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Please tell me about your Ocrevus experiences

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    Please tell me about your Ocrevus experiences

    Hi,

    I have been on Copaxone for four years with no changes to my MRI's and no disease advancement...until now. Now I have three new brain lesions since April 2019 and what feels like the right side of my face falling asleep (tingling).

    My doctor and I are meeting on Friday to discuss medication change. She is leaning toward Ocrevus and so am I.

    I have been reading a lot of what folks are saying here. Right now, I don't have a lot of fatigue - only if I truly overexert myself, then a day of extra rest and I am back to normal. I am going to get fatigue from this medication? Please share your experiences if you can, what worked well, what surprised and tips for surviving the infusions.

    Thank you for your help.
    Diagnosed RRMS 4/7/15, symptoms for 8 months prior. Copaxone 4/27/15

    #2
    Hello,

    I just read through many of your posts to get a better idea of how best to respond. I don’t have MS, my spouse does, some of my relatives, plus people who are very, very important to me. Literally, I have studied MS for decades. Currently, the 35th ECTRIMS conference in Sweden is ongoing. Over 1600 abstracts present basic and clinical research at this meeting which ends Friday.

    I eagerly await one presentation, in particular, on Friday… Poster#1657 Preliminary safety and efficacy of ATA188, a pre-manufactured, unrelated donor (off-the-shelf, allogeneic) Epstein-Barr virus-targeted Tcell immunotherapy for patients with progressive forms of multiple sclerosis M. Pender (Brisbane, AU)

    I anticipate superbly effective and very safe MS treatments will eventually emerge from this line of research targeting a viral cause (EBV) for MS. Time will tell.
    There is a thread titled The Charcot Project under Medications and Treatments where you can read more, if interested.

    I believe the question you have is basically… what to expect with Ocrevus?

    First, I congratulate you on narrowing your consideration of a new DMT to one that is highly effective. As you are aware, all MS DMTs have pluses and minuses. And, individual response to any DMT can vary a good deal making outcomes difficult to predict. That is where stats from trials are helpful but nothing is iron-clad in MS.

    Personally, the only oral I would consider taking myself is the newest one, Mavenclad. You may never have heard of it; however, it should be considered along with Tysabri and Ocrevus as those two seem to be on your radar. Mavenclad is an oral but you only take it for a few days, then wait one year and take it a few more days and that is normally it. Pretty simple, pretty safe, and pretty effective, too. I’m not advocating, just mentioning it.

    In this household switching from Tysabri to Ocrevus has led to more fatigue. My spouse had less fatigue on Tysabri, a DMT she received more doses of than anyone else in the world before she went on extended dosing interval (extending time between doses to 5, 6, 7, or 8 weeks rather than the standard 4 weeks). There is an 88% reduction in the risk of getting PML by extending 5 or 6 weeks between doses of Tysabri.

    My spouse takes Adderall, an amphetamine, to keep the pace she enjoyed with Tysabri. She is age 64 and leads Silver Sneakers and a yoga class at the YMCA. The reason for her relatively good health, we believe, is because she got on a highly effective DMT, Tysabri in early 2002, when it was in trial and remained on it. She was JCV+ with a high titer from the very first JCV test, which btw, was not developed until somewhere around 2010.

    Other than increased fatigue, little else has surfaced with Ocrevus as far as an undesirable side effect, which is pretty darn good in the world of MS drugs.

    A highly effective DMT offers the best chance of a “normal” life. But also recognize the more effective the DMT, generally, the more risk it carries of undesirable side effects. That said, my spouse had no side effects on Tysabri we could identify; that is not the case with everyone. Obviously, some people respond quite well, certainly, not all do.

    If you take Ocrevus and work full time, it would not be surprising if you get too fatigued to work at the pace you enjoyed in the past. But reading your posts, it does seem as though MS is accelerating at present and you and your doctor are on the same page in considering a more aggressive DMT. For what it is worth, I totally agree. To me, it seems imperative to slow or halt MS.

    May I be frank? Normally, one might be considered close to pushing the age limit at 45ish for HSCT, or at least, for the most legitimate providers of HSCT. However, you were diagnosed rather recently, age wise, meaning if your immune system can be re-set through HSCT, you likely would recover much, if not virtually all function lost because you still have reserve capacity, neurological reserve, for your CNS to re-wire work-arounds of damaged areas. As you know, work-arounds of damage in the spinal cord are less likely than in the brain, so avoiding damage in the first place is the best option.

    If feasible, maybe take a look at HSCT. It appears that about 80% of MSers are responders to HSCT. For some, HSCT has worked effectively as a cure. Insurance likely will not cover it, however, you may be able to crowd source funding. Just a thought.

    Last point… Ocrevus is still new. There is a risk of serious infections and it has not had enough time or data to become clear whether, or not, that risk is meaningful. Anyone suffering from re-occurring infections needs to proceed thoughtfully with Ocrevus, IMO, until data informs what that additional risk is, if any.

    For what it is worth... my list for the top MS DMTs in descending order... HSCT, Tysabri, Ocrevus, Mavenclad, recognizing there are responders and non-responders to each.

    Best Wishes!

    Comment


      #3
      Hello Boymom, I'm sorry about your 3 new lesions. I know it's disappointing. I have been on ocrevus for 2 yrs. I have not had a relapse but I haven't seen any improvements in my sx's.

      I am now fighting a fungal skin infection(first time ever) so I am wondering if it could be an infection cause from ocrevus since one of the side effects is infections.


      I wish you the best in whatever you choose.
      God Bless Us All

      Comment


        #4
        Sorry to hear about your new lesions; MS sucks.

        Copaxone's efficacy is weak compared to Ocrevus and O's side effects are pretty trivial. I'm due soon for my 5th infusion (over a year on it) and, FWIW, I have had no side effects or active lesions.
        59M / RRMS / Dx1987 / Ocrevus

        Comment


          #5
          I am now fighting a fungal skin infection(first time ever) so I am wondering if it could be an infection cause from ocrevus since one of the side effects is infections.
          Interesting. I've wondered about the same thing. Can you relate your experiences, have any info or links on fungal issues?
          59M / RRMS / Dx1987 / Ocrevus

          Comment


            #6
            All infections on Ocrevus should be reported so they can be tracked. I trust your neuros are doing that but I wonder, sometimes. Far too much of them saying, "Oh, its just a little this, or a little that."

            Infections are projected by some of the neurologists I respect very, very much based on their track record. to become a huge problem with Ocrevus.

            It aggressively suppresses the immune system so infections may result... no mystery about it.

            I'm so sorry if this seems negative. Ocrevus is a very effective DMT against MS!!!!!!!! Please keep that in mind. However, I am not going to pull punches, I'm going to call them as I see them. Most infections can be controlled fairly easily, not all, but the majority.

            Comment


              #7
              Scheduling infusion

              Thank you all very much for your feedback. Myoak my doctor actually mentioned stem cell transplant as something people are interested in, and we both agreed, for me, that it is not the right option.

              We did agree on Ocrevus. I am getting the bloodwork lined up now and will hopefully be able to get my infusion in the next month or so. I also need to get a flu shot asap, because it doesn't work as well if given after the infusion.

              Fingers crossed
              Diagnosed RRMS 4/7/15, symptoms for 8 months prior. Copaxone 4/27/15

              Comment


                #8
                Golgotha, It started on my big toenail.I used otc med on it for about a wk. Then the toenail came off. I put a bandaid on it so I could put my shoes on. Well when I was taking the bandaid off I scraped some skin off on the back of the toe. Before long I had peeling skin over the bottom of my foot. it doesn't itch but it is very painful when I walk.

                Dr gave me Alcortin to use.
                It has been over a month since I scraped the skin and is still painful. so I know Ocrevus has weaken my immune system.

                I also had a cold sore on my lip. I am 67 yrs. and that is the first time ever and I know that is side effect of Ocrevus.

                Sorry I don't have any links.
                God Bless Us All

                Comment


                  #9
                  I switch to ocrevus from tecfidera this July. I'm doing great and had no side effects just nausea and tired that night and next day after the infusion. So happy that I switch due to getting worse on tecfidera after 2 MS flares in 6 months.
                  DX 2017/Tecfidera/Ocrevus 2019

                  Comment


                    #10
                    Been on Ocrevus since spring 2017. No relapses, no new lesions. No change in EDSS.
                    Did get a plantars wart that has yet to go away with OTC interventions.

                    The latest ECTRIMS had some data about Ocrevus and its effect on preventing/delaying progression. The news was encouraging. Prof. Gavin Gionvanni of Barts of London cautions, along with other researchers, that it is not the relapses and lesions but the progression of brain shredding that leads to disability. All these trials focussed on lesions and relapses are diverting from the critical aspect of remaining disability free and by that he means upper limb, lower limb and cognitive.

                    Oh, you may want the newest Shingles vaccine or at least ask about it before starting.

                    Comment


                      #11
                      Forgot to add- hydrate out the wazoo on the day of the infusion. For me this meant the difference between losing two days due to feeling like crap or being just fine. How much water- I peed about 12 times during the infusion.

                      Comment


                        #12
                        Originally posted by Boymom123 View Post
                        Hi,

                        I have been on Copaxone for four years with no changes to my MRI's and no disease advancement...until now. Now I have three new brain lesions since April 2019 and what feels like the right side of my face falling asleep (tingling).

                        My doctor and I are meeting on Friday to discuss medication change. She is leaning toward Ocrevus and so am I.

                        I have been reading a lot of what folks are saying here. Right now, I don't have a lot of fatigue - only if I truly overexert myself, then a day of extra rest and I am back to normal. I am going to get fatigue from this medication? Please share your experiences if you can, what worked well, what surprised and tips for surviving the infusions.

                        Thank you for your help.
                        Boymom123,

                        I started Ocrevus in July, having two half-infusions two weeks apart. I've had MS for at least 20 years. I had been off medication since October 2018 and my neurologist wanted me to try something else. They did a newer type of MRI that shows more detail. I did not have any new lesions but I have many old lesions small and large, and so I want to keep it at bay. I think it's good that you are trying something stronger than Copaxone since you had new lesions. If my child were in your situation I think I would want them to do the same thing.

                        My side effects from the infusions were extra fatigue that lasted about a week or two, a bit longer after the second half. I did have a slight sinus infection a couple of weeks ago but I've been having allergy issues all summer so I'm not sure if that is due to the immune suppression from Ocrevus.

                        It's best if you stay hydrated before the infusion. Try to have a healthy diet and drink a lot of water in general. I haven't had any other issues and I'm 61 years old. I wash my hands frequently as I always have. I get my first full infusion in January and I'm actually looking forward to it.

                        I hope it works well for you, keep us posted!
                        Take care, Wiz
                        RRMS Restarted Copaxone 12/09

                        Comment

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