Announcement

Collapse
No announcement yet.

4th case of PML reported on Tecfidera

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

    4th case of PML reported on Tecfidera

    The MedPage Today article is titled, "Will 4th PML Case Change Tecfidera Risk Profile?

    Most recent case occurred in patient with only moderate lymphopenia

    http://www.medpagetoday.com/Neurolog...clerosis/54704

    Quote, "Biogen has reported a fourth case of PML with Tecfidera -- this one in a patient with only moderate lymphopenia -- to U.S. and European regulators, raising new questions about the drug's safety.

    The latest case occurred in a 61-year-old female with relapsing-remitting multiple sclerosis, who'd been taking Tecfidera for 22 months before being diagnosed with PML.

    She had grade 2 lymphopenia, at 600 cells/mm3, for 6 months before developing symptoms of PML, which included left arm weakness and apraxia, according to information provided to MedPage Today. Severe grade 3 lymphopenia occurs when lymphocyte levels drop below 500 cells/mm3.

    "To my understanding, at least one of the cases did not demonstrate grade 3 lymphopenia but only grade 2," said Ari Green, MD, of the University of California San Francisco. "This complicates using lymphocyte counts as a means to track risk of PML, as a not insignificant portion of patients on Tecfidera develop grade 2 lymphopenia." (Those estimates range from 11% to 21%.)

    Few other details about the case were made available. Neither Biogen nor the FDA or the European Medicines Agency (EMA) would comment further on the case.
    This is not the first case of a patient with moderate lymphopenia developing PML while taking a dimethyl fumarate product. Last April, researchers reported in the New England Journal of Medicine the case of a 64-year-old female patient who died from PML after 2 years on a compounded formulation of dimethyl fumarate for psoriasis (Psorinovo). Her lowest lymphocyte count was 792 cells/mm3.

    Another patient taking Biogen's Fumaderm dimethyl fumarate brand for psoriasis developed PML with only moderate grade 2 lymphopenia at a range of 724 to 738 cells/mm3. The case was reported in Neurology.

    Although questions remain about the best way to use lymphopenia to determine PML risk with Tecfidera, some experts have raised concerns about the interval of lymphocyte screening on the drug's label.

    Tecfidera's label calls for a baseline lymphocyte count, followed by another check-in after 6 months and then regular checks every 6 to 12 months thereafter. Physicians should consider stopping therapy in those whose levels stay below 500 cells/mm3 for 6 months.

    However, European regulators recently recommended checking lymphocyte counts every 3 months, and reconsidering treatment in patients who maintain grade 3 lymphopenia for longer than 6 months.

    The EMA also recommends checking lymphocyte count monthly for those on Fumaderm, and stopping therapy in all patients who develop grade 3 severe lymphopenia.

    Tecfidera's label also only mentions one case of PML, which is outdated given the total of four cases now reported.

    Nor does the label discuss the potential role of JCV antibody testing to determine PML risk -- despite the fact that many clinicians are already performing such screening on MS patients. They use it, however, mostly to determine whether patients should go on natalizumab (Tysabri), which carries a stronger risk of PML than most other MS drugs.

    Tecfidera is currently seen as a safer choice if a patient is indeed JCV antibody positive.
    "The risk [of PML] does not appear to be high enough to warrant routine assessment of JCV antibody status in all patients on Tecfidera," Green said. "Many antimetabolites have a low risk of PML and I would consider both Gilenya and Tecfidera in that risk class for now."

    Most of the specialists contacted by MedPage Today said they're not so concerned with FDA label changes, but they would like drugmaker Biogen to be more forthcoming about the details of the PML cases.

    "I think the current FDA warning letter is sufficient -- although without a risk mitigation and registration program from the FDA we can't be sure that there aren't more cases for Tecfidera than what has been reported," Green said.

    "I have no opinion about what FDA should do," said Dennis Bourdette, MD, of Oregon Health and Science University. "I would like Biogen to be providing more information and follow up on the cases that have occurred." End Quote>

    #2
    Thank you Myoak for this infor. but I am so confused, my last wbc was 5.2 and lymphocytes was
    1.0 is that considered to be low or moderate? My neuro said it was okay but with this new infor. I am not sure.
    God Bless Us All

    Comment


      #3
      Oh no, the poor woman who got PML.

      This is immediately ringing warning bells for me. I have grade 2 Lymphopenia at .6 level. Have to retest in about a month and I am really hoping my lymphocytes have recovered a bit.

      We are all just guinea-pigs in a rock and hard place, really.....

      Comment


        #4
        It's sad, so sad ...

        I have been critical of Biogen's lackluster response to the PML risks of Tecfidera. Considering Tysabri is the MS PML poster child one might expect Biogen to be proactive. I still believe Tecfidera is a wonderful medication, but patients deserve to know what their risks are and that requires Biogen to pony up for JCV testing.

        Comment


          #5
          Originally posted by REG53 View Post
          Thank you Myoak for this infor. but I am so confused, my last wbc was 5.2 and lymphocytes was
          1.0 is that considered to be low or moderate? My neuro said it was okay but with this new infor. I am not sure.
          Those figures are good. Your WBC is normal (low is below 4), and your lyphocytes are at the low end of normal.

          Comment


            #6
            Hi Reg,

            The good which will come of this topic is that conversations with doctors will ensue. Low lymphocytes cab be subjective. What is acceptable to one doctor is not to another in the definition of "low".

            Better monitoring and more conversations between patients and doctors will lead to better outcomes. Remember, that 4 PML cases have appeared in 35,000+ on tecfidera. It is tragically unfortunate. But it is still a rare occurrence.

            And will remain a rare occurrence with better monitoring, IMO.

            Your numbers do not appear dangerous, Reg, but that topic should only be addressed by your treating physician. Best to you!

            Comment


              #7
              Thanks Mrs. Chips and Myoak.

              My next blood test is in Jan. I am taking a copy of this report with me.
              God Bless Us All

              Comment


                #8
                Remember, that 4 PML cases have appeared in 35,000+ on tecfidera. It is tragically unfortunate. But it is still a rare occurrence.

                That 35,000 figure is a misquote from this article titled, "Tecfidera Linked to PML Once Again" dated July 20, 2015 about a previous PML case.

                http://multiplesclerosis.net/news/te...ml-once-again/

                "Tecidera was approved in the US for the treatment of relapsing forms of MS in March 2013, and, since that time, has been used by more than 135,000 people worldwide."

                My apology for entering 35,000 when the figure actually was 135,000!

                But even that number has changed; the most current estimate I can find is about 170,000 who have taken Tecfidera.

                Oddly enough, when I called Biogen to get the approximate numbers on their meds they refused to give me even approximate numbers. Talk about lousy public relations! Why is general information guarded like top secret? Makes no sense, IMO.

                Comment


                  #9
                  Biogen's Lack of Communication

                  Hi to all,
                  I am a previous Tysabri user. I voluntarily participated in both of the Stratify studies. The reason I participated was because I knew these blood draws would give us more information on the risk level of Tysabri. I have long since realized the information is strictly for Biogen's use, not the users of the drug. I remember at one time long ago, simply asking how many Tysabri users had developed PML. They responded by replying that this information was not available for them to disclose. What a bunch of horse hockey, don't you think? I continued to participate because I have so many family members with this disease. I hope this will help them down the road even if it didn't help me. We are all in this together. And it is wonderful how we help each other through the tangled web of information. I know I thank others who have helped me. Hang in there!

                  Shyla

                  Comment

                  Working...
                  X