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Rituximab for MS anyone?
Hi all.
I had a 3 month post flare follow-up appointment with MS specialist in Cincinnati today. Based on current symptoms and my history of progression with my spinal lesions, he thinks I might be a zero positive for NMO (Devices disease). The revised treatment plan for consideration is to consider Rituximab for off label use.
I'm wondering if anyone else is following this treatment plan and can offer any information.
Or, maybe someone knows where I can find information on its use for MS patients?
Thoughts, ideas, recommendations, suggestions, pennies and well wishes all appreciated...
I had a 3 month post flare follow-up appointment with MS specialist in Cincinnati today. Based on current symptoms and my history of progression with my spinal lesions, he thinks I might be a zero positive for NMO (Devices disease). The revised treatment plan for consideration is to consider Rituximab for off label use.
I'm wondering if anyone else is following this treatment plan and can offer any information.
Or, maybe someone knows where I can find information on its use for MS patients?
Thoughts, ideas, recommendations, suggestions, pennies and well wishes all appreciated...
Best Answer
I have several friends on it and they really like it. Most have them have been on most of the other DMDs. They like that they do not have to do anything daily or monthly. They have also seen improvement.
Alex
Alex
1 Comments
I just recently had the rituxan infusion for PRMS and it has helped alot. I would definitely recommend this before even bothering with other dmds. Im also a 30 year old male
Hi Oh- Welcome to the group.
Last Sunday I had Part 2 of my third round of Rituxan. I'm not sure what the doses were. I'll look and see if it's on my insurance paperwork.
I have not had any side effects and based on blood tests it seems to be working. I have not had any clinical issues either.
Kyle
Last Sunday I had Part 2 of my third round of Rituxan. I'm not sure what the doses were. I'll look and see if it's on my insurance paperwork.
I have not had any side effects and based on blood tests it seems to be working. I have not had any clinical issues either.
Kyle
Yesterday I had my first 2nd round of RITUXAN.
Meaning, my 1st dose was 500 mg, 2wks later came the 1000mg.
The 1000mg is what I had yesterday.
Looking foward to hopefully seeing only positive result.
Both times the in fusions ran 4 hours ( for me ) I had all the pre-meds.
I go back in 6 months.
Every persons is different be it MS, RA, LUPUS, CA.
Good luck to all and God bless.
Meaning, my 1st dose was 500 mg, 2wks later came the 1000mg.
The 1000mg is what I had yesterday.
Looking foward to hopefully seeing only positive result.
Both times the in fusions ran 4 hours ( for me ) I had all the pre-meds.
I go back in 6 months.
Every persons is different be it MS, RA, LUPUS, CA.
Good luck to all and God bless.
Thanks for the answer I guess I will start a new post. I like your two birds, one stone treatment, sorry you have both :(
I have not heard anyone suggest they only have 1000mg each round on this site anyway but you are using it off label. I have heard of people having the 1000mg on day 1 & again on day 15 but then not repeated for 12 months.
I am using it "on" label for my rheumatoid arthritis so I always have 1000mg on day 1 & 1000mg on day 15 then the same is repeated every 26 weeks. This is of course helping my MS so I'm lucky in that regard as I get it for free with RA.
I am not sure on this & I'm hoping someone else on Rituxan will chime in here but I think some folks are having blood testing to check the CD20 or CD19 & when they start to rise that is when the next dose is arranged. I do know that they have both of the doses though on the day 1 & day 15 as normal. CD20 is the substance that is attaching to your B Lymphocytes & so Rituxan's job is to destroy those but sometimes it destroys some of your B lymphocytes as well. These grow back so you do need to keep having infusions.
Rituxan has a long life really so it can stay in the body for up to two years once you're on regular treatments & it's in your system. According to the clinical trials for MS, Rituxan was administered at the day 1 & day 15 so I'd definitely be pushing for the full dosage. I know from personal experience that a single dose without the follow up dose did not have the desired effect on me. I had to have surgery at the time & they wanted me to leave off my 2nd dose in the round for a few months.
One of the Community Leaders "Kwaredorf" or Kyle is on Rituxan as well & I'm hoping he can assist you further. If your post gets missed by any chance please post a new question or type in "Bump" in this thread which will send this to the top of the questions again.
Please ask any questions you like as we are a really friendly bunch of knowledgeable people living with MS or who are going through the diagnostic process (aka limboland).
Take Care,
Karry.
I am using it "on" label for my rheumatoid arthritis so I always have 1000mg on day 1 & 1000mg on day 15 then the same is repeated every 26 weeks. This is of course helping my MS so I'm lucky in that regard as I get it for free with RA.
I am not sure on this & I'm hoping someone else on Rituxan will chime in here but I think some folks are having blood testing to check the CD20 or CD19 & when they start to rise that is when the next dose is arranged. I do know that they have both of the doses though on the day 1 & day 15 as normal. CD20 is the substance that is attaching to your B Lymphocytes & so Rituxan's job is to destroy those but sometimes it destroys some of your B lymphocytes as well. These grow back so you do need to keep having infusions.
Rituxan has a long life really so it can stay in the body for up to two years once you're on regular treatments & it's in your system. According to the clinical trials for MS, Rituxan was administered at the day 1 & day 15 so I'd definitely be pushing for the full dosage. I know from personal experience that a single dose without the follow up dose did not have the desired effect on me. I had to have surgery at the time & they wanted me to leave off my 2nd dose in the round for a few months.
One of the Community Leaders "Kwaredorf" or Kyle is on Rituxan as well & I'm hoping he can assist you further. If your post gets missed by any chance please post a new question or type in "Bump" in this thread which will send this to the top of the questions again.
Please ask any questions you like as we are a really friendly bunch of knowledgeable people living with MS or who are going through the diagnostic process (aka limboland).
Take Care,
Karry.
So when you get Rituximab you get both doses each time? My doctor reviewed this with me but said the two doses were for the first time only (I think) then after just 1000mg once.
They plan to monitor my blood to know when I need my next dose. Is this how you get it or are you on a set schedule?
Thanks, sorry for the confusion :)
They plan to monitor my blood to know when I need my next dose. Is this how you get it or are you on a set schedule?
Thanks, sorry for the confusion :)
Thank you very much! It is hard to find direct answers when a drug is used off label.
Take care :)
Take care :)
The Rituxan comes in 500mg packaged ampules only which have to be made up in a bag of saline fluid before administering. The dosage is typically 2 x 500mg ampules (or) 1000mg in a single dose for an infusion / treatment. This is the repeated again 14 days later exactly the same.
My prescription displays 2 x 500mg ampules = 1000mg dose as well as one repeat. I hope that makes sense :-)
Karry.
My prescription displays 2 x 500mg ampules = 1000mg dose as well as one repeat. I hope that makes sense :-)
Karry.
I am confused on the Rituxan dose for MS. Is it 1000mg per infusion or 500mg in two doses?
Thanks!
Thanks!
DD doctor was so pleased with yesterday's exam and leukocyte panels that she may not have her take her next Rituximabs at 6 month, but wait to see signs on the blood work (CD19), which might be as long as a year from the first two doses. DD also improved walking speed, balance, coordination and strength even since mid January.
I had Anaphylaxis the first time I had it & am given my infusions over 8 hours always now. I had not been given any premeds though (they forgot) so this was not a good start for me. I have always had some breathing problems but I am also an asthmatic.
I took Zyrtec for my last infusion a fortnight ago & for the first time ever I had no breathing difficulties. I still got all the other side effects though. I have to wonder if the Phenergan I have always taken wasn't doing the job for me & I'm hoping if this continues they can speed up the IV after 6 years of having it over 8 hours.
Did they give you the IVSM prior to the Rituximab? There is a protocol they have to follow with the running time of Rituximab so they should find a rate that your body is comfortable with in the long run. If I was you I would just have the Rituximab run slowly if it is stopping the heaviness in your chest. It's only given every 6 months anyway & I'm sure your wiping your infusion day off anyway. Most people improve with each infusion as well.
Also if the nurse left the IV running full throttle & you were not doing so well this can be remedied by kindly asking them to slow it down. Take a second dose of the Benadryl if that helps I always did. I have learnt to have a break of about 30 mins from my IV because amazingly things settle & don't usually start up again. There is a section on IRR or infusion related reactions with Rituximab during some trials & it recommends you take "time out" like this because it is very effective in many cases. It's worth a try if you are struggling.
Good luck with your second dose. I'm off to hospital this morning for my next dose. :-)
Karry.
I took Zyrtec for my last infusion a fortnight ago & for the first time ever I had no breathing difficulties. I still got all the other side effects though. I have to wonder if the Phenergan I have always taken wasn't doing the job for me & I'm hoping if this continues they can speed up the IV after 6 years of having it over 8 hours.
Did they give you the IVSM prior to the Rituximab? There is a protocol they have to follow with the running time of Rituximab so they should find a rate that your body is comfortable with in the long run. If I was you I would just have the Rituximab run slowly if it is stopping the heaviness in your chest. It's only given every 6 months anyway & I'm sure your wiping your infusion day off anyway. Most people improve with each infusion as well.
Also if the nurse left the IV running full throttle & you were not doing so well this can be remedied by kindly asking them to slow it down. Take a second dose of the Benadryl if that helps I always did. I have learnt to have a break of about 30 mins from my IV because amazingly things settle & don't usually start up again. There is a section on IRR or infusion related reactions with Rituximab during some trials & it recommends you take "time out" like this because it is very effective in many cases. It's worth a try if you are struggling.
Good luck with your second dose. I'm off to hospital this morning for my next dose. :-)
Karry.
Thanks for letting us know how it went. Be sure and keep your team in the loop if that doesn't go away. (Had to laugh at the full throttle comment. I've had a particular nurse take that approach to an IVSM infusion!)
The first infusion went okay. I'm paranoid about chest heaviness/tightness because I had the anaphylaxis reaction to Tysabri. I had heaviness in the beginning of the infusion and again near the end of the infusion. They gave me an additional 25mg of Benadryl in my iV to help ease the chest heaviness at the end.
I think the earlier meds they gave me wore off and that's why I started having the chest heaviness. The nurse messed up the infusion rate when she went to lunch and then opened it up full throttle when she got back.
They are going to keep me on a slow infusion instead of trying to bump me up. Fingers crossed the chest discomfort doesn't return for my next infusion.
I think the earlier meds they gave me wore off and that's why I started having the chest heaviness. The nurse messed up the infusion rate when she went to lunch and then opened it up full throttle when she got back.
They are going to keep me on a slow infusion instead of trying to bump me up. Fingers crossed the chest discomfort doesn't return for my next infusion.
Just wanted to add a congratulations on your approval!
I know I was able to finally start to properly process my diagnosis once I got on treatment and into the headspace of 'yes, this disease is going on, but I'm fighting back'.
It doesn't magically make everything rainbows and unicorns, but for me it went a long way towards coming to terms and moving to the next stage.
I know I was able to finally start to properly process my diagnosis once I got on treatment and into the headspace of 'yes, this disease is going on, but I'm fighting back'.
It doesn't magically make everything rainbows and unicorns, but for me it went a long way towards coming to terms and moving to the next stage.
My Cancer infusions are usually 8 hours at the hospital usually waiting. They have individual TVs but I am not TV fan. I have taken up knitting, am writing a book and I have Ipod. The music really helps. I also have a different friend take me. Its great to get caught up.
Alex
Alex
It is great news. I have to say I'm excited. This current flare hasn't hit it's stride yet and I'm waiting for what's next. I always wonder if my MS decides to act up because i missed a pill once in a while. If I'm on an infusion that does its thing without me having to remember to take a pill or do an injection and my MS still acts up... I'll know is not because I missed a pill once in a while.
The first time, expect closer to 6 hours, because they start at a very slow rate (50 mg/hr). The drip rate gets upped by 50% every half an hour. If you have any issues, they might have to slow or stop it while they re-medicate you, which could extend the time.
If you do not have issues, your next infusion should go quicker, as they will start it at a slightly higher rate. Because there were issues, DD, started at 50 mg/hr rate even on the second infusion. Let's see how they do this in May.
The nurses laughed when I sat and worked out the drip rates and timings during DD first infusion...I was bored and nervous, and I guess I wanted to see if my Paramedic training on drip rates was still working...it makes me nuts that today's RNs cannot do drip rate calculations, because they totally depend on the machines to work it out for them. I actually took a photo of my drip rate chart with my phone.
If you do not have issues, your next infusion should go quicker, as they will start it at a slightly higher rate. Because there were issues, DD, started at 50 mg/hr rate even on the second infusion. Let's see how they do this in May.
The nurses laughed when I sat and worked out the drip rates and timings during DD first infusion...I was bored and nervous, and I guess I wanted to see if my Paramedic training on drip rates was still working...it makes me nuts that today's RNs cannot do drip rate calculations, because they totally depend on the machines to work it out for them. I actually took a photo of my drip rate chart with my phone.
That's great news!
I've been on Rituximab for 6 years now. I have just had a dose this week. I was put on it for my RA & it has been life altering for me. To my surprise I found out this is also used in MS as well as lots of other autoimmune conditions so when I was dx'd I didn't have to worry about looking for a DMD for that. :-)
You may or may not be given a premed of IVSM but typically you will be given antihistamine & paracetamol. The IV is run at a slow rate initially & they will monitor your BP, HR, temp etc. If you have no problems then it should be completed in 4 hours in the future. I can only suggest that if you have any side effects during the infusion tell the nurses & this way they can prevent things from escalating.
I really only have good things to say about Rituximab. For me it's convenient & I get two conditions covered with the one DMD which is pretty cool.
Good luck for Thursday.
Karry.
I've been on Rituximab for 6 years now. I have just had a dose this week. I was put on it for my RA & it has been life altering for me. To my surprise I found out this is also used in MS as well as lots of other autoimmune conditions so when I was dx'd I didn't have to worry about looking for a DMD for that. :-)
You may or may not be given a premed of IVSM but typically you will be given antihistamine & paracetamol. The IV is run at a slow rate initially & they will monitor your BP, HR, temp etc. If you have no problems then it should be completed in 4 hours in the future. I can only suggest that if you have any side effects during the infusion tell the nurses & this way they can prevent things from escalating.
I really only have good things to say about Rituximab. For me it's convenient & I get two conditions covered with the one DMD which is pretty cool.
Good luck for Thursday.
Karry.
Rituxan approved. First infusion next Thursday.
He wants to treat me with Rituxan because he doesn't think the Tecfidera is working. I'm working on my second flare in 4 months. I started Tecfidera last August.
He wants to treat me with Rituxan because he doesn't think the Tecfidera is working. I'm working on my second flare in 4 months. I started Tecfidera last August.
Yes that does make sense. The presence of O-bands might be a good sign. Is he wanting to treat you with Rituximab because this treatment can be used for both MS and NMO. What's he officially treating you for?
Now that you are experiencing vision symptoms, and because your dx seems uncertain, if it were me I would probably see the neuro or a neuro-ophtha ASAP to examine you, possibly do a visual evoked potentials test, to try to help get to the bottom of this.
Mayo are world leaders in NMO research. Any chance you can go there or at least have them consult with your neuro?
Now that you are experiencing vision symptoms, and because your dx seems uncertain, if it were me I would probably see the neuro or a neuro-ophtha ASAP to examine you, possibly do a visual evoked potentials test, to try to help get to the bottom of this.
Mayo are world leaders in NMO research. Any chance you can go there or at least have them consult with your neuro?
I'm positive for o bands. Confirmed on initial LP and a subsequent LP in emergency room.
I took his statement to mean that even though my NMO antibody results were negative....I could technically be "positive" with a negative result.
I hope I didn't butcher that. Does that make sense?
I took his statement to mean that even though my NMO antibody results were negative....I could technically be "positive" with a negative result.
I hope I didn't butcher that. Does that make sense?
I've been on a Copaxone for about six years but am considering a change to Gilenya or Tysabri due to many changes on my MRI and new leg symptoms that leave me uneasy.
I seem to recall one of the possible follow ups to a neg NMO-IgG where NMO is still suspected is to do a LP if one was never done, or if previous results were neg for O-bands. If new LP still neg for O-bands, points more to NMO, if pos for O-bands, points more to MS? I'm not totally certain about this but might be worthwhile exploring.
I'm not familiar with the term "zero positive"? What does your neuro mean by that? Sorry, some days I'm a little less on the ball than others. :)
I seem to recall one of the possible follow ups to a neg NMO-IgG where NMO is still suspected is to do a LP if one was never done, or if previous results were neg for O-bands. If new LP still neg for O-bands, points more to NMO, if pos for O-bands, points more to MS? I'm not totally certain about this but might be worthwhile exploring.
I'm not familiar with the term "zero positive"? What does your neuro mean by that? Sorry, some days I'm a little less on the ball than others. :)
Hi doublevision...
They had me do the test last year after yet another MRI with even more enhancing spinal lesions. On that particular study, I had 3 new lesions 2 enhancing. The NMO antibody test was negative.
However, my new neuro thinks I could be a "zero positive" for Devics.
If they just based it on my spinal presentation and history, I'd say yes. But, I've never had any definite ON.
Granted....I believe I'm starting a flare now and wouldn't you know it... I've been having some vision issues?! Never having had ON before, I don't want to think that's the problem. My focus/acuity has been winking out in my right eye. I'm of the understanding the focus issues can be due to dry eyes. Considering I'm recently diagnosed with glaucoma and I'm on multiple drops per day....I want to chalk it up to dry eye....
But I'll be keeping a close "eye" on it.
Anyway, neuro said 30% of people with Devics disease tested negative which is another reason he wants to try me on the Rituxamab.
What DMD are you on now?
They had me do the test last year after yet another MRI with even more enhancing spinal lesions. On that particular study, I had 3 new lesions 2 enhancing. The NMO antibody test was negative.
However, my new neuro thinks I could be a "zero positive" for Devics.
If they just based it on my spinal presentation and history, I'd say yes. But, I've never had any definite ON.
Granted....I believe I'm starting a flare now and wouldn't you know it... I've been having some vision issues?! Never having had ON before, I don't want to think that's the problem. My focus/acuity has been winking out in my right eye. I'm of the understanding the focus issues can be due to dry eyes. Considering I'm recently diagnosed with glaucoma and I'm on multiple drops per day....I want to chalk it up to dry eye....
But I'll be keeping a close "eye" on it.
Anyway, neuro said 30% of people with Devics disease tested negative which is another reason he wants to try me on the Rituxamab.
What DMD are you on now?
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Different docs use different protocols, as it is off label there are no real rules. Some docs use infusions every 4 months, some 6 or 12. My doc says it depends on each case. I'm in the every 12 month group!
I have not had and relapses (I'm SPMS so that might not mean much) nor have I had any noticeable worsening of existing symptoms.
The trick with Rituxan can be getting insurance to pay for it. Often they balk because it's off label. My doc sent in the pre-authorization which was approved. Then, just to be sure, he billed them prior to my treatment. This was to make sure they would actually pay. They did and then I got my infusions!
So far so good for me, rituximab wise speakin' :-)
Kyle