• April 7, 2012 at 12:43 am

      does anyone else with cidp have an iron defiency anemia? I didnt really give a lot of thought to it until it was picked up in some recent blood work that my iron level is very low and i am quite anemic. I guess that’s one of the things we need to be careful of with cidp—that we dont just assume everything is due to the disease. I have been experiencing much more fatigue and weakness. Since these are the classic cidp signs i just ignored it.

    • April 7, 2012 at 11:43 pm

      My daughter had low iron too when she 1st started getting IVIG. I did some research & found out it was from the IVIG. I decided to give her a multi-vitamin with iron every day. Within 2 months her iron was within normal range & has been ever since.


    • April 8, 2012 at 8:12 pm

      i wondered that too Kelly. right now i am back on the loading dose of ivig.
      i have been taking iron supplements three times a day, along with a multi vitamin. I have been having very heavy periods for the past few months as well… probably the combination of everything isnt helping. How is Emily doing? i hope still good ๐Ÿ™‚

    • April 8, 2012 at 9:05 pm

      Hey Lori – Emily is doing really well! Thank you for asking. She’s skating in a competition with her precision team next weekend & a solo competition on Mother’s Day. It’s going to be the BEST Mother’s Day present watching her skate. The Easter Bunny brought her a new bike today & she is beyond thrilled. She’s been riding her bike every day for the last few weeks (loving spring this year in MI!) & it’s also helping with her skating jumps. Her hips were really affected by her CIDP & the bike riding has been great at loosening up those muscles again. Now that she has a bike that is the right size I’m sure it will help even more!

      Have you tried also adding iron rich foods to your diet? Emily isn’t a meat eater so she eats lots of spinach, potatoes, etc. Here is a list of iron rich foods that I find helpful:

      How are your potassium levels? Emily has naturally low potassium & so she has to eats lots of foods to help with that too.

      Happy Easter!

    • April 8, 2012 at 11:27 pm

      thx Kelly for the info ๐Ÿ™‚ I have low potassium, low blood pressure, low sodium. The BP has always been low, even before i got cidp. Dont know about the others, i never had them tested until after cidp. Yes on the iron rich foods–I have even been forcing myself to eat liver, which is horrible. I’ve been cooking a lot with spinach, which I do like.
      Sounds like Emily is doing well and living like any other little girl her age, despite the cidp ๐Ÿ™‚ Good for her—shows what a great job you have done as her mom and advocate to got her through this—not an easy task, I know.

    • Anonymous
      April 15, 2012 at 2:05 am

      Anemia – Yes, recently found ulcers perhaps caused by prednisone. On lots of iron, prilosec for breakfast and pentasa to help heal the ulcers. Arrgh.

    • April 15, 2012 at 2:24 pm

      never considered ulcers Took. my dr said i should start testing for blood loss to see whats causing the anemia— do ulcers bleed and cause blood loss? i just assumed if i was having blood loss (other than my menstrual cycle blood loss) that i would know it???
      how are you handling all the iron? It does not constipate me as ive read it can–but it does make me feel nuaseaus.
      i was only on prednisone for a few months, so hopefully not long enough to cause ulcers.

    • April 17, 2012 at 4:16 pm

      I’m a 52 year old male and I’ve been receiving IVIG every two weeks for my CIDP since 1999. I too was feeling exceptionally fatigued & just attributed it to the CIDP. It turns out that receiving regular infusions of IVIG eventually has the effect of washing out the body’s iron. My neuro detected an iron deficiency in my blood work back in 2008 & prescribed a daily dose of 150mg of Poly-Iron (Polysaccharides-Iron). It’s manufactured by Cypress Pharmaceuticals and must be dispensed by a pharmacy. It’s not an OTC medication, but it has brought my iron levels back to normal. It’s really been a life-saver for me.
      However, I’ve recently had to take mega-high level doses of Vitamin D on two separate occasions. I’m not sure whether this newly developed vitamin deficiency is a result of my regular IVIG infusions or is just an unrelated condition.

    • April 18, 2012 at 12:44 am

      Thanks for the info—I will soon be switching from ivig to rituxin. I will be curious to see if my iron levels go up once stopping the ivig. I am currently taking 325 mg 3 times per day of over the counter iron plus eating an iron rich diet. My current level is 11 which one dr just told me isnt too bad.