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    WBC TOO LOW?

    I keep seeing where people are talking about their WBC being too low, and how they are being taken off of certain DMD's because of this. My question is at what point is it considered too low?

    And is there any way to raise your counts?

    #2
    I'm not sure, but I think that what is considered too low might vary depending on the DMT. Since the DMTs have different mechanisms and some are better understood than others and also they have varying risks (whether they're known to cause PML or not).

    I can't remember what my WBC was while on Tecfidera but it was low, and my absolute lymph count hovered at .5 for at least 6 months (blood work every 4 to 6 weeks to confirm) before my doctor convinced me to switch.

    A month after stopping the Tec, my blood work hadn't budged. I'll go this week for another draw to see if it's recovered at all (8 weeks post Tec). I'd like to get those numbers up so I can start another DMT. I wish I knew how long this is going to take.

    As to raising those numbers, I asked her if there was anything I could take, vitamins or whatever. She indicated that it isn't necessarily a good thing to boost those numbers artificially (my interpretation of her explanation), that it's preferred to let them improve "naturally". The gist of it having to do with the idea that revving the immune system might cause a flair (the auto-immune conundrum).

    I think I've read some posts of people having raised their counts somehow. It might depend on why the counts were low in the first place and what DMT they were using. It's a complex issue if you consider all the other health problems people might be struggling with in addition to MS.
    Symptoms 8/09. Dx 1/10. Avonex 2/10 - 1/11. Copaxone 2/11 to 5/13. Tecfidera 5/13 to 2/15. Gilenya 12/15 to current.

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      #3
      I had to stop beta because my WBC was too low. "Neutropenia". It was back to normal after six weeks, but no more beta for me.

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        #4
        Hi msgijo,

        Each doctor has their own range they consider as being too low, but mine dropped under 3.0 (sorry, I can't remember the actual number anymore) on Gilenya and I wound up with some very serious infections. Because of the mechanism by which Gilenya works (trapping certain wbc in the lymph nodes to keep them from attacking the CNS), a drop in wbc counts is expected, but mine just dropped too much.

        Long story, but I was being monitored by doctors other than the ones I normally see. They kept me on the drug much longer than my MS Specialist would have (and results fom my bloodwork were never forwarded to him as requested). That's why it's a good idea to be aware of your neurologist's cut off point early on with these medications, and make sure the results of blood tests have been received and reviewed by him/ her.

        Other than meds like chemotherapy, most meds are stopped and wbc counts are left to rebound on their own. (Usually, that can take up to 2 months). There are some medications used to raise wbc counts, but they are reserved only for certain conditions (like w/cancer teatment or HIV/AIDS). There are a few dietary / supplement recommendations (eating quality protein/ folate and B12) for otherwise healthy people, but still don't think the results are anything significant.
        Kimba

        “When you change the way you look at things, the things you look at change.” ― Max Planck

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          #5
          I was told by my doctor that is the Lymphocyte count that they watch closely. Once you get down to around .5, it's time to consider coming off. Most dmt 's, is expected to come down some. With tec it averages about a reduction of 30% within the first year, and then USUALLY tapers off.

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            #6
            Thanks all.

            During my visit to the MS clinic blood work was done and I saw the results online. I had already been told earlier this year, by my PCP, that my WBC was 'low' but this was the first time that I have actually seen the numbers.

            I am there - defiantly low on Lymphocyte count and absolute lymph count. And I have been on Gilenya for almost 5 years .

            It will definitely be an interesting discussion when I go back to MS clinic in 2 weeks. On last visit the Dr. wasn't inclined to talk about different a DMD because I "looked so good for a 20 year dx". Is that suppose to make me feel better? Lord I hate that hearing about how 'GOOD' I look!

            But that is another problem - Low WBC limits which other treatments I can take. Back to Avonex or the new version of it? But I have this REAL needle phobia. Yeah it is all in my head, but it is there and wont go away. So what else is left?

            Anyhoo thanks all for sharing.

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              #7
              That's too bad about the Gilenya. Perhaps your low WBC isn't low enough to warrant a change?

              My next stop is Gilenya and reading these posts of low WBC and low lymph counts doesn't bode well for me!

              Aubagio might be an option. I wonder if there's anything new in the pipeline that might get approved anytime soon... Isn't that always the question?
              Symptoms 8/09. Dx 1/10. Avonex 2/10 - 1/11. Copaxone 2/11 to 5/13. Tecfidera 5/13 to 2/15. Gilenya 12/15 to current.

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                #8
                for a look at what is in trials right now you can check FS Trials for MS fstrials.com/index.php/clinical-studies/current-studies/rrms?gclid=CMDO07uBq6oCFQVR2godq2i8WA
                hunterd/HuntOP/Dave
                volunteer
                MS World
                hunterd@msworld.org
                PPMS DX 2001

                "ADAPT AND OVERCOME" - MY COUSIN

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                  #9
                  Thanks for the link Hunterd. It contains an application to join clinical trials, not what I'm after. I did find that the MSAA has their new April 2015 MS Research Update on their website if anyone wants to go sifting through there. It's a good list of what's currently in the works. A lot of -mabs and -mods, as I call them. A lot of hurry up and wait...
                  Symptoms 8/09. Dx 1/10. Avonex 2/10 - 1/11. Copaxone 2/11 to 5/13. Tecfidera 5/13 to 2/15. Gilenya 12/15 to current.

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