Hi! Just joining.

[pihokken]

I was diagnosed in 2001, but looking back, I had it since I was 20. I am 63, secondary progressive. My last MRI showed a new lesion. My neurologist wants to put me on Rituximab. Anyone have experience with it? Side effects?

[Minifinney]

Hello, I have been on Rituximab since May 2017. My second round six months later consisted of Ocrevus in which I was is “the cousin “of Rituximb. Although I don’t feel any better, and experienced some hair loss there are no new lesions.

[pihokken in reply to Minifinney]

That’s good news!

[Minifinney]

I have also had MS since 2001 and have been on many therapies. After stopping Avonex in 2011 everything went down hill. All oral medications wiped out my immune system and now it all seems to be trial and error.

[pihokken in reply to Minifinney]

Good luck!

[rlh1974 in reply to Minifinney]

Truly wish they had an unlike button.😠 I just hate hearing about people suffering!!!!

Rob

[Royjr]

Welcome

[pihokken in reply to Royjr]

Thank you!

[Jesmcd2 CommunityAmbassador]

Hi pihokken and Welcome!😊 We are so happy to have you here!💕

Have a seat ana cuppa Jo' ☕ and take a look around!😀 We have no more cookies 🍪 cause someone ( Doubled51 and Royjr and rlh1974 ) ate them all😐😊 😒

I'm sorry to hear about your new lesion.😕 I hate when that happens!😐 I truly hope it's not affecting you to badly? We are Always here to listen! 💕

Jes 🌠

[Royjr in reply to Jesmcd2]

And they was good too😀

[Doubled51 in reply to Jesmcd2]

Welcome pihokken . Jes is right. No cookie 🍪 or chocolate 🍫 is safe around me. 🤪😜

Donnie

[pihokken in reply to Doubled51]

Chocolate first, cookies second!

[pihokken in reply to Jesmcd2]

Thank you and you had me at cookies!

[Doubled51 in reply to pihokken]

I love them all.🤗🤗

Donnie

[rlh1974 in reply to Doubled51]

Did someone say cookies and chocolate!!?

[Doubled51 in reply to rlh1974]

rlh1974 . I think I’ve dued and gone to heaven. My wife just got home with a bag full of chocolate 🍫 and cookies 🍪. And 3 gallons of milk. ❤️❤️😂😂

Donnie

[rlh1974 in reply to Doubled51]

Doubled51 I would like you status..... but I didn't get invited.......... Just sayin'

BUWAHAHAHAHAHAHAHAHAHAHAHAHAHAHA!

[Doubled51 in reply to rlh1974]

Come on over got plenty. My wife went grocery shopping yesterday and being I had been a good boy the last few days and cleaned and washed clothes she stocked my goodies supply.🤪😜😇🍫🍪😂😅. And it’s mine all mine. Well most of it.😂😂😂

Donnie

[rlh1974 in reply to Jesmcd2]

Listen Jes! I saw you sneaking some cookies too!😝😂

[Jesmcd2 CommunityAmbassador in reply to rlh1974]

😐 did not.😌 😳 rlh1974 That's my story and I'm sticking to it!😄 Besides I saw CalfeeChick and pihokken over by them.😀 😊😐😆😅😆

J 🌠

[Fancy1959]

Hi pihokken, welcome to this incredible chat room from Fancy1959.I have never been on Rituxiab so I can't answer your initial questions. But I want to let you know you have found a safe place to come and ask questions, voice concerns, or simply speak to others who truly understand what you're going through. The people in this chat room are some of the most caring, compassionate, and kind people I have ever met. I look forward to getting to know you better so keep posting. The more you post the quicker we will get to know you and you in turn will get to know us. There is much we can learn from each other. Until we speak again please take care and remember that together we are stronger!

[pihokken in reply to Fancy1959]

Thank you so much!

[greaterexp]

I don’t take rituximab, but there are a handful here who have begun Ocrevus, which is closely related. You might search posts having that as a subject. I’ve read several posts which were very encouraging! We wish you well!

[pihokken in reply to greaterexp]

Thank you! Yes I have heard that Ocrevus is very close.

[LISAANNE0309]

Hi pihokken,

I am 60 and also have secondary progressive MS. I was diagnosed in 1992, but didn't start treatment for about 5 years. Then Copaxone, Methotrexate, Novantrone, Betaseron, Tecfidera, and now Rituximab. I have had 3 infusions of Rituximab with no side effects. They had to slow down the last infusion because my throat started to tickle (worries about an allergic reaction). I had high hopes of symptom improvement, but there have been no big changes. No worsening and maybe a bit better. Tests show the Rituxan did what it was supposed to do. It wiped out the B-cells. I'm due for another infusion in April, but don't know what my doctor will recommend.

[pihokken in reply to LISAANNE0309]

Thank you for answering. You are making me feel better about the switch. I’m on methotrexate now. I went 4 years holding even on it. I figure that was a good run! Was yours injected in the spine?

I started on Avonex, then rebif, betaseron, novantrone and then the methotrexate.

[LISAANNE0309 in reply to pihokken]

Hi pihokken, I took oral methotrexate for about 6 months. But developed horrible mouth sores. I was traveling overseas at the time and my doctor told me to stop taking the MTX. Never resumed it. I had progressive disease until 2011. In 2009 I started using a power chair. I changed neurologists and the new one started me on high dose vitamin D. My symptoms improved and I had been completely stable until last year when I experienced increased spasticity and weakness. Steroids didn’t help and so I started rituximab. I had high expectations of improvement. A fleeting thought of losing the power chair. Not so. And should have looked for subtle changes. As long as I don’t progress.

[pihokken in reply to LISAANNE0309]

And that’s what we will bank on - no progression! Thank you!

[kdali]

Welcome! 🎉

[Kitsey]

Hi pihokken! I too am 63 and was “officially “ diagnosed with SPMS in 2014. Like you, I most likely started with RRMS inn my late 20s. I had bilateral optic neuritis then. I didn’t understand what my occasional drop foot meant. The only treatment I have used is Rituxan. I have 2 sets of infusions each year. Each set consists of 2 infusions 2 weeks apart.

During the first infusion I had minor reactions. I had an itchy throat and a headache. Both were gone within 30 minutes and they never returned! I receive benedril and Tylenol before the infusion and always have a nice nap. After the first round, I drove myself to the infusions. The distance was 90 minutes each way on busy highways. I really felt fine.

Rituxan has done exactly what we hoped in reducing the disease progression. I haven’t had any new lesions!!

I wish you the very best and hope that you will have great results. Please keep us posted.

Kitsey

[pihokken in reply to Kitsey]

Thank you Kitsey! You are making feel much better about this. It’s good to know I will be able to drive myself after I see how I react to the first one....

[rlh1974]

Why are we always getting blamed!?😂😂😂😉 That being said welcome aboard @ pihokken! This is absolutely the best support group around in our little twisted way! You won’t find a better place to share you downs and ups and everything in between! I look forward to getting to know you!

Rob

[pihokken in reply to rlh1974]

Thank you!

[MS_Indestructible]

Welcome, I've been on most of the DMTs of injectables, non of the new oral DMTs. I was last on Avonex for 2 years before the side affects were no longer worth the benefit. New neuro put me on Rituxan therapy, once every 6 months. Has worked wonders. no side affects, no new lesions, and best choice a doctor has ever suggested. I always look forward to my next infusion. I usually get a great nights sleep afterwards and feel great when I wake. If you doctor suggests it, try it. I'm glad I did. Been on it a couple of years now and hope to stay on it a long as I can.

[pihokken in reply to MS_Indestructible]

Thank you! That really helped...