Recently received 1st Treatment of Rituxan for MS

[WaveMS]

March 8th, 2016. I received my 1st of the two infusions scheduled at Kaiser.
I was also given a Steriod, and something to off set possible itchy throat reaction.

Right before The infusion, my doctor asked for another set of blood work and the infusion took approximately 4 hours, because I had very little reaction to the drug.

In fact, that same day- I attended a MS Society meeting to listen to several Doctors & scientist speak about Stem Cell research and it was a perfect venue to ask them their thoughts on me having The Rituxan Treatment. They all were in agreement with my Neuroligist suggestion, and I was thrilled that I had gone forward with this procedure.

Today, is 2 days post treatment, and I feel good. Unfortunately, I had pulled a muscle in my back which unfortunately has taken away a bit of my MoJoe..., but so far, so Good..!

[Scott1]

Hi,

I'm interested and impressed. How will they measure efficacy and what did they say they were targeting?

Regards,

[CureOrBust]

If I am reading the above right, this isn't a trial, but treatment. And welcome WaveMS

[WaveMS]

RITUXAN was FDA approved, and my treatment was not a Trial, but an actual Treatment.
There is another form of Rituxan in the works, which is supposed to be a bit easier accepting in the future.
However, I choose to proceed now and happy I did because I had little to no side effects.

My Neuroligist will likely have another MRI taken and have me do the same physical test's to compare.

We all can agree that we will know it before the doctors if anything we take or do helps, before they will know.

[Scott1]

Hi,

So the treatment is two infusions. Is it supposed to ablate the B cells at that dose or are they targeting something else?
Is there a link to patient guide to the treatment or a research paper that forms the basis of the treatment?

Regards,

[WaveMS]

My Treatment is Two (2) infusions scheduled two weeks apart.

From the reading I did, and asking questions, this I found to be the norm procedure.
I looked up RITUXAN on line & read their web site. I also did a bit of research reading on the Innernet, and sought other Neurologist input (which slightly varied, but for the most part agreed).

The week before the First treatment, I was nervous, a bit bewildered and really wanted to make the Best move.

I have had MS for 12 years, last couple years no change with MRI's. However I felt I was declining. I still am able to walk, however I have to mention It isn't something I enjoy, should mention I have Neuropathy in my feet (not due to anything - just do..!) I am able to continue to cycle...! Not as fast or hard as I have in the past, however I do participate in MS Society 100 mile Bike Ride.

My Neuroligist felt that my MS had shifted from Relasping Form to Progressed MS.
Which I felt I needed to mix it up and start shouting from the roof tops "I Need Help"!! I could feel my right leg getting weaker, and weaker.
Kaiser than shifted me to a MS Specialist, which within 2 months I was being given the option of this treatment. I have been taking Copaxone for 10 years, and I am VERY MUCH looking forward to Stem Cell Research to hopefully be THE BIG FIX..! Until then, I am very much a person that is willing to risk it, and take the plunge..! Quality is so much more important to me than quantity.
After speaking to several qualified Neuroligist & Scientist at UCI, I am now loading up on Vitamin A's, D's and I personally believe that even though I may Not want to exercise....I PUSH myself. I may not
Feel better tomorrow, so seize the day..!
Best of Health to You All....! Wave, Southern Calif.

[lyndacarol]

I am now loading up on Vitamin A's, D's

I assume you have had nutrient testing to establish your levels before starting supplementation. Too much vitamin A results in toxicity, which must be avoided.

With vitamin D, it is important to know the serum level to begin with – the dose varies from person to person (each person's serum level can change to a different level in response to the same dose).

[WaveMS]

Thank you for your input. I did have a ton of recent Starting point Test....which found I was running a bit high in B12, while a few others I was running low to below Low~~~~
So Thank you.
Taking care of ourself sis a Full Time Job, that is for sure..!

Wave

[CureOrBust]

I looked up RITUXAN on line & read their web site. I also did a bit of research reading on the Innernet, and sought other Neurologist input (which slightly varied, but for the most part agreed).

I just did a quick check of their website (http://www.rituxan.com), and was very surprised to see no info nor reference to MS; not even in their prescribing info!

I have had MS for 12 years, last couple years no change with MRI's.

Did you show any enhancing lesions? more specifically in the last MRI?

However I felt I was declining. I still am able to walk, however I have to mention It isn't something I enjoy, should mention I have Neuropathy in my feet (not due to anything - just do..!) I am able to continue to cycle...! Not as fast or hard as I have in the past, ...

I am very big on exercise, even though I hate it, and its difficult for me; I have an EDSS of about 4.5 by my guess. I use Ritalin (2x5mg quick release, 30 min before exercise) to help me push that much harder and also help actually getting the drive to do it (it does give a boost to energy but also swallowing the pills is a simple commitment to actually doing the exercise). I also use other non-prescription stuff like Phenylpiracetam & caffeine etc etc.

My Neuroligist felt that my MS had shifted from Relasping Form to Progressed MS.

I am assuming by "Progressed MS" you mean PPMS? From what I have read, RITUXAN is not that effective for PPMS (http://www.thisisms.com/forum/rituxan-r ... 27544.html), and also has limited effectiveness against SPMS. (http://www.ncbi.nlm.nih.gov/pubmed/23843952)

...I personally believe that even though I may Not want to exercise....I PUSH myself. I may not Feel better tomorrow, so seize the day..!

I too am big on exercise, though I hate it, so I would really suggest you look into Ritalin; with caution (tolerance builds up quickly so I suggest you start on half a 5mg tablet, and it is an addictive substance).

[WaveMS]

When you do your searches for Rituxan, be sure to add a comma followed with MS.
As this drug has been used for other issues.

Here is just a few of the many Web sites or articles I found on the Web.

http://www.webmd.com/multiple-sclerosis ... ise-for-ms

http://mymsaa.org/publications/msresearch-update-2015/

http://www.medpagetoday.com/MeetingCove ... RIMS/54060

This medication helps will restricting inflammation. After listening to several highly regarded Doctors talk about inflammation, T Cells, and MS........ I felt for ME, it was certainly worth the risks as I proceeded with the treatment.


I suggest talking to your Neuroligist, to see if this treatment may be a possibility.

[blvckvv]

@WaveMS are you a San Francisco Bay Area resident by any chance?

My neurologist and I have settled on Rituxan as a treatment plan and I hope to begin shortly. Glad to hear your experience starting the treatment was a positive one.