first infusion (RRMS)

[Bender]

I wasn't but I didn't see the recommendation in any of the lit I saw for Rituxan.

[Bender]

To note for the record, I've had some low energy days this week, but not the full blown flu like symptoms. Additionally my body temp has been low every day this week, but it doesn't seem to be infection related (I haven't had my thyroid checked in forever and it is probably that)

[yammerschooner]

Hi all,

First off, sorry to be a little late on this update. I did get a second infusion of Rituximab in November.

The headline is no news, which given the circumstances I know I should take as good news. The symptoms I developed in the first half of 2012 are all still here, but no new symptoms or worsening since about July.

I rushed a little to get my second dose of Rituximab even though my relevant white blood cell counts were still in the desired low range, because I'd been having a chronic headache around my bad eye for more than a week in early November. My vision was not further affected at any point, so far as I could tell. (Hard to measure decline in an already-bad eye.) The chronic headache did go away eventually.

I tolerated the infusion as easily as last time-- totally loopy from the Benadryl, but feeling fine by dinner time. This is definitely the most tolerable DMD I've taken given the 6-month interval between doses. The second infusion was just as long however... 5-6 hours. Pack a lunch.

One of my big concerns with this drug was getting through the winter season of flu and upper respiratory infections with a compromised immune system. I've always been prone to getting sick in the winter. The winter isn't over yet, obviously, but I live in LA so the "worst" is over. (Meaning mostly, I'm through with my holiday visit to the Northeast.) I got a flu shot, obviously, and didn't develop flu. I did develop bronchitis, which is a little worse than usual for me. My nurse practitioner prescribed Amoxycillin even though the bad cough had only been around a few days and there was some indication I was already on the upswing. I guess the concern is a pneumonia risk. Whether or not the antibiotics were necessary, I recovered quickly after taking them. Overall, my healthy girlfriend has fared worse than me this season (she needed antibiotics too), so no complaints, though the conversation with the NP did open my eyes a bit more to the risks involved with Rituximab.

Just so Rituximab doesn't get all the credit, I should mention that since early-mid 2012 I've been much better about taking fish oils, D3, and B-12. I let myself lapse on LDN in November or so, however, and haven't picked it back up since.

[Thirtyone]

Hi,
My MS doctor would like to use rituxan with me, but the insurance company will NOT approve it. The doctor himself tried and spoke to the insurance company, but they will not cover it.

How did you, and anyone else reading this, get it covered?

[bspotts1]

yammer...thanks for the update. hope you get some positive results with the 2nd infusion. my wife had her 1st infusion about a month ago and, like you, sees no effect yet but we're not complaining and are expecting no miracles. she has not been sick at all...no adverse effects whatsoever. we figure we'll give it a 2 infusion trial (one year) and reevaluate from there...see what's new on the market by then and adjust accordingly. best of luck to you and keep us posted.

thirtyone...my wife was initially declined for rituxan too...as were about 6 others that her neuro had prescribed. up until about 6 months ago he was able to get patients approved but suddenly everybody is being denied. we were able to get financial assistance directly from Genentech. it was a long process...had to provide tax returns and all that but it worked out...at least for the 1st infusion and hopefully for the 2nd as well...assuming she does a 2nd one. maybe you could get some contact information from your neuro and give it a shot. good luck.

brad in sarasota

[Bender]

Hey Thirtyone.

when I was on United healthcare I had this problem and was expecting a big fight moving over to blue Cross, but for bluecross I didn't even need pre-approval for this.

If you can (and I know it's not possible sometimes) try to change your insurance, another company might have a better policy for you.


Also frankly, United seems to have no interest in helping anyone with any sort of chronic condition.

[Bender]

Some activity here, BTW, but according to what I've been told the rituxan really starts working in month 2-3... hopefully it will

I've had a lot of changes in my vision but none that passed the 24 hour mark (but it's like I can see my brain bubbling) also I am having either dropfoot or a really weird injury. Basically the night before last I went to bed fine, and woke up with a sprained ankle. It doeesn't seem swolen and I'm having more trouble than I normally do with a sprain controlling my foot, it is tender to the touch, but it's also pulling downward at the outside edge.

I'm waiting to see if it persists or not.

[Thirtyone]

I have BC/BS and they are the ones who are not allowing it.

Also, my doctor wants me to start the oral pill that will be approved in about a month disomething fumerate - I think the name is BG something.

Anyway - that would be in place of the rituxan.

thanks everyone for your answers.

[Lars]

Hi all,
So after a horrible experience with Tysabri, months of waiting for Rituxan approval, a terrible relapse, a course of Sulomedrol, I finally got my first infusion. All pretty much without issues but had a secondary relapse a few days later. Cant help but feel that there are way to many toxins in my system. 2nd infusion on Thursday.
Be well,
Lars

[Lars]

Thirtyone,
Genentec will approve off label Rituxan free of charge if your insurance wont cover it but there is a ton of effort involved and you must qualify financially.
Lars

[yammerschooner]

Just passing through this board again so I figured I'd give an update, though there's no real news.

I took a spill last week and injured my hand, so I won't type much. The fall was probably related to ongoing leg balance/stiffness/weakness issues, but I can't yet make a clear case, to myself or to a doctor, that my legs are worse than they have been since last July, the approximate end of my last relapse. I'm still walking my dog daily. So, ten months into rituximab, i should probably be seen as celebrating ~7 months relapse free. No improvement either, and I continue with the supplements noted above.

I get healthcare through Kaiser in CA. My neuro was resistant to putting me on rituximab, presumably b/c it was an off-label prescription. She had wanted to get me on the ocrelizumab trial instead. When I first suggested rituximab she was hostile to the idea, but I think she began to warm to it when I pointed her towards the frankly disgusting business coverage of why Genetech is pushing ocrelizumab instead of rituximab for MS. (http://neuroimmunology.wordpress.com/20 ... sclerosis/ , http://neuroimmunology.wordpress.com/20 ... sclerosis/.) Then when she put me on gilenya and my heart slowed to 30 bpm overnight in the telemetry ward of Kaiser Hospital, I think she finally felt guilty enough to prescribe me the best available drug, even if it was off-label. So probably not a path that others can hope to replicate in terms of getting access to the drug, but that's my story, take from it what you will.

[bspotts1]

thanks yammer for the update. my wife is now 2 1/2 months post first infusion and she too has noticed no improvement of symptoms....but, she's no worse either so that's good.

keep fighting the good fight.

brad

[LR1234]

Just checking in to see how u r doing x

[yammerschooner]

Hi everyone, creator of this thread here.

I got my fourth infusion of Rituxan and a new MRI earlier this month. The MRI, my first since last fall, shows no new or active lesions. Always good news when that happens.

While it's impossible in MS to say if your medication is working (after all, I could just be in remission), it seems likely that Rituxan is helping me. I had a very bad run from October 2011 to August 2012, during which I developed my first permanent symptoms and during which new symptoms developed every month or two. Almost all the symptoms I developed during that era are still with me (the last of the problems I developed, groin numbness, might have gone away.) But I haven't had any new symptoms since then. After 10 months of progressive clinical activity, the disease stopped. It seems rational to think that starting on Rituxan in May 2012 had something to do with that.

So obviously I have the good sense to look past my annoyance that these symptoms have stuck with me and be glad to be where I am. I "celebrated" 10 years since my dx this fall and am still walking and pass for a healthy person in public.

More points of interest:

-My doctor says her protocol is to give one more infusion, for a total of five or two calendar years, and after that to just monitor b-cell count. If b-cell count stays low, no additional infusions are necessary. Dr seems very excited about Rituxan, much more confident in it than she was in early 2012. Good vibe on this drug.

-However, I am moving (back) to Texas and will leave that doctor, going back to one I've been with before. He's a well-known MS specialist. I asked his nurse practitioner if it'd be a problem for me to get Rituximab from him and she said not at all... he has several patients on it. I was shopping for insurance on the exchanges and asked if I'd have trouble getting my insurance to approve Rituxan. She said no, it's just a matter of her filling out the appropriate paperwork. I've been through this enough to know it might be hearsay and not trust anything until I have the drip in my arm. But it's encouraging, it seems like Rituxan is more and more of a trend nationwide. To those who have been told that "their insurance wouldn't approve" Rituxan I'd advise pressing your Dr/NP on whether or not they took the time to fill out paperwork, and possibly trying a different doctor.

-I've had a cough a lot this winter but no bronchitis. No flu or notable infection. My only notable secondary symptom this year has been a ganglion cyst on my left ankle, probably caused by gait problems due to ongoing leg muscle weakness/stiffness.

-For those who want to know more about rituximab/ocrelizumab and the role of b-cells, this is the guy who's figuring it out http://en.wikipedia.org/wiki/Stephen_L._Hauser.

[bspotts1]

hi yammer,

glad to hear that rituxan seems to be working for you. good luck with the texas move and getting approved there. my wife received her 2nd infusion a few months ago. her ms is different than yours...she is 65, ppms, dx 4 years ago. like you, her last mri showed no new lesions so we are very pleased with that news also. was it the rituxan??? who knows but we're just happy that her ms seems to have stabilized. we have the same good vibe as you do...

continued good luck...

brad