Announcement

Collapse
No announcement yet.

Covid-19 infusion cancellation?

Collapse
X
 
  • Filter
  • Time
  • Show
Clear All
new posts

    Covid-19 infusion cancellation?

    I belong to a Tysabri Facebook group. I am really surprised by the number of people who have said their neuros or their infusion centers have cancelled their infusions.

    What upsets me more is that they are not even offered another DMT to minimize a rebound relapse. This scares me more than I can say.

    Last neuro visit, before all the virus talk, my neuro told me about a patient of his who cancelled his infusion twice, refused another DMT, and in the 3rd month, had a severe relapse, and is now paralyzed on one side . He was just telling me to make sure I didn't stop without something else.

    Has anyone had their infusion cancelled due to the covid-19 virus? If so, was it just a one time and if not, were you offered another DMT?
    Kathy
    DX 01/06, currently on Tysabri

    #2
    Are they canceling out of fear of contagion or out of fear of Tysabri's impact on the patient? I'm genuinely curious.

    I have my Tysabri infusion next week. I emailed my neuro to ask her about it, as I've read that Tysabri could increase my risk of getting Covid-19. Her response: "Some MS meds decrease the immune system but not Tysabri-it doesn't kill any cells but rather just stops them from going into the nervous system and causing damage."

    So I'm going in as scheduled...

    Comment


      #3
      Originally posted by Shawshank View Post
      Are they canceling out of fear of contagion or out of fear of Tysabri's impact on the patient? I'm genuinely curious.

      I have my Tysabri infusion next week. I emailed my neuro to ask her about it, as I've read that Tysabri could increase my risk of getting Covid-19. Her response: "Some MS meds decrease the immune system but not Tysabri-it doesn't kill any cells but rather just stops them from going into the nervous system and causing damage."

      So I'm going in as scheduled...
      it seems to be multiple reasons:
      1. infusion centers closing as they don't want the employee and patient risk
      2. neuros telling patients the virus puts them at higher risk, and for some unknown reason, it seems to be mostly JCV positive patients they are pulling off


      My neuro said something similar to yours. I have mine in 1 1/2 weeks and plan on going. I have heard of procedural changes at a lot of places: only the patient allowed in, masks provided, and temperature taken right at the door. Any temperature, not even allowed in.

      I read this article out of the UK which may be of interest. Right now, they don't believe the virus is neurotropic, meaning it doesn't pass thru to the CNS. If it mutates, which is a possibility, then it could potentially become neurotropic and put us at risk for encephalitis and meningitis. Currently, their recommendation is to stay the course.
      https://multiple-sclerosis-research....vid-19-mutate/

      This excerpt explains why:
      "The reason why these complications happen on natalizumab is that natalizumab blocks trafficking of anti-viral lymphocytes into the central nervous system and so if a virus gets into the CNS it will cause damage unchecked by the immune system"

      My personal thought is that even if it becomes neurotropic, I am going to have the effects of tysabri in my body for a few months anyway. So I would stay the course and really isolate myself. If the virus is spreading all around me, then I might reconsider and go back to one of the earlier DMTs. Plus, if it becomes truly dangerous for us, I am sure the insurance companies will jump on it and deny coverage for the infusions. At this point, I am still more afraid of an MS relapse than I am of covid-19.
      Kathy
      DX 01/06, currently on Tysabri

      Comment


        #4
        Thanks for this info, Kathy. I was initially thinking I would skip a month, which is why I emailed my doc. But she disagreed on that approach, and also it now seems that to truly stay risk-free, I would need to skip more than just one month anyway, and then I run into the risks of being off a drug.

        I'm sure everyone - doctors, insurance companies, patients - will be staying on top of this and reassessing as time goes on. But for now, I continue.

        Thanks for the feedback...

        Comment


          #5
          Change in plans

          My infusion center remains open but the same-space neuro's office is closed (except for emergencies). It gave me pause and when I called I was told it was my decision about keeping/cancelling Tysabri appointment. She said some people truly feel they need the infusion by the time their appointment comes up. I'm not one of those people and I was feeling nervous. So I've postponed my infusion for two weeks. And then we'll reassess. Scary times. Stay well all...

          Comment


            #6
            Originally posted by Shawshank View Post
            My infusion center remains open but the same-space neuro's office is closed (except for emergencies). It gave me pause and when I called I was told it was my decision about keeping/cancelling Tysabri appointment. She said some people truly feel they need the infusion by the time their appointment comes up. I'm not one of those people and I was feeling nervous. So I've postponed my infusion for two weeks. And then we'll reassess. Scary times. Stay well all...
            Understood. If in 2 weeks, you decide to skip, make sure you talk to neuro about how long you can skip before risking a rebound relapse. I believe it is somewhere between 9-12 weeks. If you are in this range, it would be when you want to start on another DMT to minimize the rebound relapse risk. So give yourself time to get a new Rx and the prescription filled.

            Lots of luck. Let me know how things go.
            Kathy
            DX 01/06, currently on Tysabri

            Comment


              #7
              That's great information. Thank you for the heads up. I'll see where things are in two weeks but will definitely keep in mind what you shared.

              Comment


                #8
                I'm two weeks out from my infusion, and since Montana's case load of Covid-19 is increasing, I called my infusion center, just planning on checking in. Since I have extended my infusion schedule, I volunteered to change my infusion date, if necessary, and the nurse appreciated the willingness to be flexible. However, right now they seem to have everything under control. That is good to know.

                Comment


                  #9
                  Originally posted by ru4cats View Post
                  I'm two weeks out from my infusion, and since Montana's case load of Covid-19 is increasing, I called my infusion center, just planning on checking in. Since I have extended my infusion schedule, I volunteered to change my infusion date, if necessary, and the nurse appreciated the willingness to be flexible. However, right now they seem to have everything under control. That is good to know.
                  Hi Kris,

                  Just a few thoughts to share...

                  All things are possible and never more so when there is a national emergency which may open an avenue otherwise closed. I'm speaking here of the possibility of getting a home infusion of Tysabri.

                  Of course, the FDA agreement which allowed Tysabri back on the market calls for a strict infusion protocol, however, in a national emergency such as this I wonder if the FDA may grant a waiver (if applied for) during this crisis and allow a home infusion service to infuse Tysabri patients. I encourage you and others to pursue that possibility with your neuro, if interested.

                  My guess is that few neuros would be interested because many put a lot of expense into infusion centers and they would not want to start a trend toward home infusion of Tysabri, HOWEVER, THERE ARE ALWAYS PROGRESSIVE THINKING NEUROS AND A FEW MIGHT GIVE IT A SHOT.

                  Next thought...

                  Kris, the COVID-19 virus is supremely more transmissible than current thinking suggests, IMO. I am thoroughly convinced of that! Therefore, even now, if you go for an infusion here are my suggestions to help prevent getting infected. BTW, this is what I do if I have to go anywhere...

                  1. Wear a mask or respirator before you exit your car at the infusion center.

                  2. Wear rubber gloves or be extremely prudent disinfecting your hands each time you touch anything there.

                  3. Once the infusion is over and you have returned to your car carefully remove your mask and gloves as though they have poison on them and put them in a drawstring garbage bag.

                  4. Once home, spray the bottoms of your shoes with disinfectant and wipe before entering the house.

                  5. I disrobe in the garage and toss all my clothes into the washing machine. If you can't do that be sure to shed the clothes you wore asap and launder them.

                  6. Hit the shower immediately and lather away any nasty virus.

                  You may believe all this is overkill but you can't overkill this virus. Someday, when we get enough evidence to draw sound conclusions we will be shocked at how easily transmissible this virus was/is. I cannot express how strongly I believe this to be the case.

                  I have a table on my mother's front porch with hand sanitizer, gloves, masks, and disinfectant wipes I purchased 7 weeks ago. She keeps her door locked and allows no one in unless they use the safety items. She turned 100 this January, still lives on her own, and is still very sharp mentally, bless her heart!

                  I wipe down the mail and her newspaper before taking them into the house.

                  I find it good practice to use gloves to set Amazon packages in the garage and leave them unopened for 2 or 3 days to reduce chances of contamination until any virus present would have died off.

                  I believe the procedures described greatly reduces the chances of being infected and/or spreading infection.

                  Kris, my friend, let me speak plainly, I know I can speak frankly with you so the rest of this post is just for you because if I confine it to one person I cannot offend other's political sensitivities.

                  There are numerous reasons why I believe this virus is going to a bigger problem in the US than in most developed countries unrelated to political policy. That said, one huge reason for viral spread, IMO, is lack of an effective, coherent national strategy to combat the virus.

                  The national strategy, thus far, appears helter skelter and is being mis-managed, IMO. Because I cannot discern a national plan, I don't believe one even exists. But that is only my opinion. Blaming anyone or group is counter-productive, creates hard feelings, and retards working together. Leaders are doing their best, they are not bad and nor stupid. But so far, leaders and policy have been ineffective against the virus and if performance was improving evidence would indicate such. Others might do even worse, we don't know, and it doesn't really matter at this stage. Mitigation strategies will help but this is coming pretty much full bore now, regardless.

                  To me, the first task is to protect loved ones and self. The second is contribute in any way possible to the national effort. We can't over-protect ourselves from this virus.

                  There will be tough, tough days ahead. Many areas in the US have seen very little of this virus. Please don't fall into the trap of thinking it is not coming. It is coming or already there and often manifests in the most vulnerable.

                  I state things as clearly and as strongly as possible because MSers are a vulnerable population.

                  The most vulnerable should take the most precautions.

                  Be well!

                  Comment


                    #10
                    Myoak,

                    Thanks so much for the useful information! Unfortunately, a home infusion in rural Montana is just not possible. However, I actually have great confidence in my infusion center. It is in a separate facility from the hospital campus it is attached to, and is devoted to cancer treatments. I've watched the nurses follow stringent protocol with cancer patients for 18 months, and I know I'll be secure in their care. I will make my time in the clinic minimal (to the degree I can), but I do need a blood draw in case I'm able to make my neurologist appt. the end of April. I'm already 13 months out from the last appointment.

                    I know it's early, but I've read several reports that appear to believe Tysabri is one of the better MS medications to be on when it comes to Covid-19. In addition, since I'm on extended infusions of 7 weeks, I'm in even better shape.

                    Although we are remote, I've found most locals adapting to the "new normal" fairly quickly. Heck, if you are choosing to live in Montana, social distancing comes with the territory! Montana still has the zeitgeist of the frontier of the 1800's. Luckily, our governor was on top of the virus more rapidly than others. Our cases are up to 184 with four deaths. Our county only has 12 cases, but community transmission has finally been discovered. However, I'm 55 miles from the largest town, and we're a remote hamlet.

                    I'm already doing several of the items you listed, but making a homemade mask is next on my list. Heck, I already look like the local bag lady with my rollator with bags hanging off the handles, so adding a mask to the face is right up my alley.

                    I'm afraid I can't be as magnanimous as you are in regards to preparation (or the lack thereof) in planning for this foreseen event. I feel it has been a complete demonstration of incompetence at the highest level, and I, personally, hope heads roll when this is behind us. I have to wonder where we would be if we had followed the Korean model.

                    I wish you and your family all the best and hope to talk with you again on the other side. Your mom is in good hands, but she already knows that. Unfortunately, all of my relatives are in the prime target range for this virus, so I can only hope they live to see the end.

                    Kris

                    Comment


                      #11
                      Originally posted by ru4cats View Post
                      Myoak,

                      Although we are remote, I've found most locals adapting to the "new normal" fairly quickly. Heck, if you are choosing to live in Montana, social distancing comes with the territory! Montana still has the zeitgeist of the frontier of the 1800's. Luckily, our governor was on top of the virus more rapidly than others. Our cases are up to 184 with four deaths. Our county only has 12 cases, but community transmission has finally been discovered. However, I'm 55 miles from the largest town, and we're a remote hamlet.

                      I'm already doing several of the items you listed, but making a homemade mask is next on my list. Heck, I already look like the local bag lady with my rollator with bags hanging off the handles, so adding a mask to the face is right up my alley.

                      I'm afraid I can't be as magnanimous as you are in regards to preparation (or the lack thereof) in planning for this foreseen event. I feel it has been a complete demonstration of incompetence at the highest level, and I, personally, hope heads roll when this is behind us. I have to wonder where we would be if we had followed the Korean model.

                      I wish you and your family all the best and hope to talk with you again on the other side. Your mom is in good hands, but she already knows that. Unfortunately, all of my relatives are in the prime target range for this virus, so I can only hope they live to see the end.

                      Kris
                      Hi Kris,

                      Thank you for your kind wishes!

                      Having spent two summers in Libby in the mid 70’s I fell in love with Montana and still am! Was there last in ‘96 on the way to Alaska. Montana is incomparable. Yep, your governor is right at the top in my opinion, in the sweet spot between two political extremes, a true leader, y’all are very fortunate! Other leaders are emerging, too, in several states.

                      Kris, you are knowledgeable and well-grounded, I know you are being as safe as possible. One more thing I would give you a heads-up on is a comment on one of the best MS blogs in the world, this one is in the UK.
                      Here is the comment…

                      “In China, 41% of all cases were secondary to hospital-based transmissions. Lock down (in the UK) is expected to last until the end of May or June 2020.”

                      multiple-sclerosis-research.org/2020/03/covid19-reality-bites

                      So, heads up when you go to any medical facility because transmission seems risky according to data from China. I feel certain it is true and I expect data here in the US will reflect similarly when collected and analyzed a few months down the road.

                      I appreciate that your location of infusion will be removed from areas treating the virus but heads-up if for any reason that changes. Plus, I wanted others to know in order to best prepare them. I’m sure the medical community here is aware and attempting to incorporate lessons from China, South Korea, and other countries.

                      In the beginning we, the USA, were infuriatingly slow to grasp the situation but now that it is inescapable we have finally been sufficiently punctured only to discover we were running on rims from the get go to a new reality. Yes, there will come a time to be angry. Right now, we have to deal with the virus and all that our ineffective preparation entails.

                      Be safe and be well, my friend!

                      I am envious of anyone living in Montana!

                      Comment


                        #12
                        Hello all.

                        My MS Center in NYC is advising continuing Tysabri infusions. My neuro tells me I can stretch my infusion to 6 weeks, but not longer.

                        However, I am staying with family away from the city right now and am looking into the possibility of having my April infusion near where I currently am, in Western NY. In anyone familiar with Jamestown Medical Oncology/Roswell, in Jamestown, NY, as an infusion site? Waiting to hear back from them on availability, but they are a TOUCH site, according to Biogen.

                        Stay well, all,
                        Karen

                        Comment


                          #13
                          Originally posted by Special Kay View Post
                          Hello all.My MS Center in NYC is advising continuing Tysabri infusions. My neuro tells me I can stretch my infusion to 6 weeks, but not longer.However, I am staying with family away from the city right now and am looking into the possibility of having my April infusion near where I currently am, in Western NY. In anyone familiar with Jamestown Medical Oncology/Roswell, in Jamestown, NY, as an infusion site? Waiting to hear back from them on availability, but they are a TOUCH site, according to Biogen.Stay well, all, Karen
                          Lots of luck to you. I hope you are successful in switching locations. Let us know.
                          Kathy
                          DX 01/06, currently on Tysabri

                          Comment

                          Working...
                          X