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Tecfidera and JCV+- what is the risk?

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    Tecfidera and JCV+- what is the risk?

    JCV positive with from what Iíve been told on the higher side of positive (donít know the exact number). I know thereís some
    Risk for PML with Tec. From what I understand itís mostly attributed to low lymphocyte count. Is there high risk to go on this if JCV+? Iím considering Tecfidera as an option. It will be either Tec or Rituxan as my next DMD.

    #2
    JCV

    Originally posted by DCat23 View Post
    JCV positive with from what Iíve been told on the higher side of positive (donít know the exact number). I know thereís some
    Risk for PML with Tec. From what I understand itís mostly attributed to low lymphocyte count. Is there high risk to go on this if JCV+? Iím considering Tecfidera as an option. It will be either Tec or Rituxan as my next DMD.

    Im rather newly dx (sept 2017) but my neuro asked me about 3 DMD's, tecfidera, rebif and Gilenya. I took tecfidera and in month 6 on May 18 and I tolerate it well. It's early to tell if it works for me until an MRI in aug but I've remained relapse free since October 2017 and recovered well hope tecfidera keeps me stable for many years 👍

    As for JCV tesy he didn't do one but watches my lymphocytes which are fine since my last appt. in February
    hes not concerned.

    i see him in June again and do my blood next month again and hope all is well then to going into my aug MRI.

    not too long to wait now to see how I'm doing. I'll be overjoyed if I get a good MRI and halted the disease with excersize and diet.

    hope this helps, but again I'm a bit of a rookie still.

    Comment


      #3
      Yes definitely helps. Glad youíre doing well on it.
      Originally posted by Ant1981 View Post
      Im rather newly dx (sept 2017) but my neuro asked me about 3 DMD's, tecfidera, rebif and Gilenya. I took tecfidera and in month 6 on May 18 and I tolerate it well. It's early to tell if it works for me until an MRI in aug but I've remained relapse free since October 2017 and recovered well hope tecfidera keeps me stable for many years 👍

      As for JCV tesy he didn't do one but watches my lymphocytes which are fine since my last appt. in February
      hes not concerned.

      i see him in June again and do my blood next month again and hope all is well then to going into my aug MRI.

      not too long to wait now to see how I'm doing. I'll be overjoyed if I get a good MRI and halted the disease with excersize and diet.

      hope this helps, but again I'm a bit of a rookie still.

      Comment


        #4
        Originally posted by DCat23 View Post
        JCV positive with from what Iíve been told on the higher side of positive (donít know the exact number). I know thereís some
        Risk for PML with Tec. From what I understand itís mostly attributed to low lymphocyte count. Is there high risk to go on this if JCV+? Iím considering Tecfidera as an option. It will be either Tec or Rituxan as my next DMD.
        Six percent (6%) of TECFIDERApatients experience prolonged low lymphocyte count that could be problematic in the long-term. Talk to your neurologist about regular lymphocyte monitoring, via CBC, if you decide to go on TEC. For most patients they experience a decrease in lymphocyte count the first year of treatment.

        I wish you well.

        Comment


          #5
          JCV+ and lymphocytes @ 0.8

          My MS presented itself in April 2006. Bounced in and out of hospitals
          for 5 months misdiagnosed until I finally found a Neurologist that didn't have his head up his .

          By this time I was a wreck. Started Chemotherapy for 6-7 months.

          Got "better". Continued steroid infusions and started Avonex injections.

          Gotta say that was wierd. Once every week giving myself injections.

          Everything was great. Sorta plataued. No worse but not "better".

          Discuss with my Neuro. Asked him "what's the biggest gun in the cabinet" to kick my MS's and try to get back to some semblance of
          my old life?

          Started Tysabri infusions and continued steroid infusions. All good.

          I knew the risk of JCV and PML. Everything good. Life is better.

          On a side note at the this point I start having serious neck pain.
          Long story short, discs in my spine are begining to deteriorate!

          Add one more doctor to the mix. Spine surgeon. Discs at C5-C7 gone.
          OK....this is new. Blah, blah, blah..... surgery. Titainium Peek Cage and
          6 Titainium screws with "donor" discs. Yep....dead guy discs.

          Later on a routine MRI shows 2 Titainium screws broken. Dammit.

          Then.....darn! Routine blood work shows JCV+!

          Took almost 1 full year for traces of Tysabri to get to a level I could
          start a new treatment.

          Let's go with Tecfidera. All good. MRI scans showed no new activity.
          Feeling better. Happy. Then.... lymphocytes crash! Lowest @ 0.7

          Off Tecfidera for 11 months continue with steroid infusions.

          Finally blood work shows no traces of Tecfidera so what's next?

          Start Aubagio. Consult with Hematologist regarding lymphocytes.

          Lymphocytes at a steady 0.8 and that is my "new normal".

          Still isues with spine. So I have a Spinal Cord Stimulator implant.

          Nevro Sensa stimulator implant surgery goes well.... I thought.

          Complications arise when the wires are protruding THRU my skin
          up at C5-C7 discs. 2nd surgery to fix that. Senza unit operating
          as it should and no "issues". Also no releif for spine pain.

          Now NOBODY will touch my spine.

          Senza recharge every 48 hrs.

          Aubagio is working. MRI scans show no new activity.

          Lymphocytes steady at 0.8

          Daily neck pain. Severe at times. Never goes away.

          ALL doctors scared to write perscriptions for pain medication.


          6 unopened bottles of Tecfidera sitting on the shelf @ $6000/ea.

          I hope you all are doing good.

          Comment

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