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Myasthenia Gravis For support and discussions on Myasthenia Gravis, Congenital Myasthenic Syndromes and LEMS. |
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#1 | ||
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Hey everyone! Hope yall are doing well!!! I continue to get IVIG every three weeks and can't live without it.. anyhow They checked a CBC on me this week and my WBC came back really low - at 2.6... has this happened with anyone?
I think I have read that IVIG can lower your WBC.. I'm not on any of the other meds that are listed that can affect it... Unfortunately the past 3 months I have noticed a lot more infections, that have been harder to get rid of, which isn't typical. My ANA is always pretty high, so they have questioned if I have Lupus/sjogrens or other things this whole time..I get rashes and joint aches.. It has been down to 4 in the past, but 2.6 worries me -especially since I am symptomatic (getting sick more).... ugh |
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#2 | ||
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Member
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I also get IVIG every 3 weeks and from 1/2014 through 11/2014 was having many out of range results and chronic anemia although none were low WBC. In July after 6 months of being told by several doctors they didnt know why I was anemic, I took initiative to schedule myself with hematologist and although we havent figured out why it appears I am chronically losing iron (I have an Iron leak!) but with regular iron infusions I am now no longer anemic and am finally starting to getting some relief from the symptoms of sever anemia. I guess my point is perhaps establishing a relationship with a hematologist might help?
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#3 | ||
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Thanks!!! I still haven't heard back from my Dr yet... ugh.. I think that's a good idea- to see a hematologist... My WBC and Hb/Hct have been slowly dropping for months now.. I had NEVER had abnormal results before I got sick with all of this.. with LEMS being high on my list of possible diagnosis, I am always concerned about possible cancers being the cause of things... It could be my autoimmune issues too though attacking my cells.. fun stuff!
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"Thanks for this!" says: | AnnieB3 (12-15-2014) |
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#4 | ||
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Junior Member
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Hi. I don't have a dx of MG (yet) but I do have Lupus/UCTD and with this I have chronic anemia, leucopenia & neutropenia. My average WBC prior to immunosuppression ranged from 2.3 - 2.8. Since Mycophenolate, it now averages 3.1 and my HB is finally stable at 10. My immune system is so wired that I virtually never pick up so much as a sniffle! Perhaps your blood counts will improve as your ANA comes down? Regards, Clare
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#5 | ||
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Grand Magnate
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Ditto on seeing a hematologist. Don't "guess" with a low white blood cell count, especially one that is showing a "trend" of going downward!
Do you take B12 (methylcobalamin) daily?! Annie |
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"Thanks for this!" says: | bny806 (12-16-2014) |
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#6 | ||
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Thanks yall!! My rheumatologist called back today.. said we should repeat it in 2-3 weeks to see where it is.. she said it could be the IVIG or just a sign of worsening autoimmune syndrome.. Since it's been a downward trend with my wbc, hb and hct for the past 6 months, I'm pretty sure in 2-3 weeks it won't be suddenly better!
From what I have read IF it's the IVIG causing the leukopenia that should only be transient (less than 24 hours).. I have had labs weeks after IVIG showing th.e same trend, though this draw was at the end of my infusion last week. She said if it's still abnormal then, they will run more tests Yes Annie - I take methyl B12 5000 daily, i have the shots too, but they are cyano, so I don't take those.. my MCV is usually upper 80's or low 90's.. Before I was sick my WBC was always over 8, and Hb/Hct was NEVER EVER anemic... I am nervous with all the flu around that with a low WBC i am gonna catch something bad... |
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