What is "normal" bloodwork with CIDP ?

It’s hard to say because every person’s blood work is going to be different. Emi’s WBC & RBC are slightly lower than normal her protein is high, due to the IVIG infusions and her hemoglobin is also slightly lower than normal.

Everything else usually checks out fine.

I would want to talk with the dr’s about your plasmapheresis. I’ve read that can cause all kinds of problems with your immune system if they are removing too much blood too quickly. I’d probably start to look there.

Good luck. I hope you hear some good news soon.
Kelly

I have not had to have any CIDP treatments since undergoing a 9 month chemotherapy regiment back in 2003, but before that, I was on every treatment imaginable. Twice weekly IVIG for about 8 months, steroid infusions twice weekly for 21 months, 17 plasmaphersis treatments, imuran… My bloodwork was always fine, except when I was on Imuran, then I had to keep having it checked often for possible liver damage, as it is an immunosuppressant. While on chemotherapy, the goal was to get my white cell count down to zero, then I could go off of it & allow my system to reboot.

Since 2003, everything has been fine, except my cholesterol. I think I will now have to just handle that by going on Lipitor…
Pam

My bloodwork has always been fine except when I was having IVIG/prednisone/too much tylenol for pain. And even through most of that my bloodwork was totally normal. The only change happened when my kidneys and liver stopped being quiet and I got elevated protein levels.

[COLOR=”Purple”]Hi Ken, I have CIDP and get lab work once a month before my infusion of IVIG. In 16 months my lab work has never been abnormal. My hemoglobin runs on the high side of normal but always has. Just having had your shunt put in 2 weeks ago the elevated wbc’s could certainly point to an infection. You don’t say how low your hemoglobin is , but being on coumadin can also cause an anemia ie:slow blood loss from the upper or lower GI tract. Vicki[/COLOR]

Ken,

I doubt plasmapheresis is likely to make much difference with respect to anemia. Although it looks like there is a lot of blood outside your body, I am told it is less than half a pint. With the rinse-back (flushing the lines back into you with saline), you should not lose too many red blood cells.

I am slightly anemic, regardless of whether I have had plasmapheresis or not. My primary care doctor has told me that many people with chronic diseases have mild anemia. I am not sure if I quite believe it, but he is not one to blow me off either.

Other than the anemia, my blood numbers are generally in line with normal, even with CellCept. My white cell numbers are on the low side, with the leukocytes especially on the low side, but still within the normal range.

By the way, why do they put in a catheter every month? I have a tunneled catheter that saves me from having minor surgery once a month. It has its problems (no complete showers, no swimming, lots of dressing changes, good chance for infection or thrombosis without vigilant care), but it is definitely easier on my body than have one put in repeatedly.

It sounds like you are have lots of infection issues. I trust your doctors must be giving you appropriate antibiotics when they show up. Godspeed in your efforts and care.

MarkEns

Ken – Since both plasmapherisis and IVIg infusion deal with blood products – (PP “washing your plasma” by removing it from your total blood makeup and replacing it with man made albumin) – OR – (by infusion of immunoglobulin “overwhelming” your own antibodies thus making your system march in line with the infused blood product) – Your blood work will always reflect the manipulation done to your system by these methods.
So there is no real gauge of what is “normal” — lab work on day 5 after IVIg is different than lab work on day 25 – protein levels, antibodies etc. The sheer volume of blood product exchanged in PP will alter lab results – And if you are also taking CellCept, that will be reflected as well.

Ken, I am getting IVIG but no bloodwork every time. My most recent bloodwork in between IVIG’s was more or less normal except high eosinophils. That has been high since my first CIDP symptoms but the doctors don’t know what is causing it. It’s often caused by parasites but they couldn’t find any.

[QUOTE=norb]Ken, I am getting IVIG but no bloodwork every time. My most recent bloodwork in between IVIG’s was more or less normal except high eosinophils. That has been high since my first CIDP symptoms but the doctors don’t know what is causing it. It’s often caused by parasites but they couldn’t find any.[/QUOTE]

Norb, I’m curious,
Parasites? What kind of parasires? Mesquito bites? Something injested? I’d really like to figure out how I contracted CIDP…. I want to leave no stone unturned. This is interesting.

Hi

I have CIDP but I’ve only had one blood test and that was at the very beginning! I read this thread to learn, too.

Helen 🙂

norb, parasites? i was just discussing the results of my bloodwork from 2 weeks ago with my pcp monday, my e’s were high also, and have been ever since my first paralysis event back in 05. i was told that high eos meant there was an allergic reaction going on in my body, inside not skin level-makes some sense to me with some of the symptoms i’m having-but what is bringing it on is another mystery. my dr is looking into that and might have an answer for me when i see him next month. for the last few months i’ve been having swollen lymph nodes that are really uncomfortable and my bloodwork was neg for an infection, my thyroid is also still out of whack for unknown reasons.
ken, i haven’t had a normal blood test since coming down with gbs-chronic relapsing/remitting back in aug 05, otherwise i would love to say its normal to be abnormal after onset. there isn’t a whole lot known about things like that, that are published anyway, thats why more research is needed. sorry.

Blood workups can be in the normal range but that doesn’t mean everything is OK. It is only 1 tool for looking for answers. Bonny gave an excellent answer to your question. Most people probably looked at your question but don’t have an answer either. Sometimes we just don’t know! Good luck in your continued search 🙂

[B]Cheryl & Danlwil[/B], An eosinophil is a type of white blood cell. Since my eosinophilia first showed up in Thailand in 2001, we suspected some kind of parasite infection, common in Asia. We are not talking about insects or insect bytes although these may be transmitting viruses or parasites into the blood. Tap water in Thailand is not safe. In the village where we lived for three months I only used it for brushing teeth but that may have been enough to get parasites into my body. I also injured my big toe in a public waterfall pool, an injury that wouldn’t heal for weeks.

When we returned to the US, I underwent a series of tests for the most common parasites but nothing was found. We finally gave up since the eosinophilia didn’t seem to create a problem for me. Other possible causes like allergy, lung diseases, eg Loeffler’s syndrome,vasculitis (inflammation of blood vessels), eg Churg-Strauss syndrome,some tumours, eg lymphoma,liver cirrhosis ,some antibody deficiencies; not typically AIDS, other rarer skin diseases, eg dermatitis herpetiformis did not seem to apply here.

I already had the first symptoms of neuropathy when the high eosinophilia count showed up but there was no connection made. It took 4 more years for the neuropathy symptoms to progress until finally the diagnosis of CIDP was made in 2005. Neither the neurologist nor the oncologist made any connection between eosinophilia and CIDP. However, they did seem to find it “interesting”.

In September, there was a discussion of this on the German forum. One member, Johannes, told me that he has read in several places that parasites can actually trigger GBS or CIDP when other factors are present like a genetic predisposition and/or malfunctioning of the system that destroys self-immune components. He said most blood tests are automated and only find the most common parasites in the blood. Other parasites can live in tissues or cells and are only found with darkfield microscopy, something that is rarely done.

He also mentioned one theory proposed by a Dr. Enderlein, that some viruses and parasites may be related and a virus living in cells may just be an earlier stage which develops into a parasite.

Unfortunately, Johannes could not remember where he read all this but he sounded pretty knowledgeable.

CIDP itself does not cause any abnormality in the blood. Blood work is done at the beginning to exclude other diseases. Any bloodwork abnormalities that develop are a complication of treatment, steroids, plasma exchange, cytotoxic etc. Not due to the neurological disease. In essence bloodwork in CIDP is as normal as in Mr Average person. DocDavid

thank you Norb for your explanation…
Very insightful.

Although it is an EXTREMELY difficult thing to do… I’d love to determine the “cause” in my situation.

Again… Thanks!

[QUOTE=DavidBod]CIDP itself does not cause any abnormality in the blood. Blood work is done at the beginning to exclude other diseases. Any bloodwork abnormalities that develop are a complication of treatment, steroids, plasma exchange, cytotoxic etc. Not due to the neurological disease. In essence bloodwork in CIDP is as normal as in Mr Average person. DocDavid[/QUOTE]

In my case I had some more bloodwork done after my initial treatment with IVIG stopped being effective (about 18 months after dx). The goal was to look for an underlying condition, specifically multiple myeloma, which had not been identified in the initial screening before my diagnosis.Not having any underlying condition of this sort, my results were normal, or “Mr. Average” as you suggest. In fact a hematologist told me “your blood is beautiful”. This after IVIG, Prednisone, Imuran, as well as two years of CIDP symptoms.

[QUOTE=danlwil]Although it is an EXTREMELY difficult thing to do… I’d love to determine the “cause” in my situation.[/QUOTE]

I feel the same. It bugs me not knowing what caused my CIDP. I just can’t believe that it simply would start out of the blue.

[SIZE=”2″][COLOR=”Purple”]Hi Ken, I think the answer to your question is posted above by David Bod. He is our friend from across the pond, a doctor who also has CIDP. take care, Vicki[ATTACH]894[/ATTACH][/COLOR][/SIZE]

Hey there,
I didn’t know anything about coumadin (warfarin) and when the Home Health nurse came out to draw blood she told me about how green leafy vegetables effect the bloods coagulants. So today I looked it up and did I get an awakening. I have taken zinc for years as it helps my brusing “heal” faster but now I see I shouldn’t take it at the same time as I take coumadin as it says in the article, “Absorption and activity of warfarin may be decreased by iron, magnesium, and zinc.”
ALOT of Good information here:
[url]http://www.uspharmacist.com/oldformat.asp?url=newlook/files/Drug/Warfarin.htm[/url]

Hi Ken,
I have read lots on CIDP and I have never read of any common blood work abnormalities with CIDP. Frequently, there is an elevation of protein in the cerebral spinal fluid, but no blood work abnormalities.

How long have you taken Cellcept? I ask because my husband started Imuran in December with all his blood work within normal ranges. Within 13 days of taking Imuran, he had elevated WBC, lowered RBC values, lowered hemoglobin values, increased lipase, increased calcium, lower hematocrit.

His neurologist had two queries 1) sensitivity to Imuran or 2) infection that went rampant when the Imuran knocked down his immune system. He is now off Imuran, and the neuro wants to try Cellcept next.

The more I read stories like yours, the more cautious I become about immunosuppressants like Imuran or Cellcept. There seem to be large numbers of people that do well on both those drugs, but there are those that experience things like sepsis which seems to become life threatening very quickly. You say your doctor says you have a blood infection now and had a lung infection in October. Both sound rather serious. My first question to the doctor would be “is this related to Cellcept and should I come off it?” And my second question would be “how are you going to treat my blood infection?” And my third one would be “should I be in the hospital?”
Good luck.
Laurel

Ken,
Sorry you’re so frustrated. Unfortunately even those of us with this condition don’t always know the answers. Do you trust your doctor to be able to figure this out? If not, Why? Just wondering if maybe you need a physician who is versed in this condition as well as your general well being. I have to agree with some who are suggesting that it may be that your immune system which is purposely being suppressed is making it difficult to ward off infections.
Good luck.
Linda