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    No more veins

    It had been almost exactly 9 years since I started Tysabri. There is no way to know what would have happened if I had stayed on an ABC drug or done nothing. I have progressed but there have been no new lesions in my brain.

    Monday I went for my Tysabri treatment and the nurse had a very hard time finding a vein and the IV fell out before the treatment was finished. The nurse wrote my Neurologist and I messaged him also. Like a dumb dumb I wrote “the only option I see now is to put a pic line in and start Ocrevus” (I have learned over the years that telling a doctor what you want is a perfect way to never get it).

    How can I get myself out of this corner I have put myself in? My neurologist responded by saying I need to make an appointment with a nurse to discuss my options. I made the appointment but am furious that I am being put through these road blocks. Living in a small town doctors have a monopoly. We are at their mercy. And they can get really belligerent. Where I was before I never had to come out and say what I wanted because I knew I would be given the choice. And I knew the choice I wanted would be on the table.

    I never thought I would get in this situation, that I would always find leverage to move forward. But now?

    #2
    I am not sure why you thought you had to switch to Ocrevus. I had a powerport put in over a year ago and still get my Tysabri infusions every 4 weeks thru it. It has made it so much easier. Is it possible that the appointment is not so much to talk about a port, but to discuss the prescription options?
    Kathy
    DX 01/06, currently on Tysabri

    Comment


      #3
      Actually what I meant was that I really want to start Ocrevus. People are doing very well with it. The nurse was talking about the advantage of not having to come every month for an infusion. She told me almost all of the MS patents she sees at the infusion center have switched from Ty to Ocrevus and they are doing very well.

      We talked about getting a port but I have a lot of reservations about it. My skin is so thin I can’t imagine living with a big thing implanted under my skin. In addition my immune system has become so suppressed that any time I get a cut on my skin I end up in the hospital on IV antibiotics.

      So what to we do? I have the answer but it’s no use mentioning it. A pic line in a temporary vein access line that is thread from the arm to the heart. You can only use them for three weeks but that would be plenty of time to do the first round of Ocrevus.

      Comment


        #4
        PICC lines have their own risks and you would need to have the procedure done then every 6 months for the next dosage then? It seems to me there would be greater infection risk this way then with a port.

        As for Ocrevus, I had asked my neuro about it. He was only moving people on it from Tysabri when they weren't having the success expected on Tysabri or because of JCV titer. His thought - if stable on Tysabri, why change?. The safety profile has had more time to evolve with Tysabri, so why risk it? They were his thoughts. I have a new neuro now and see him next week. So I will see what his thoughts are.

        Just be prepared they may want to also talk oral treatments as well if your veins have become an issue.
        Kathy
        DX 01/06, currently on Tysabri

        Comment


          #5
          Originally posted by palmtree View Post
          Actually what I meant was that I really want to start Ocrevus.
          Ask him to talk you through why its a bad idea and then just ask questions. Have the conversation with yourself first so you can jot down anything that comes to mind (less to remember on the spot).
          The future depends on what you do today.- Gandhi

          Comment


            #6
            My post was a little bit looney. Thanks for trying to make sense out of it. The reason I feel I need to change is because getting poked every month is going to make a bad situation worse. Have read a lot about the port and everything about it sounds like trouble for me. My skin in very thin and I think having an object under my skin would be very uncomfortable. I have very skinny shoulders and upper body so it would be like putting it on a child.

            As far as PML is concerned I do not factor that into the equation because my MS is aggressive and there are no guarantees either way. My doc says any time you lower the immune system the risk goes up.

            I got some relief today after speaking with the nurse over the phone. She said she would be willing to work with me and just wants me to come in to take care of the administative part of it.

            The only thing hanging out there now is the vein access. I had a picc line before and it worked out really well. But the nurse said the hospital “doesn’t like to send people home with picc line“. It is hard to see any more risk of infection with that than doing the surgery for a port. Any time you cut the skin there is risk of infection.

            Thank all. I will let you know when and if this thing is resolved.

            Comment


              #7
              Glad you are having a good conversation and seem on the way to getting what you want. My comment on the risk for the picc line was that you have to have that outpatient procedure done every six months, so the frequency of the skin getting cut is higher. That was all I wanted you to think about in your risk assessment.
              Kathy
              DX 01/06, currently on Tysabri

              Comment


                #8
                I agree. My thinking is that I will get the picc line for the first two infusions and then hope for the best at finding some veins. My experience is that the veins come and go. Do not know why.

                The thinking is that trying to find a vein every six months will be a lot better that every month. It will simplify my life, too.

                Most likely I will end up with a port eventually but would like to put it off as long as possible.

                Comment


                  #9
                  Originally posted by pennstater View Post
                  As for Ocrevus, I had asked my neuro about it. He was only moving people on it from Tysabri when they weren't having the success expected on Tysabri or because of JCV titer. His thought - if stable on Tysabri, why change?. The safety profile has had more time to evolve with Tysabri, so why risk it? They were his thoughts. I have a new neuro now and see him next week. So I will see what his thoughts are.
                  Looking forward to hearing your follow-up on this and good luck.
                  All the best, ~G

                  Comment


                    #10
                    Originally posted by gargantua View Post
                    Looking forward to hearing your follow-up on this and good luck.
                    The new neuro's thoughts matched the old neuro's thoughts. This is what he said: "You are on the most effective treatment there is which insurance is covering, youhave been stable, tolerate it well, and are JCV negative. Why risk a change? If any of these things change, then we should revisit your options."

                    So Tysabri for the foreseeable future it is for me.
                    Kathy
                    DX 01/06, currently on Tysabri

                    Comment


                      #11
                      My neurologist says the PML risk with Ocrevus is probably as high as Tysabri because both lower the immune system significantly, which is what creates the PML risk. I, although out of the mainstream, have chosen not to get a JC test. My thinking is that PML is just what MS will do over time. It just takes longer. PML has a very low percentage of risk while MS progression risk is 100%. My case was very aggressive before I started Ty and I watched my aunt spend 20 years as a vegetable: not able to walk, talk, move her head, pee, see or anything. She just moaned like an animal. As an aside, I suspect that certain strains of it are contagious because she was not a blood relative and my MS course has paralleled hers a lot. The only difference was
                      Tysabri.

                      Tomorrow is the big day when I go to see the NP to discuss my “options”. I want to switch to Ocrevus because of the convenience and a chance to preserve my veins awhile longer.

                      One thing that was encouraging was when I read one of the other posts about the relationship between high blood pressure and difficulty accessing veins. My BP has been running around 190/110. Starting taking Norvasc and lasix to my usual regimen and hope it will sock the pressure down and solve the problem.

                      Another thing that sort of influenced my decision was that the nurse at the infusion center said all but four of her Tysabri patients have switched to Ocrevus and they are all really happy with it. Even though they fight MS with entirely different mechanisms they are very similar in terms of risk, effectiveness and side effects.

                      Comment


                        #12
                        I am amazed that you were allowed to stay on Tysabri without getting JCV bloodwork. I have to get it every 3 months. I thought it was part of the touch protocol? I just know I almost wasn't authorized to receive the last infusion because my lab results were late. Thankfully, they came in just in time.

                        I wish you good luck with Ocrevus.
                        Kathy
                        DX 01/06, currently on Tysabri

                        Comment


                          #13
                          Originally posted by pennstater View Post
                          The new neuro's thoughts matched the old neuro's thoughts. This is what he said: "You are on the most effective treatment there is which insurance is covering, youhave been stable, tolerate it well, and are JCV negative. Why risk a change? If any of these things change, then we should revisit your options."

                          So Tysabri for the foreseeable future it is for me.
                          Thanks for that. I hope you continue to do well and remain JCV negative.
                          All the best, ~G

                          Comment


                            #14
                            Originally posted by gargantua View Post
                            Thanks for that. I hope you continue to do well and remain JCV negative.
                            Thanks G!

                            Palmtree - hope you had a good meeting with the NP and came out with what you wanted.
                            Kathy
                            DX 01/06, currently on Tysabri

                            Comment


                              #15
                              Report from NP:

                              Discussed changing to Ocrevus. I never knew how it was pronounced. She said, “Ócrevus” ócrevus

                              She was not to keen on the switch. She said, since I have not had any new lesions on Tysabri, there is a risk of a flair if I switch. I asked her if it had ever happened. She said no but everything is all so new. Tysabri is a tried and true treatment. We know the risk and we know the benefit.

                              We also discussed line access. The veins! She recommends a port but said doing a picc line is not out of the question. She just said the hospital will probably not let anyone leave the hospital with a picc line. I did it in 2010 when I got a jaw infection but not ok now.

                              So everything is left until I see main neuro in September. I still don’t know what to do. Still think the blood pressure factor was the problem. I love this site because we learn so much more from each other than many healthcare providers.

                              Comment

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