Does CIDP cause Fatigue or IVIG treatments

Does CIDP cause fatigue or the IVIG treatments? I was diagnosed with CIDP on March 17, 2016. I’ve had three IVIG treatments since then. I’ve noticed I cramp less. But the carpal tunnel is increasing.I am more fatigued since I started treatment. And I have chronic pain in my calves.
I noted on my CBC report that my WBC, hemoglobin and platelets had fallen into the “low” zone where before the WBC and platelets were normal. Being a cancer patient whose had lots of chemotherapy my hemoglobin is often low but not the WBC and platelets. Do you think the IVIG is causing these low numbers? Did things get better for you as far as fatigue the longer you were on IVIG? Do those of you that have fatigue take prednisone to relieve that symptom? Let’s talk!

I Don’t know about for others but I know for me I have fatigue even without IVIG. But I am also very tired after my IVIG, though that could be the benadryl they give me.

Thanks for your response. Have you been taking IVIG for a long time? I’m having a 100mg every 3 weeks to see if it makes a difference to my symptoms. But after 3 treatments I haven’t seen that much difference. So I ask is the IVIG not working for my particular CIDP or this is just the way one feels when you have CIDP or maybe the best scenario it just takes time to feel the results of the IVIG in my system?

I note that a symptom of CIDP is muscular weakness but I don’t have that. It’s more an overall feeling of fatigue when I climb a hill or take a long walk . . . and you?

Sorry its taken so long to respond…I have been not great lately…I have only been taking IVIG for 4 months so far but like you I’m just not seeing a lot of improvement yet. I have made a little improvement but just not what it seems others are reporting.I have hope that things will improve over time.Just hang in there they will find what works to help you.As for my symptoms I have nerve pain, muscle spasms, muscle cramps, fatigue, and numbness. I also have difficulty walking.

absolutely. and brain fog and lack of mental focus.

Thank you so much for your response. This CIDP was recently diagnosed a few
months ago and it’s thrown a wrench into my life not knowing what to expect
next. Definitely having brain fog and lack of mental focus. The tingling
and discomfort is crawling up my legs. Recently this week I started using a
cane to walk from my house 5 minutes to my studio down a hill because I
feel imbalanced. Tried IVIG for 4 treatments every three weeks, 5 cycles,
noticed no difference. Tried Prednisone no difference and much more
cramping on steroids. I also have night sweats and ankle, feet and calf
cramping in bed. Yikes.
Tell my about your symptoms, my CIDP friend. How long have you had it?

i’ve had it for 6 years.

i’m now using power chair as i have no balance at all.

and my CIDP manifests itself in constantly changing ways, all bad. my
symptoms vary from day to day.

e.g. myfascial pain syndrome and Bell’s palsy and diplopia) that have come
and then eventually left after a month or so and others that are apparently
permanent (BVL and dysgeusia and autonomic dysfunction - i overheat and
feel chilled simiultaneously).

i can’t tolerate corticosteroids and due to an IgA deficiency, i can’t have
IVIG treatment so the only treatment i have at all is cannabis to stop the
severe leg spasms (in IL, medical cannabis is legal for treating CIDP).

autoimmune demyelination diseases seem to run in my family. my twin sister
has Sjogren’s and my younger sister has MS.

i have a rare variant (sensory predominant) of CIDP which is itself
considered a rare disease (50 times less common than MS).

i have been through the medical turnstile and my conclusion is that
neurologists are ignorant of CIDP and are not very bright (i have PhDs in
both theoretical physics and in chemistry - i was a university professor -
and i read all the medical literature and know far more about my disease
than any of the many doctors i’ve seen).

i suggest you decide for yourself how you want to live with it.

i’ve stopped seeing all doctors except my family doctor who works with me
on the various manifestations as they occur. i am not going to spend the
rest of my life in hospitals or waiting rooms and dealing with MD’s who are
not able to do anything anyway and won’t treat me as a partner in dealing
with the disease but just want me be passive and do what they order. i
don’t accept that.

good luck dealing with your disease. i wish i could say it’ll get better
and apparently it does in some people but not me. i’m stuck with dealing
with it until i die.


Hi Richard,

I’m so sorry to hear how severe your CIDP has become! My CIDP is also
sensory predominant. It’s complicated because I have had multiple myeloma
for 12 years, which is now being treated with antibodies. I’ve had stem
cell transplants and lots of chemo, which caused PN. I am also being
diagnosed for possible primary amyloidosis because it is my small fiber
nerves that are most affected. So far the care at Stanford has been
excellent. I’m sorry your experience with the medical profession has been
such a disaster!

all my best,

Dear fitzpayne,

Sorry to hear about your side effects. I have been treated with IVIG for almost 5 years, going every other month receiving 45 grams. Everyone is different, so my reply and others may not be meaningful to you in particular. I have never felt any fatigue after receiving IVIG. I usually feel less numbness in my feet and hands later in the day of receiving treatment. I get EMG’s every six months, and my reports show the disease has not advanced. However, it doesn’t get better, but I am very happy that is has not gotten worse. Regarding “prednisone” - I receive 100 mg (I think) intravenously before getting my IVIG. They also give me two Tylenols and a benadryl tablet, to prevent any reactions to the drug. The benadryl makes me sleeping but wears off after receiving 1/2 of my IVIG treatment. Hope this answers your question.
Hoping you get well, or at not least get any worse,
Best regards,