1 tomorrow morning.
I feel a bit more at ease thanx to you.
Membranous Nephropathy is stripping me of 2/3s of my bodies protein and as a result my cholesterol is high so on warfrin also.
Thanx again x
You’ll be absolutely fine! You’re in safe hands 🙌 Wishing you the best for your treatment!
I had my 1st Rituximab treatment yesterday (55 y/o male). 1000mg, it took 6 hrs ~ no big issues. This vid popped up in my feed today. The Matrix is working well. I did experience dry mouth. That was it. it sounds like my journey aligned well to yours. Up at 4am went to treatment, went to bed about 9pm. Here it is on day after treatment, and I feel better than usual.
Their are any side effects of rituximab?
@@nishit1506 I did not have any bad side effects but there are some known. I started low dose and bumped it up after 2 months. You can't stop cold turkey either 9so I am told anyway)
Thanks so much for posting this. It really helped me prepare and get through my infusions.
best of luck and we’ll wishes for your infusion!
I will be starting this medication soon for Inflammatory Rheumatoid Arthritis, I pray I get some relief. 🙏🏾🙏🏾🙏🏾
Be strong it will be helpful but you feel really tired for a while
I had my infusion last week and have another one next week . I am hoping to feel better . I was diagnosed with RA post delivery of my child.
@@Anshu1904 Unfortunately for me, the medication didn't work. I have since started a new one.
@@Anshu1904I was diagnosed with lupus and RA and last week my doctor suggested me try Rituximab. How do you feel during and after treatment?
about to have my 12 th course (13 years) of rituximab,if my infusion is too fast i have similar reactions to yours,also tried truxima a substitute biologic,but reacted a fair bit...despite that most infusions go smoothly and rituximab is a life changer for Rheumatoid
Thank you for sharing this ❤
I'll have my first infusuon for prednisone dependent FSGS next week.
Hopefully it will be ok.
Wish you all the best!
How are you now is the rituximab worked for u
So in like 2 weeks i have to have this same infusion and im honestly so terrified because I don’t know what to expect and I’ve already had an allergic reaction to a different medication im more worried about after the infusion and how i will feel I just hope everything goes well thank you for your video hopefully it helps with my anxiety a little
How are you now? I'm getting ready to take this infusion. I care. Did you have any problems? Did you improve? Do you have any advice? Thank you for a reply.
Hey Jasmine, thanks for sharing this.
I’ve been strongly encouraged to try this treatment by my doctor for the past 4 years to help treat my myositis (autoimmune disease). I’ve taken all the protocol medications that are used to treat my disease (steroids, methotrexate, mycophenolate, IVIG) and while they have been effective at controlling my disease for a good while, I would eventually have a flare-up and go back to ‘active disease’.
I was hesitant about trying Rituximab because of some of the side effects - short and long term- that I read about.
Recently though, I’ve becoming more open to taking it. Your video and experience has helped reassure me in finally deciding to take it in the near-future.
Of course, everyone’s body is different and will have different responses to treatments like these. But seeing how you’re younger and seemed to have responded overall well to it, it gives me more optimism that I’ll be alright in taking it.
I did have a question: is rituximab a type of chemo-therapy, or is it more of an antibody infusion?
Thanks again. Keep up the positive attitude!
Hi Mau. I'm also diagnosed with Myositis! I just started Cellcept (Mycophenolate) and I'm on Prednisone. My doctor thinks Rituximab would help me a lot. Have you eventually tried it? If not, how are you coping atm?
@@waiyeeluvsluther Hey!
I’ve been through the same medications as you, actually. Was taking Cellcept for a few months but it wasn’t enough to control my flare up. I did eventually try Rituximab (Rituxian) and I can confidently say it has yielded really great results.
I took it back in August and it took about 3-4 months to fully take effect, but it has been worth the wait. My strength has greatly improved where I mostly had weakness and I’m able to do more physically demanding things.
I’m still taking Methotrexate as a precaution to help keep the disease in remission for longer, but that’s about the only other medication I’m currently on.
There haven’t been any side effects in my case, thankfully. Rtx does eliminate b-cells, so it makes you more vulnerable to some sickness. But it’s nothing that can’t be dealt with if you’re doing your best to take care of your health (eating well, good hygiene, seeing your drs when needed, resting, etc.)
Again, I highly recommend it. I was desperate for anything that would work because I was in a really rough spot with my myositis. This seemed to do it for me and I would take it again if needed. If you’re down on your options and your medical team has advised that it’s safe for you to take Rtx, I would give it a go.
I know this was a long post, but I hope it cleared some things up!
@@mau4604 can u share your number or mail...
@@mau4604 - Did you have any ILD as part of myositis? Did the medication improve your ILD symptoms?
@@mau4604 I hope this comment finds you well ❤. If you dont mind can you tell me your age and Is there any improvement in muscle strength after taking retuximab? Are you able to climb stairs and get up easily from chairs 🪑 .?(Since my father is suffering from same disease). Please reply it would be helpful for me
Off to hospital today for my first. Thank you for sharing x
Thanks for putting my mind to rest Jasmine! I'm getting my 1st infusion in less than a week and not sure what to expect. I'm also very concerned about the period after the treatment when the immune system is low. How do you go about life without catching viruses and infections? Especially at a time like this with Covid. I hope you're doing well!
How did your treatment go in the end? Were you ok afterwards?
@@kirs1064 yes. Thanks for asking. No major side effects. However 6 months later I still haven't seen any improvement yet.
@@chrisoiivotos4626 is there any improvement in your nephrotic syndrome condition
Thanks for sharing. I am trying to understand what to expect.
What an absolutely awesome and informative video. Thank you!! I’m having Rituximab mid June. Hope your feeling well after the treatment. All the best. Liked and Subscribed 👍🙏
thanks so much for you lovely comment and for subscribing! I was pretty sceptical but all turned out fine in the end! Still on prednisolone so only time will tell still if this treatment has somewhat ‘worked’ but all in all I feel great! all best for your treatment!
@@JasminesJourney Thanks for the reply 🙂 I’m also on Prednisone, but I’ve got a different condition to yourself. I was diagnosed with MS in 2013, but they no longer think it’s that, they think it’s now something called Neuromyelitis Optica (NMO) another sinister Auto Immune disease.
Like yourself, I document my progress with videos on my channel.
The hope is Rituximab will suppress my immune system and stop it from attacking my spinal cord, leading to reduced inflammation and hopefully some healing. A little bit of improved quality of life would be nice.
I’m going to check out some more of your videos soon. And, I look forward to your next one. All the best.
Do you mind me asking what dosage of prednisolone you’re on? I’m currently down to 10mg! oh wow 😯 do you know if you’ll have to have a biopsy to determine what up?
just subbed to your channel!
I’m also hoping that Rituximab has worked out for me, but of course won’t know until I come off the prednisolone- it’s all a waiting game!
Hope you’re keeping as well as can be, hopefully I can get some content up soon! 🙏😆
@@JasminesJourney Hi Jasmine .. I started Pred on a high dose of 40mg! This was back in Nov 2019 and this continued for about a year until I just got sick and tired of the side effects. I'm now down to 25mg, but I'm hoping to reduce this further once I've had the Rituximab in mid June.
I won't be having a biopsy as they're pretty sure I have NMO. In fact, I spent 1hr 15mins in an MRI scanner Tuesday morning (18th May), the appointment came unexpected and out of the blue, so I'm interested to know the results.
Thanks so much for the sub!!
Yes indeed, it's all a waiting game isn't it. I understand Rituximab take a few weeks to kick in properly and be effective.
Good to hear from you, take care.
Such an informative video. Has the infusion caused hairloss too ?
All the best... thanks for sharing. Keep the warrior spirit.. Cheers mate.
you too! thank you for the support! keep well!
I was diagnosed with multiple sclerosis 2 months ago and i have been given steroid. Now im on my first infusion of rituximab. Hoping that this will work for my brain.
I has been diagnosed by multiple sclerosis for past 7 years dude
I remember when I first started rituximab I had a bad reaction to it. Shortness of breath really itchy skin and Red patches all over my body
oh wow sorry to hear that! I’m hoping next time i don’t have the same allergic reaction as last time!
Did they also stop your infusions to give you more preventative meds? How long did it last? Thank you! I have this on Monday so just looking how others did.
My grandbaby is 6 she going have her first infuzion 25th im so scard for her hope u get well will 🙏 for u good luck dee
I have Lupus and ITP. Starting Rituxan next week for the first time. Hopefully, this helps
I m always tired after injecting Retuximab 500mg about 2weeks minimum
I have iga vasculitis and I start this treatment on Friday and this has really helped ease some anxiety! Thank you ☺️
Any updates?
@jasmine bolton flynn ---Hello. How are you now? I'm getting ready to take Rituximab for vasculitis. Did it help you? How many infusions did you need? How long did it take to work? What things got better? I care. Thank you for replying.
Any update?
🙋♀️Hi from Austria 🇦🇹,
Thanks to you; your experience gives many patients worldwide great hope 🙏
Immun-Thrombopenia was diagnosed three months after my third COVID-vaccination in April 2022 with Confirmaty.
Then my thrombos were only 55k. Since a half year I’m taking Prednisolon 2,5 mg daily which stabilized
my thrombos at 50k. Additionally I have high Cardiolipid and ß2-Glucokorticoid Auto-immune-antibodies.
Therefore and because Cortison is no permanent solution, I will start the Rituximab-therapy in one month.
After the therapy I will report to you.
ALL THE BEST TO ALL PATIENTS 🌸👏💐💗
What happened with you? Are you fine now?
@@IitianIshant
Yes, thanks to RITUXIMAB-Infusions
Merry Christmas ☃️🎄❄️
Hello Jamine how are you doing now ? Started following you on RUclips . Been diagnosed with MCD last August . Just had my first relapse been on 5 mg prednisone . Can i ask you when your doctor ask you to start doing Rituximab Infusion . ? Wait for your reply many thanks
When was second dose administrated? In a week? Or within days? Thanks.
I did my Rituxan treatments back on November 17 and December 1. Thank you for sharing!!
oh wow! incredible! so strong! my pleasure!
How are you now?
I have rheumatoid arthritis. i live in turkey and i use mabthera medicine in turkey. , but I had pain, do you have pain too? sorry my english is not very good
Hey dear my daughter is going to take Rituximab first infusion for the serious type of autoimmune disease Lupus,can u please tell me can this infusion have any serious type of reaction ?? Can you feel any reaction during or after the infusion?? Pls tell me dear,I'm very much about it ?? Because my daughter is very small
Hi,
Very optimistic video,
I got relapse of nephrotic syndrome,
Doctor is suggesting to go for RITUXIMAB infusion as I cannot take steroids because it has already affected my bones.I am planning to go for it.
Can you please tell me how are you feeling these days and how is your immunity now?
Hey are u ok...did u have rituxn
My husband is suffering from protien loss. He had steroids but it didn't work. Dr. Adviced for Rixumab inj. Does it work ?
hello. I can’t really tell you if ‘it works’ or not. everyone is different and im actually still on steroids as steroids works for me (im storied sensitive) and also taking cyclosporin so for me, it’s a matter of time to know it has truly ‘worked’ or not. sorry that’s not much help but again, it’s a case by case situation.
@@JasminesJourney why both? I thought this was replaced for steroids.
@@tsehaymersha6547 because I’m still weaning off steroids- can’t just suddenly come off them 😊
Is like protein in the urine?
How are you feeling now? Did you continue with rituxan?
I will be having another round in April ☺️
@@JasminesJourney are you feeling better, any side effects?
@@vasilvasilev7938 been feeling better for a while now as I’m still on daily medication. No longer term side effects from rituximab for me.
@@JasminesJourney I'm glad for you, wish you luck with next doses!
Esque rituximab fait tomber les cheveux
Rituximab is also available as subcutanous infusion. It takes 10 minutes to admister
i also took twice 2x1000mg rituximab ( Mabthera) .i have pemphigus vulgaris.
Hi vendorxx.. How your sickness (pemphingus Vulgaris) right now.. Im a Pemphingus Vulgaris patient and now doctors gave me PredNilson and Imuran.. Its cleared at 1st stage.. But after i stop the medication cor two months its coming back.
Oh wow looks like we’re on the same boat!!! Pemphigus Vulgaris sucks. I’m getting my first rituximab infusions on March 13th, 2023 and I’m actually looking forward to it. Taking prednisone all the time also sucks.
@@juntakosan
🙋♀️Hi Jasmine from Austria 🇦🇹,
Rituximab gives many patients worldwide great hope 🙏
Immun-Thrombopenia was diagnosed three months after my third COVID-vaccination in April 2022.
Then my thrombos were only 55k. Since a half year I’m taking Prednisolon 2,5 mg daily which stabilized
my thrombos at 50k. Additionally I have high Cardiolipid and Glucokorticoid Auto-immune-antibodies.
Therefore and because Cortison is no permanent solution, I will start the Rituximab-therapy in one month.
After the therapy I will report to you.
ALL THE BEST TO ALL PATIENTS 🌸👏💐💗
I’m preparing to get my first rutiximab infusion for mucous membrane pemphigiod and I’m nervous. How has it worked for you?
@@juntakosan I’m preparing for my first rutiximab infusion for mucous membrane pemphigoid I’m nervous. How has it worked for you?