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Thread: Taken off Ocrevus- now what?

  1. #11
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    Cruiser, I am just kind of thinking out loud here. I don't know anything, but I was thinking that if you are stable enough to just hang in there until everything is back to normal with your WBC and B cells back up within a normal range and then gradually try something like Rebif, would that be a possibility? I am not saying that it is a panacea but I have been on it since it was introduced in the states in 2002. I was on Avonex for a year before that and then copaxone for 6 months. I was unable to stay on copaxone. You start out on a very low dose of Rebif, something like 1/8th of regular dose and then go to 22mcg and then on to 44mcg 3 times per week. I stayed on both of the lower doses longer than was recommended and took quite a bit longer to work up to the 44mcg, just to be sure that I did not have any problems. That worked for me. We are all different in what and how we tolerate these drugs, but just thought I would throw this in the mix.

    I hope something works out well for you. We have a number of people on here who are not on any of the drugs and they appear to be doing well. So also keep that in mind in case you have to stay off of the drugs for awhile. I am glad now that they would not let me have Ocrevus. I really feel that I would be in your situation and that is what my Doctor was concerned about.
    Virginia

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  3. #12
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    Ocrevus sounds like it would be dangerous for you. So I hear your concern.

    While waiting for something better, might IVIG be a good bet for you? My doctor sometimes uses it for his MS patients, it is indicated for MS as well as many other autoimmune disorders. And it wouldnít mess around with your B or your T cells.

    Is your doctor an MS specialist. If not, I would get a second opinion from a MS specialist about alternatives to Ocrevus. The Ocrevus stays in your body a while, right? If so, keep monitoring for cancer and infections.

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  5. #13
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    Sunshine2,
    I go to an MS Center here in Hartford. My neuro has MS himself which I've never experienced and has it's positives and negatives. :) I have had many neuros due to moving frequently as a military spouse. I will definitely look into IVIG. I"m feeling a little panicky right now as my legs are giving me trouble. I want to keep the abilities I have, you know?

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  7. #14
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    Thanks for your answer, Cruiser. Yesterday I saw an article about using Rebif to treat COVID-19. I am going to ask my doctor his opinion about switching to that during the pandemic.

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  9. #15
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    Quote Originally Posted by Ikoiko View Post
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    Hi, Cruiser. Are you sure it is your T cells that are low and not your B cells? I am on Rituxan, which is pretty much the same as Ocrevus, and I know the drug works by lowering B cells. I have never heard of it lowering T cells, so would like to know the answer to this. Thanks.
    Me too! When will you be discussing this with your neuro? I have been on rituxan for years. Before that I did IVIG for many years and it was quite helpful. You could ask about it. It is a blood product gathered from the blood of many donors. I was eligible for it because I was in a situation somewhat like yours.
    Linda~~~~

    Be the kind of woman that when your feet hit the floor each morning the devil says:"Oh Crap, She's up!"

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  11. #16
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    Lazarus,
    I'm talking with my neuro on the 17th to go over recent MRI results and new treatment options. Last time we spoke he suggested that my low WBC protects me so I don't need one. It's been 8 months since my last Ocrevus infusion. I'm trying to relax about not being on any DMD but I'm having a hard time. Every time I have switched from one DMD to another I have had a big attack. Last one gave me my limp- not looking for another loss. I've been on A, B, C, Tecfidera and Ocrevus now. Yeesh. 20 years feels like a long time now. I appreciate this forum listening. :)

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  13. #17
    Distinguished Community Member Howie's Avatar
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    I'm one of the folks Virginia was talking about who take nothing, but still walk, and still drive, but not much of either. I would suggest take nothing for awhile, and let your body stabilize from the drugs you have taken, and go from there. I wish you the best. This is a strange disease for sure. Oh, I was DX 22 years ago.
    Last edited by Howie; 08-07-2020 at 07:58 PM.
    "Given the millions of billions of Earth-like planets, life elsewhere in the Universe without a doubt, does exist."

    Albert Einstein

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  15. #18
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    Quote Originally Posted by cruiser View Post
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    Lazarus,
    I'm talking with my neuro on the 17th to go over recent MRI results and new treatment options. Last time we spoke he suggested that my low WBC protects me so I don't need one. It's been 8 months since my last Ocrevus infusion. I'm trying to relax about not being on any DMD but I'm having a hard time. Every time I have switched from one DMD to another I have had a big attack. Last one gave me my limp- not looking for another loss. I've been on A, B, C, Tecfidera and Ocrevus now. Yeesh. 20 years feels like a long time now. I appreciate this forum listening. :)
    You have really worked hard with so many DMTs Cruiser. The research has put fear into you about being off of them for a while, but, as many here have learned, itís really a crap shoot. Many of us have been on no DMTs and have remained stable.

    My MS is relatively mild. Did Avonex in the early 2000ís until recalled batches (known to Biogen) attacked my lungs and heart per Mayoís opinion. I stopped all DMTs.

    I started IVIG 4 years ago for my CommonVariable Immune Deficincy syndrome and as a possible hope for MS. Then I developed a Rare disease called Stiff Person Syndrome which also responds to IVIG.

    You can do it subcutaneous in your home, or IV in an infusion center. Its very expensive to do it at home per Medicare rules, and its free in a hospital setting re Medicare. Dont know about your insurance.

    I do a very slow drip so it takes 8 hours, because at a higher rate, I develop fever, spasms, which do resolve within 24 hours, but I prefer to not risk that. I do 25G of Gammaguard. There are several brands. There is a national shortage, as the home health care industry has hordes it for home infusion, making it harder for hospitals to get it, and also more diseases respond to it, so there is more of a need.

    Only once was my hospital unable to infuse me, so I went without it for 5 weeks, instead of my alternate weeks. I donít know how often MS iteself requires the IVIG. My SPS requires higher frequency.

    Let us know how it goes.

    Also, do the other things they say helps stave off deterioration: Exercise as you can, eat healthy foods, keep your weight in a normal level. These can have significant impacts. Keep your sat fat intake down to 15G per day. Its not hard to do that if you read your labels. This is a war, and you want to throw everything at it that science has found to be effective or even somewhat effective.

    Keep on Moving: \very important!!

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  17. #19
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    Linda, I plan to email my neurologist this weekend. I really lack executive function as part of MS. It is hard to get anything done.

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  19. #20
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    Welcome, cruiser!

    I'm another of the people here who aren't on any MS drugs.

    I was diagnosed in 1980. I tried Avonex for 3 years, then Copaxone for nearly 3 years, but for the last 9 years or so I've been letting MS do whatever it's going to do. I do take 5,000IU of vitamin D3 daily and like to think it's helping. I'm trying to stay active by keeping up with exercise routines.
    MS, diagnosed 1980. Avonex 2001-2004. Copaxone 2006-2009.

    "Always put off until tomorrow whatever you think you should do today." --Anonymous



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