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  #21  
Old 09-25-2016, 04:03 PM
teena marie teena marie is offline
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I had my annual neurologist appointment. It went well with a diagnosis of stable MS. So I will hold off on any meds for now, just go back on Biotin.

Teena Marie
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  #22  
Old 09-26-2016, 03:25 PM
Suebee Suebee is offline
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Great news, TM!!!
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  #23  
Old 12-29-2016, 09:45 PM
MSLazarus MSLazarus is offline
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Default Still on rituxan and doing well

I still do two infusions every six months. I have been doing really well and have been actively farming and working in my greenhouses.

I just wanted to mention that my MRIs almost never show enhanced lesions. Yet my MS was and is progressing. Some people with lesions that show up bright on an MRI do not have corresponding symptoms. So, I do not try to figure them out. I think there were dozens of lesions on my first MRI which was almost 30 years ago. Then just a few each time and almost never for the last ten years. But my MS marches on with a drumbeat of symptoms....

A year ago I developed esophageal spasms. That has become one that has rolled itself into the whole ball of my symptoms and causes a lot of trouble. Progress does not always equate to MRI lesions.
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  #24  
Old 03-23-2017, 07:10 PM
AMFADVENTURES AMFADVENTURES is online now
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Hey Linda, I am wondering if you're thinking the Rituxan is becoming less effective for you? You've been on it longer than I have and at a consistently higher dose.

I am due for a Rituxan infusion now HOWEVER... I had a major setback last november, a severe flair up of diverticulitis which resulted in emergency surgery. The diverticulitis preceeded the Rituxan but had not ever been noticeable until after I began the Rituxan therapy.

When I talked with my neuro about this he initially didn't think there was a correlation but said he would research it further, which he did. Apparently there is some evidence in people with rhumatoid arthritis who use similar dosages of Rituxan which does indicate a possible connection. He offered me two choices. One, I could discontinue the Rituxan or two, I can continue the single dose infusions based on the results of blood tests specific to the immune cells the Rituxan targets. He thought this could stretch the period between infusions to as much as 9 months thereby limiting the possible agrivation of the diverticulitis.

I chose option two because, as near as I can tell, there has been little or no progression of my MS since at least the second Rituxan infusion. I got through the surgery and recovery from the diverticulitis with no noticeable increase in MS symptoms. Also, I have a better idea of what to look for now in the event the diverticulitis does begin to flair up again. So now, when my blood tests indicate my immune system is beginning to replace the targeted immune cells, I will get another Rituxan infusion.

With respect to my MS, I feel better right now than I have for many, many years, possibly a decade or so. However, one other thing worth mentioning here is, as a result of the surgery for the diverticulitis, I was given a high dose of some pretty potent antibiotics over a period of a couple of weeks. This could be important because there are studies which indicate that certain antibiotics might be effective against MS. The next time I talk to my neuro I'll ask about this.

All the best,

Larry
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  #25  
Old 03-24-2017, 06:58 AM
MSLazarus MSLazarus is offline
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Default Hmmmm.....

My neuro would say "hmmmm" so that is what I said.. I know it is tempting to see cause and effect all around us. But, in the many years I have been dealing with MS I have learned....

Anyway, the rituxan is still all important to my functioning. I had a rough spell this winter but still functioned. I attribute that to the rituxan. When I am near the end of a cycle I am chomping at the bit for the next infusion. It does seem to restore my abilities.

I used to do infusions every 8 or 9 months but now do them every 6 months. Stretching to the 9 months left me with too much down time.

I hope you find a solution...I am still farming and am active in the world. I just have to plan my schedule and plan and plan. Not as much fun but working!
Linda
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  #26  
Old 03-30-2017, 04:14 PM
AMFADVENTURES AMFADVENTURES is online now
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Hmmmmm, well, of course you're absolutely right Linda, the antibiotics were a big hmmmm factor. Nevertheless it might be something to keep an eye out for. After all, a number of the current MS therapies were discovered serendipitously! And there are studies around that have indicated positive outcomes using antibiotics on MS. Personally, I am anxiously awaiting this year's ECTRIMS conference and will be particularly tuned into studies involving antibiotics.

On another note, in an earlier post I questioned the ommision of Rituximab on the new NMSS web site. Well I am happy to report NMSS is off my sh*t list now. They have updated the Web site to include a number of off label medications for people with MS, including Rituxan. They also revised and expanded their position on medical Marijuana. Kudos NMSS. If you'd like to see the revisions, they are here:
Rituxan http://www.nationalmssociety.org/Tre...r-MS-off-label
Marijuana http://www.nationalmssociety.org/Tre...ines/Marijuana
Larry
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  #27  
Old 03-31-2017, 07:23 AM
MSLazarus MSLazarus is offline
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Default Rituximab vs. ocrelizumab

Rituximab is Ocrelizumab
This is an article I copied. I am not the person writing it but it echoes what my doc said to me 2 years ago. My insurances pay for rituxan infusions but the cost at the infusion center is about $35,000.00. Every 6 months.


"The patent on Rituximab expired in the US in 2015. Basically when they were doing the clinical trials with multiple sclerosis by the time they were up to phase III the patent would have expired.

No patent=no profit.

So Genetech started inventing a new drug. The biggest difference is that Rituximab is a chimeric antibody, a genetically engineered antibody. Ocrelizumab is a humanized antibody, antibodies from non-human species, whose protein sequences have been modified to be similar to those found naturally in humans. Otherwise Ocrelizumab is basically the child to Rituximab. Being that Ocrelizumab is humanized antibody, the hope was improved safety and reduced infusion reactions. What actually happened is it turned out that Ocrelizumab was LESS safe. In 2010 trials on Ocrelizumab for Lupus and Rheumatoid Arthritis had to be abandoned because of an unacceptable number of serious and sometimes fatal infections. Ocrelizumab is almost identical to that of Rituximab (except for the way the antibodies are created, chimeric versus humanized) which has been used for decades to treat cancers of the blood and for 7-8 years off label basis for treating multiple sclerosis. Rituximab is pretty safe, a good drug therapy, and has a large data history and experience. It isn’t cleared for multiple sclerosis use because of pharmaceutical profit lines not seeing it to the phase III clinical trial. Therefore some insurance companies will DENY the use of the safer Rituximab but approve the still to see Ocrelizumab when it actually is released. THEY ARE BASICALLY THE SAME DRUG. However FDA can’t approve Rituximab for multiple sclerosis without phase III. No phase III because of $$$$$$$$$$. We the patients are left with the choice what do we do, what can we do?

I was denied by my insurance for Rituximab and denied 2 appeals and even took the appeal to the state level and was denied (I have state insurance). I finally got into the patient assistance program from Genetech and am able to receive Rituximab (pays to be poor). However this was also because Ocrelizumab was not out yet. It was supposed to be released January 2017 but was once again push back. There is a very good possible I may have to go to the Ocrelizumab which my insurance would pick up, because it was FDA approved for multiple sclerosis, but if prefer to stay with Rituximab. I’d rather be on a drug that there is a well known history on, not one pulled from the shelf many times. Anyway just wanted the truth out there, I’m tired of seeing these promised articles everywhere when this drug really isn’t “NEW”."

Last edited by MSLazarus; 03-31-2017 at 07:29 AM.
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  #28  
Old 04-02-2017, 02:31 PM
Suebee Suebee is offline
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MSLazurus,
Thank you for posting info about off Label rituximab vs. FDA approved cousin. Issues with FDA approval and BIG Pharm greed is, so disheartening.
But I think, proof is in the data, and scientists have tried to justify rituximab's off label use in MS. Here is link to I what think is the most recent largest retro-study of MS patients on rituximab, demonstrating safe and effective for MS patients.
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5109942/

I post awhile back about the Cleveland Clinic's use of Rixtuximab off label for MS. The Clinic has kept it's information flyer about using it for MS on its website. Here is link https://my.clevelandclinic.org/ccf/m...heet.pdf?la=en
One quiver in our arsenal against MS and big pharma & insurers' greed.....
Good luck.

Last edited by Suebee; 04-02-2017 at 02:42 PM. Reason: spelling errors, opps
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  #29  
Old 04-02-2017, 07:47 PM
MSLazarus MSLazarus is offline
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Default Go to wheelchair kamakazee? site...

He has a very good analysis of the difference between rituximab and ocrelizumab.

If you can not find it I will find the link for you.
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  #30  
Old 05-30-2017, 05:35 PM
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I talked to my neuro about this, and he is a pretty smart dude and leading researcher. He said the two are essentially the same drug, only Ocrevus might have fewer allergic reactions since it is humanized. I didn't have any issues with my second infusion, so we might stay on Rituxan. It's cheaper for the insurance company, too, although Ocrevus is aggressively priced.
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