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    #16
    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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      #17
      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, 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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        #18
        Originally posted by cruiser View Post
        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, it’s 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 2000’s until recalled batches (known to Biogen) attacked my lungs and heart per Mayo’s 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 don’t 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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          #19
          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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            #20
            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.
            SPMS diagnosed 1980. Avonex 2001-2004. Copaxone 2006-2009. Glatopa (glatiramer acetate = Copaxone) since December 2020.

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              #21
              Originally posted by cruiser View Post
              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. :)
              That’s why I mentioned IVIg. It is not chemo. Not a drug. It is a blood product..not created but, in a sense harvested!
              Linda~~~~

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

              Comment


                #22
                Originally posted by cruiser View Post
                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?
                Hi..just noted that you live right next door to me..so to speak. I used the MS clinic at Yale New Haven to direct my plan for a difficult time of cancer effecting my MS choices. I like using the researchers when there are big decisions to make.
                Linda~~~~

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

                Comment


                  #23
                  Originally posted by Ikoiko View Post
                  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.
                  Yes!!!.........
                  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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                    #24
                    Lazarus,
                    We can complain about the weather together this winter! 2 years new to the area as we are a former military family and have lived all over the US. It's been hard changing neuros every 2-3 years. Settled now until the kids are out of school/college. :)

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                      #25
                      Having to change neuros is difficult. I had some luck getting a list of neuros from the local chapter of the MS Society. At least it was a start though there was no descriptive information about any of them.

                      I was able to find more information by looking them up online.
                      SPMS diagnosed 1980. Avonex 2001-2004. Copaxone 2006-2009. Glatopa (glatiramer acetate = Copaxone) since December 2020.

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                        #26
                        Originally posted by cruiser View Post
                        Lazarus,
                        We can complain about the weather together this winter! 2 years new to the area as we are a former military family and have lived all over the US. It's been hard changing neuros every 2-3 years. Settled now until the kids are out of school/college. :)
                        Are you able to use the Yale nuero’s. Years ago Timothy Vollmer MD was there and I went to him for another opinion. I was very impressed with his clinical skills, ... he was the best of the best. Maybe other good ones are there now too?

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                          #27
                          Originally posted by Sunshine 2 View Post
                          Are you able to use the Yale nuero’s. Years ago Timothy Vollmer MD was there and I went to him for another opinion. I was very impressed with his clinical skills, ... he was the best of the best. Maybe other good ones are there now too?
                          I saw Vollmer too..for a second opinion. He was great. One of the top MS researchers in the country. My great neuro collaborated with him about what to do about MS drugs right after I had a malignant melanoma removed. So the two looked at my options although Vollmer gave advice quickly and with surety.

                          Anyway, I am seeing Meghan Hickey in Springfield, MA. She is at Baystate, Cruiser. I like her a lot but miss my neuro of 25 years who retired.
                          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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                            #28
                            I thought I already posted this, but now I don't see it. I was diagnosed at Yale-New Haven when I was in grad school.

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                              #29
                              Originally posted by Ikoiko View Post
                              I thought I already posted this, but now I don't see it. I was diagnosed at Yale-New Haven when I was in grad school.
                              I was diagnosed very quickly once the first attack began. I was using UMass medical in Worcester MA. Then I was lucky to switch after a few months to a research neuro who was at Baystate and on faculty at Tufts.i have always liked my doctors and feel very fortunate to have had people who worked with me to maintain as much as I have!
                              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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