CIDP , blood disorders and organs

    • Anonymous
      April 19, 2009 at 6:40 pm

      Hi Everyone ,

      I have read post from this site for years and have appreciated all who share their stories for many years ….. finally decided to post 🙂
      I have had CIDP for seven years now and have had the ups and downs of IVIG and steriods . I choose not to go on a regular schedule out of fear that the treatments will stop working and for the toll it takes on my body ….. Which I know you all know the joys of ! My question is during the last 2 years I have experienced huge changes with my hemoglobin and my levels drop dramatically. I just got through a 5 day round of IVIG and steriods and when I started my hemoglobin was 9.4 and two weeks later it is now back up to 10.2. We have noticed that IVIG not only stops the progression of CIDP but also changes my blood levels. My doctors are convinced (as am I ) that this condition also attacks my red blood cell development . Has anyone else had this happen ??
      Thank you so much for your input !
      Kimberly

    • Anonymous
      April 19, 2009 at 10:24 pm

      Kimberly,

      Babesia is a blood parasite in the same family as maleria which causes red blood cells to burst. It is also a tickborne disease (TBA). Many individuals with TBA’s repsond well to IVIG as it boost the immune system when the illness had evaded it.

      While this may be an area that you have already explored with your drs, I mention it in case you have not. Otherwise, I know nothing abt changes in RBC’s with regard to CIDP.

      I wish you well,
      Erin

    • Anonymous
      April 20, 2009 at 2:19 pm

      Hi Kimberly, I sent you a private message(pm). Again Welcome to The Family.:)

    • Anonymous
      April 20, 2009 at 6:11 pm

      [QUOTE=Beachcomber] We have noticed that IVIG not only stops the progression of CIDP but also changes my blood levels. My doctors are convinced (as am I ) that this condition also attacks my red blood cell development . Has anyone else had this happen ??
      [/QUOTE]
      Hi Kimberly, welcome to the forum. During the time I’ve been receiving IVIG I never experienced changes in blood levels with the exception of antibody levels neither have I read anything about that. I am not an expert but I don’t see how adding more antibodies – that’s what the IVIG consists of – can have any influence on red blood cell development. Antibodies are created by white and not red blood cells. Your increase of hemoglobin might just be coincidental caused by other factors.

    • Anonymous
      April 20, 2009 at 10:43 pm

      People with one autoimmune process–like CIDP–are also at a slightly greater risk of other autoimmune processes. One of the other autoimmune problems that also does better with steroids or immunoglobulin is autoimmune hemolytic anemia. This is where antibody attachs the red blood cells and causes them to break apart (often when the RBCs pass through the spleen). It sounds like you stay anemic since hemoglobins of 9.2 or 10.4 are low. One way to check about autoimmune hemolytic anemia (AIHA) is to check a reticulocyte count when a blood test is done for hemoglobin. Reticulocytes are the young red blood cells. If a person has a hemolytic anemia, the reticulocyte count will be higher because the body is trying to make more blood in order to keep up with the destruction–that is, the body is trying hard to compensate for the autoimmune process. A direct Coomb’s test will show if there is antibody on the red blood cells, but this test should be done as long after administration of immunoglobulin as possible to reduce the small chance of a false positive.

      Another possible cause for anemia that responds to immunoglobulin or steroids is a vasculitis (such as from lupus/SLE) in which inflammation in the blood vessels causes blood to break apart. This is a different autoimmune problem.

      Having a hemoglobin as low as yours is would make you more tired. If fatigue is a big issue with you, it might well be worth seeing a hematologist to see if the cause of the anemia could be found and corrected so that you would have more energy. A deficiency in B12 can cause anemia and a neuropathy like CIDP or make the neuropathy of CIDP worse. People with B12 deficiency typically have red blood cells that are larger than usual (MCV is higher than normal). It is definitely worth treating B12 deficiency if that were a problem.

      WithHope

    • Anonymous
      April 22, 2009 at 10:49 pm

      Thanks everyone ….

      I think you hit the nail right on head with your post …… that is what we had been suspecting but I had not heard of that happening before . I had noticed last time after I got all my treatments that my anemia just sorta corrected its self …. I was stunned . So we were thinking that perhaps if it worked again then it must be hemolytic anemia or perhaps it was just a fluke . But …. once again it brought my hemoglobin up again . I do know he did the test to see if my red bloods cells were developing normally and they were not . Usually they last 120 days and mine were only lasting for 60 or so …..
      This condition certainly affects more than your nerves and can affect organs as well . Makes me wonder why for some people its just nerves and for others it can be blood , organs or whatever it chooses ???:confused:

      [QUOTE=WithHope]People with one autoimmune process–like CIDP–are also at a slightly greater risk of other autoimmune processes. One of the other autoimmune problems that also does better with steroids or immunoglobulin is autoimmune hemolytic anemia. This is where antibody attachs the red blood cells and causes them to break apart (often when the RBCs pass through the spleen). It sounds like you stay anemic since hemoglobins of 9.2 or 10.4 are low. One way to check about autoimmune hemolytic anemia (AIHA) is to check a reticulocyte count when a blood test is done for hemoglobin. Reticulocytes are the young red blood cells. If a person has a hemolytic anemia, the reticulocyte count will be higher because the body is trying to make more blood in order to keep up with the destruction–that is, the body is trying hard to compensate for the autoimmune process. A direct Coomb’s test will show if there is antibody on the red blood cells, but this test should be done as long after administration of immunoglobulin as possible to reduce the small chance of a false positive.

      Another possible cause for anemia that responds to immunoglobulin or steroids is a vasculitis (such as from lupus/SLE) in which inflammation in the blood vessels causes blood to break apart. This is a different autoimmune problem.

      Having a hemoglobin as low as yours is would make you more tired. If fatigue is a big issue with you, it might well be worth seeing a hematologist to see if the cause of the anemia could be found and corrected so that you would have more energy. A deficiency in B12 can cause anemia and a neuropathy like CIDP or make the neuropathy of CIDP worse. People with B12 deficiency typically have red blood cells that are larger than usual (MCV is higher than normal). It is definitely worth treating B12 deficiency if that were a problem.

      WithHope[/QUOTE]