Multiple Sclerosis Community
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Avatar universal


I have been in Tsabri for over 7 years. I developed neuropathy in both feet and left leg stiffness last month. I tested positive for the virus 3 years ago. Last week u had to change sites back to where I started. The office claimed they could no longer give me my Tsabri. My blood work last week showed an increasing risk for pml lesion. I tried Tecfidera it  did not work for me. What could I take if I have to come off? I lead a very active lifestyle. Help!!!
12 Responses
6881121 tn?1392834388
Many people who come off of Tysabri have been put on Gilenya pills.  You would have to get checked first for heart issues, immunity to chicken pox and maybe one or two other things, and have an eye exam to rule out macular edema (swelling).  Then of course you have to get approval from insurance or proof that you could afford the pill.  Once that happens, you get scheduled for a 6 hour appointment for your first pill. They keep you on an EKG to watch for lowered heart rate.  Once all that is done, you are good to continue taking them daily.
1831849 tn?1383231992
Another alternative is Rituxan (rituximab). After 20 Tysabri infusions I converted to JC Virus +. I switched to Rituxan in October of last year. I have had no noticible progression of my MS and had no side effects from the Rituxan.

Rituxan is administer in 2 infusions that are two weeks apart. That's it for a year! Well in theory...At 6 months they start to monitor my CD19 level on a monthly basis. If it stays low the Rituxan is still working. I have had 2 checks and  so far so good! It's been 7 plus months since my infusion.

6881121 tn?1392834388
Rituxan also has a PML risk, however, unlike in RA patients, or MS patients on Tysabri, the risk for MS patients on it who are JCV+ is incredibly small. Like less than 1 in 10,000.
6881121 tn?1392834388
BTW, Rituxan is the only DMD my daughter has been on.  Had her's late Nov, with the second dose early December.  Her CD19 was still 0% this week, and she looked incredibly good during the neurologist exam.  Also, no new lesions, the "new" lesions from the fall of 2013 were smaller.  So, so far, we too like Rituxan.
Avatar universal
And there's also Aubagio, another pill, plus the traditional injectable CRABs--Copaxone, Rebif, Avonex and Betaseron, all of which have their pros and cons. Have you been on any of these? I'm glad you realize it's important to be on some kind of treatment.

382218 tn?1341185087
You don't say where you are....if in Canada or the UK there's also Lemtrada. I don't think it's approved in the US yet and I don't know about other countries. Some provinces in Canada are still in the process of getting it included in their respective 'catastrophic drug' programs. I understand that in the UK the NHS covers the cost.

Avatar universal
I just joined....what kind of MS do you have?
Avatar universal
Thank you everyone who posted answers! I really appreciate all suggestions.  I was switched from Avonex to Tysabri, I was tempted by having a once a month treatment vs an injection. Oh my hospital was enrolled in a Tysabri study!!! I am headed to the Cleveland clinic for an evaluation. I will check on rituxan. Thank you!!!
Avatar universal
I can't tell all of you how helpful the information posted has been. I schedule an appointment at the Cleveland Clinic. I live in Nashville, TN. I am from NY and have a neurologist there as well. I can't take Gilenya, I have eye issues. Has anyone changed their diet as a Dr Wahl has suggested? A friend sent me a video on her miraculous transformation. I have relapsing MS.
Avatar universal
Book by: Terry Wahls, M.D.
Title: The Wahls Protocol
572651 tn?1531002957
Hi Salsera, it looks like you have received lots of helpful information - as you can tell we are all so very different with our MS and the treatment.  Getting the fresh look at Cleveland Clinic is agreat idea.  

we have a few people here who have tried diet - just remember it might make you feel better but it doesn't cure MS.  Even Dr Wahl says her MS is still there.  The problem I have with going just with a special MS diet and giving up the drugs is nothing has been proven that diet works.  It is all anecdotal evidence.  Making that choice is serious, especially if you don't remain relapse free.  

Good luck at CC.
5112396 tn?1378021583
Being attentive to our diets and getting good amounts of exercise is important to *all* of us. Even the general public is well served by these things and will have fewer health complaints if they monitor their lifestyles. However, Dr Wahls has not uncovered a secret, nor has she cured her MS. She has, however, glommed onto a nice little money spinner for herself.

Perhaps it's not as cynical as all that, but the benefits of eating well is hardly earth-shattering news, and judging from her image on her current website versus candid photos on a google image search, it appears her miraculous transformation has more to do with heavy-handed photoshop than her "protocol".

Diet does not treat MS. It can aid in reducing certain symptoms, but it will do bupkis for the underlying disease process. Having optimum health outside of MS is fantastic and will make you feel more able to deal with the slings and arrows of this unpredictable illness, but I'm all about harnessing that *in addition to* the many evidence-based medical treatments available, NOT in lieu of.
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