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Tecfidera and platelet counts

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    Tecfidera and platelet counts

    So I have been on Tec for a full year now. Chugging along and even had an MRI last month that showed a previous spot that was there last year is no longer showing! GREAT! Now, my neuro has been doing blood tests every 6 months. My WBC are great, no problems. Its my platelet count that is the issue. In July 2015, one month before I started Tec my platelet count was 279. In Feb. 2016 it was 188. I had blood drawn this week and now it's down to 105. Nurse called me to let me know and said they will check again in 6 months. Normal is 140-400.

    Here's my thinking. I have been "living" like I was before Tec, ie. drinking too much. Not an alcoholic or anything, but every night. 2-3 drinks. Well I decided, NOPE, I'm not drinking that much anymore or even during the week, so I quit starting last night. I'm just wondering what you guys think about this theory.

    #2
    Tecfidera and platelet counts

    I've been waiting to see if anyone else had a drop in platelet count. I was always around 160,000 -180,000. Been on Tecfidera for over 2 years now. Last week the count was at 130,000. Seems pretty coincidental. I think the range is 130,000-450,000. Will speak with doctor soon.

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      #3
      Wow, that does seem like a strange coincidence! I will stick to my no drinking even if it is the meds and not the Tec, but I am curious now too if it is the Tec. Please keep us posted what the doc says. I am anxious to have my blood tested again in 6 months after my adjustments to see what it is.

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        #4
        Mine has lowered

        But, I am on other meds that I would blame first. Arthritis medicine and aspirin. If you take aspirin with it to decrease flushing it would lower your platelet count.
        God Bless and have a good day, Mary

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          #5
          I took asprin for the first few weeks after I started on Tec, but I haven't taken asprin with it for 8-9 months now, so it's not that. I am on no other meds. I take Vitamin D3 and B12 everyday, but that's it. See the neuro on 12-8-16 so I will talk to him them about it.

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            #6
            Well saw the neuro

            Well I saw the neuro on 12-8-16. He ordered another blood test. Called me on Friday and said my platelets are now down to 83. When I started Tec in Aug 2015 they were 253. So that means in 15 months they have dropped 170 points! He is still adamant that its not the Tec, but I firmly believe that it is. I have an appointment with a hematologist this Wednesday so we'll see what he says.

            The Tec is working for my MS, but I have to admit if I do go off of it I won't miss the flushing and occasional stomach ache. Now I am worried how quickly or IF my platelets will rebound.

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              #7
              Platelet Counts - Update after hematologist appt

              Ok, so I saw a hematologist on 12-14-16 as advised by my neuro for my dropping platelet counts. He AGREES with me that it is caused by the Tec. He actually said "if it walks like a duck and quacks like a duck, it must be a duck". Um yeah, tell that to my neuro!

              So anyways he recommended I get blood tests every 2 months and if my count drops to 60, taking a break from the Tec for a few months to get them back up and then starting again. Yeah, this sounds like a super fun plan.

              So I have an appt with my neuro on 2-2-17 with lab orders to discuss the next step. I am really starting to freak out about what I am putting in my body and what it is doing to me. Have to be honest and say I am seriously considering not taking anything. I don't like playing the guessing game with my immune system.

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                #8
                83 is low!
                With ITP if you get down to 70 they usually have daily blood tests. And if still dropping transfusions are considered.
                It does sound like meds are the cause.
                But ITP and ITP similar conditions do require a trigger and usually once the trigger is sorted out the platelet count corrects.
                I don't think your reduced drinking plan would do much but it won't hurt.
                Hope this helps.

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