January 1, 2014 at 10:45 pm #109297
I’m struggling with Anemia and don’t know if it is somehow related to my CIDP. Normal RBC for a male is 12K-14K and you are said to be anemic below 10K. I dropped to 7.6K and am 8.8K and holding as of last week.
My RBC started slowly declining in early 2013 and I was sent to a specialist. The Hematologist found low levels of iron, testosterone, and erythropoietin. No evidence of cancer or anything like that. There was also some suspected internal bleeding. My insurance (Medicare thru Anthem Blue Cross) denied testosterone, and erythropoietin treatments. They approved iron infusions and I had ten infusions until my iron levels were normal, but I was still anemic.
I scheduled a complete colonoscopy last October to see if I had internal bleeding. They found an ulcer that may have been involved earlier, but it was sufficiently healed to not be the current cause. I went to the ER the day before the colonoscopy because I was blacking out and experiencing other anemia related symptoms. They hospitalized me with acute anemia and transfused two whole units of blood the night before the colonoscopy. This brought my RBC from 7.6K to 8.5K and stopped the blackouts and TIA’s.
My doctor finally got my insurance to approve testosterone treatments and I started last month. It will take a couple months to see how this works in getting my RBC back to normal levels.
My insurance originally denied erythropoietin because THEY concluded I had iron deficiency anemia. The doctor proved otherwise and they denied it again last week for some other lame reason. Commentary/opinion: insurance companies cannot see the forest for the trees! They watch pennies (~$400 for erythropoietin) when I may have to undergo another blood transfusion (~$900 per unit). In this day and age of so called Obama Care, the insurance companies have started acting like THEY are our doctors and are putting our health more and more at risk by denying treatments because of their corporate greed related decisions.
There is some evidence that IVIg and Prednisone can bring about anemia. I have not had either treatment since early 2011 and did not have anemia then.
Does anyone have information about anemia being linked to CIDP/MFS?
January 2, 2014 at 1:20 am #109298Lori222Member
I have iron deficiency anemia and cidp too. It was discovered while I was having a series of plasma exchange, I had already had several years of ivig. Upper and lower GI both done–both fine. I just assumed the anemia was due to losing blood monthly due to my menstrual cycle, since there was no blood loss anywhere else.
January 3, 2014 at 1:10 am #109306AnonymousInactive
I was diagnosed with CIDP 2.5 years ago and have been considered anemic the last 2 years. I had four iron infusions when it was first diagnosed but only required two iron infusions this past year. My hematologist checks my levels every 2-3 months. I asked the infusion nurse if there was any relationship between the anemia and IVIg and she said that there was not one. I didn’t think to ask about CIDP and anemia, though.
February 4, 2014 at 9:33 pm #109491
I finally got a Prior Authorization for erythropoietin treatments from my cheapskate insurance. I had my 1st shot 5 days ago. It will take up to 4 weeks to know if it worked or not. In the meantime, my RBC was up a little to 9.1. I still think my anemia is somehow linked to my CIDP.
Thank you Lori and Maddie for your inputs! All comments and experiences about anemia versus CIDP are more than welcome.
February 5, 2014 at 7:12 pm #109497
I read online about such a case. A patient with chronic inflammatory demyelinating polyneuropathy (CIDP) developed Evans syndrome (hemolytic anemia/thrombocytopenia) 17 months after onset of symptoms.
February 5, 2014 at 8:14 pm #109498
I don’t know why anyone would think there is a connection, except in the sense that everything in our bodies is related to everything else. CIDP is certainly not a preventative for anemia (or anything else), so there will be some coincidence even with no causal relationship.
Does it matter? Is the treatment for either condition affected by having both at once? Would the treatment be affected by knowing the coincidence was more than accidental?
February 5, 2014 at 11:25 pm #109499
JK, thank you for the info! This was very helpful and I’ve learned a lot researching this. I’m planning on asking my Hematologist about ES next week. Maybe she has already done the Coombs test and can put me at ease about ES. I’m anxious about finding the cause of my anemia so I know what treatments will work best for me.
February 5, 2014 at 11:28 pm #109500
GH, CIDP is primarily an autoimmune disorder where antibodies attack the nerve fibers and cause neurologic damage. The connection between CIDP and anemia is in the blood where lymphocytes (from the autoimmune system) no longer recognize “self” (thanks to CIDP). These lymphocytes then go on the attack to remove invading organisms from our body. In doing so, they attack parts of the body itself. There is evidence of this in Autoimmune Hemolytic Anemia (AIHA), Evans Syndrome (ES), and other similar diseases. In these diseases the red blood cells are attacked by lymphocytes and killed off at a rate greater than the bone-marrow can reproduce more red blood cells.
Treatment for these types of anemia can be very similar to treatment for CIDP. Prednisone and IVIg are often used. More recently, Rituximab induced substantial improvement of AIHA and ES recoveries.
At this point I’m more concerned with finding and treating the causes(s) of my anemia since it is more life threatening to me than CIDP.
I hope you never get these complications, and if you do, I hope people will be more helpful than critical to you.
February 6, 2014 at 12:26 am #109501
February 6, 2014 at 12:41 am #109502
Here’s some more information on AutoImmune Hemolytic Anemia (AIHA):
I only want to be helpful, and hope you get the treatment you need, whether the relationship is causal or not.
February 12, 2014 at 1:03 am #109537
Hooray! Idon’t have Evans Syndrome (ES) or Idiopathic Autoimmune Hemolytic Anemia (AIHA). My hematologist had already run all those tests, plus others, and they came up negative.
The erythropoietin shots seem to be working as my RBC was up to 9.6 today. Got a 2nd shot today and am scheduled for a 3rd in 2 weeks. The goal is to get my RBC above 10.0 and see if my system will continue to climb back to normal (12-14) by itself after the treatments. I’ll post an update after Feb 25th.
February 12, 2014 at 6:46 pm #109538
That’s good news. Congratulations. One lesson for all of us to learn from this is to try to find out our own test results. Perhaps too many doctors and too many patients accept the somewhat standard “All your tests are normal.”
Some of my providers’ offices are now using on-line records, including Lab results. And, some of those providers’ workers have stated “It’s required by Medicare.” Regardless of the reason, some of this move to electronic record keeping benefits us in the end.
February 27, 2014 at 5:02 am #109590
2/26 Update: RBC still holding at 9.6 after two shots of erythropoietin and my insurance has denied further shots. My Hematologist will write another letter to my insurance justifying (out of medical necessity) more shots and will be recommending doubling the strength based on the ratio of my weight to dosage.
I’ve been anemic for many months now and, although there has been some improvement, I see no light at the end of the tunnel, yet. I’m not sure what is contributing more to my anemia: some mysterious disorder, CIDP, or my insurance.
March 27, 2014 at 1:48 am #109681
3/26 update: RBC dropped to 9.3 even after weekly shots of erythropoietin. Doctor re-running tests for myelodysplasia to see if there is any evidence of it (the tests were negative 8 months ago).
May 8, 2014 at 3:36 am #109816
Myelodysplasia tests were negative again – hooray!
I’ve been in an RBC holding pattern between 9.2 and 9.6 for the last couple months. Yesterday I was happy to learn my RBC had skyrocketed (ha, ha) from 9.6 to 9.8 since April. Still anemic and still no explanation. Doc says to wait two more weeks to see if I can make it to 10.0+. If not, she will order a bone marrow biopsy and related tests to see if they can find out what is holding back my red blood cell production.
Normal biopsy test results could mean that I have sprung a gastrointestinal leak someplace. So, I’ll get to swallow a camera and wear a blue-tooth recorder for a day or two. If I have to go this route, I hope my insides are sufficiently photogenic and ready for their big photo shoot debut!
November 11, 2014 at 12:03 am #110448
November 2014 update
I had the Bone Marrow Biopsy last month and finally learned what was causing my anemia:
“An abnormal amount of clonal B-cells are present in the marrow, and given the presence of an IgM kappa monoclonal paraprotein the differential diagnosis centers on marginal zone lymphoma and lymphoplasmacytic lymphoma. Too few plasma materials are present in this material and a low-grade B-cell lymphoproliferative disorder involving approx 60% of a hypercellular marrow is detected. Thus, we think the anemia is best explained by the low-grade lymphoma involving the marrow.”
In other words, I have a cancer that is producing too many cloned B-cells that filled up the space needed for my marrow to produce sufficient red blood cells in the same space.
Looks like the treatment will be Rituxan 712mg weekly for 8 weeks. This is supposed to kill off the clonal B-cells. More later…
I believe my CIDP is somehow responsible for my abnormal B-cell production (the doctors won’t rule it in or out), but it could also be the luck of the draw (and I drew the wrong straw, again).
December 29, 2014 at 9:59 pm #110506bny806Member
sorry to hear about your marrow results! ugh.. will the rituxan help your CIDP too, so maybe it will help both? Do they think that the CIDP was a paraneoplastic issue preceeding the cancer? I have anemia (new onset as well).. but my WBC are very low too (normal platlets).. We are just starting the search as to why.. good luck and keep us updated
February 6, 2015 at 8:25 pm #110587
I have now finished my initial 8 Rituxan treatments. My red blood cell production is increasing on its own for the 1st time in over a year! My RBC was 10.4 last week and still climbing (I was so sick of feeling bad while hanging in the 7’s).
I have tolerated the Rituxan well and had only minor itching during initial IV’s. My worst reactions were to the Benadryl (made my legs feel squirmy and crawly) but it wears off in a few hours. I tried without the Benadryl, but the severe itching came back for me. Benadryl at 15MG is the dosage that I stuck with (doctor recommended 25MG, but that was too much for me).
Rituxan has a “half life” of 3 months (compared to just 20 days for IVIg) and I’m scheduled to get a maintenance dose every 3 months for 2 years.
Funny thing about the Rituxan is that I’ve recently noticed my right foot is getting a little more movement in it, not enough to walk or stand on it, but a slight lessening of paralysis. Could it be the Rituxan has helped my CIDP in addition to my anemia? I think it may have, or my body is better able to repair the CIDP related Axion and Myelin damage after the Rituxan treatments.
Rituxan has made me more hopeful after having been paralyzed since 2008.
February 7, 2015 at 10:39 pm #110595
Could it be the Rituxan has helped my CIDP in addition to my anemia?
Rituxin has been reported to improve CIDP in patients who do not respond to standard treatments, usually IVIG or Plasmapheresis (PE). In other words, since a good percentage of CIDP patients do respond, there is a limited supply of candidates to try Rituxin. And, no doubt, an even smaller subset of doctors willing to use Rituxin. Further the issue is clouded when the Rituxin studies include CIDP patients with IgM monoclonal gammopathy and no anti-MAG reactivity.
In the past, others on this site have reported using rituxin. Lori222 and Norb come to mind.
For example, there is this from Norb filed away in the forum history circa 2007: “Yesterday I had my first Rituxan treatment with the new Medicare approved diagnosis of “B-cell lymphoma” which appears to be the underlying cause of my CIDP with antiMAG IgM. Everything went well, 3 more weekly treatments to come.”
Consider looking at this website:
Finally, it is my understanding that Rituxin is one of the drugs used in the Stem Cell Transplant (SCT) clinical trial up at Chicago’s Northwestern University. Cytoxin is the other.
February 16, 2015 at 4:04 pm #110617Penny1951Member
Hi Jim-LA, I am glad that the Rituxan has helped you with the anemia. I will starting it soon, if the insurance company agrees. It is cheaper than IVIG so maybe they will like that!!!
March 8, 2015 at 9:34 pm #110652
An update: My Hemoglobin levels have continued to climb on their own! I’m at 11.5 as of a few days ago, a far cry from the low 7’s of last year. My vitality is the highest I have felt in a couple years! I even tried a Wheelchair Tennis competition at the Ability Expo yesterday and won the guest (target) competition!
At the Expo I saw many wheelchair accessible vehicles and now want to get one for myself. It would give me back some of the independence I lost from the CIDP/MFS paralysis. I learned that Ralph Braun (BraunAbility) has a grant program where they will pay up to 25% for certain disability equipment if you qualify. There are also State by State programs that might do even better (our insurance won’t pay a cent).
If the Ability Expo is close to you http://www.abilities.com I would highly recommend you attend. There are newer technologies available to us who have more permanent damage from Neuropathies like CIDP.
I also learned about travelling with disabilities and who offers the kind of services that would make travelling more friendly to those of who can’t do what we used to do. I met Debra Kerber (founder of http://easyaccesstravel.com) and I can tell you she is queen of disability travel!
I recently returned from a week on each of the following Hawaiian Islands (Kauai, Oahu, and Maui), based on my own planning and bookings, and would gladly share what I learned with forum members if there was any interest. If there is enough interest, we can start a travel topic on this forum and I can kick it off with a little Hawaii advice.
Ok, back on topic: I get my next maintenance treatment of Rituxan on April 9th and will report back after that.
March 12, 2015 at 9:17 pm #110690
This post is intended to correct the “freshness” of my previous post to this topic.
The new spam filters employed on this forum sent my post into their spam closet. They manually released it but it came on here yesterday with a “freshness” of 1 year 3 months old. That took the topic out of the recently active category and posted it where nobody would ever have seen it! They are working on improving their spam filtering so that referencing more than one URL in a comment won’t put that comment in the spam closet as it did to several of my posts.
July 18, 2015 at 9:28 pm #111008
July update: Just had another maintenance infusion of 750mg Rituxan. Hemoglobin was 10.85 prior to infusion, slightly lower than my previous infusion. The possible cause could be that testosterone levels have fallen reducing RBC production. Medicare denied my prescription refill of Androgel (testosterone) and challenged its medical necessity. Doctor has to run a battery of tests to re-justify the prescription. Maybe I will start back up on testosterone replacement therapy next month. If not, Doc will have to look for another underlying cause. Doctor is also getting Medicare to pre-authorize the use of Procrit (erythropoietin) in October if hemoglobin levels stay lower than normal.
The Rituxan treatments have helped boost my body’s ability to repair my CIDP-damaged nerve fibers (Myelin and Axons). I have been experiencing increased strength and muscle movement/control… 7 years post initial onset of GBS/CIDP! The 3 year mark has long come and gone and I still continue to gradually improve. Being an optimist I never really believed in the 3-year scenario anyhow, now I know it doesn’t apply to me 🙂
FYI – Rituxan costs are lower than IVIg or PE costs and your insurance may pay for it more readily. More detailed info about the experimental treatment can be read here:
An April 2015 study by Dr Richard Lewis is here, but there is a cost to subscribe in order to read the full findings:
There is hope out there for those of us who have been injured by this awful disease. I’m now able to flex my feet just this year! It’s a small movement, but I couldn’t do it at all last year! I believe I’m getting closer to being able to stand again… maybe late this summer please! My dependency on my power wheelchair is diminishing. I’m out of it a lot more this year, using chairs and sofas, bench seats at restaurants, transferring myself back and forth without my sliding board!
My outlook on life took a huge step in the last couple months after buying a disability Van I can drive myself and meeting a wonderful woman. These events coupled with the Rituxan treatments have me feeling like I’m a new person. I’ve been travelling, drove to Las Vegas by myself! Planning more travel – plane, train, and auto! I’m starting an aggressive physical therapy program next week and hope to continue my improvements.
Sorry I’ve not been posting on these forums as regularly as I used to, I’m just not home at my computer as much. I wish all my friends here the very best and encourage you to keep a positive outlook. Don’t let those with a negative outlook pass it on to you. Keep trying different things, new things, things that may not be completely validated… be a pioneer for the rest of us if you can.
May 14, 2016 at 1:50 pm #111480ShaunWesleyMember
I was diagnosed with CIDP two years ago and have had two IvIg treatments so far with Privigen. A recent blood test has shown that I have pernicious anemia. I am a 51 year old male and my Doc is a little concerned that I am anemic. We have just taken a blood test, to test for myeloma and HIV, which is freaking me out. My general Doc is unsure if there is any relation to CIDP and or treatments for it that may cause anemia. In reading this forum, it sounds like it may not be totally uncommon? I believe it is nearly impossible for me to have HIV, I have been tested in the last two years, and I think the coincidence of having CIDP and Myeloma a little unusual. Has anyone else been diagnosed with pernicious anemia? Any info would help to ease my mind!
May 14, 2016 at 6:47 pm #111481
Shaun, I don’t have it, but here’s a link to some information on it:
Note that it can be caused by an autoimmune condition, so it seems that their could be some connection with your particular form of CIDP. Does it matter though? If the diagnosis is correct, then it can be treated (and it should be).
June 14, 2016 at 9:19 am #111585
I am new to CIDP and had my first treatment with IVig in May. After my treatment I became short of breath and had chest pain with any activity. By day 7 I found myself going to the ER with DX of anemia and put thru the ringer for elevated CPK = full Cardiac work up. I also had small blisters covering both hands,all of the skin pealed of within 2 weeks and still small blisters popping up on my hands and feet more than one month later. My Neuro is sending me to a Neuro Muscular specialist and my rheumatologist thinks I will require nonstandard treatment but I am not exactly sure what he means by that. I am glad to find others willing to post details about their challenge’s with CIDP.
June 14, 2016 at 7:00 pm #111588bny806Member
sorry to hear about your post IVIG experience – the first bit i would get Chest pains with infusions and rashes.. we found that slowing down the rate helped tremendously… I had the exact same thing – blisters on my palms that were itchy… also some ezcema spots on my legs popped up…. with rate, and now doing ivig for 5 years, it has all simmered down and i only get rashes when i Don’t have my ivig, or get exposed to sun..
drink LOTS of water with your IVIG as well, which will help..
Good luck, sorry you’re a member of this club! 🙁
June 15, 2016 at 10:11 am #111590
Thanks for reply, I am not sure that they are planning to offer me IVIG again because of the anemia. I have to do something soon because I seem to be getting worse week to week. I guess not knowing what’s next is a little scary not knowing. Thanks again
June 15, 2016 at 2:54 pm #111594
tucmur, has you neuro looked into Plasma Exchange for you? Or SCIg?
July 8, 2016 at 2:16 pm #111638
Nothing new here, just waiting on my appointment @ Duke in Sept. I’ll post again if anything changes.
September 16, 2016 at 8:04 pm #111768
I received another maintenance infusion of 750 MG Rituximab yesterday through a Cedars-Sinai (Center of Excellence) affiliate program here in LA. They slowed the infusion rate this time (to 4 hrs) because I passed out last time when they ran it fast (2 hrs) per my stupid request. I have 2-3 more treatments every 90 days and then I’m done.
My Hemoglobin count is now 11.8, just a little below low-normal (12.0) for my age. My CIDP is still in remission since 2009 and I believe the Rituximab helped with that… maybe has helped to permanently keep it in remission too!
I continue to get more movement in my legs and feet, albeit very slow, but movement nonetheless. The Rituximab has also helped to allow my body to heal Axonal and Myelin damage beyond the typical 3-4 year mark. I can move a few toes where I could not last year.
My opinion is that Rituximab may be the best new treatment for CIDP in addition to HSTC therapy.
Did you know that the name of this drug isn’t random? It is defined by the World Health Organization: Rituximab is made up of RI the unique name, TU the target (misc tumor), and XI the source (chimeric) and MAB=monoclonal antibody. The MAB category of drugs is the latest scientific breakthrough and has produced Rituximab and Pembrolizumab (Keytruda – the Jimmy Carter miracle cancer drug). See some of the drug naming conventions here:
My next Rituximab treatment is just before Christmas.
Is anybody else in our community getting the drug? What is your experience? Please share with us so we can all learn and keep abreast of treatment options.
January 20, 2020 at 6:27 pm #117406Caitlin DeAmbraParticipant
Thank you so much for posting! I know it was some time ago, but I’m going through something similar. My hemoglobin, hematocrit and RBC are all low, and have been decreasing for about 18 months. However, my TIBC is low and transferrin is low normal, so I was curious to know if CIDP can cause anemia of inflammation/chronic disease. My eGGR had also been going out of whack, then it’ll be fine, then I’m back to suddenly level 3b kidney disease. There’s no lead up to it, my kidneys are just suddenly in and out of ‘acute kidney failure’.
For most of my life doctors just want to blame everything in CIDP, and stop doing any tests, which is really frustrating! At this point, I’m lucky to have a really amazing hematologist in an oncologist office who loves rare diseases and weirdness. Well, I’m your girl!
Jim-LA, thank you for sharing! I’m ready glad I found this post, it gives me hope that doctors are working to figure out what’s going wrong.
Currently my HGB is sitting in the low to middle 9s, but my bloodwork is a trainwreck so there are positive results all over the board: WBC, RBC, Hemoglobin, hematocrit, Neutrophils, eGFR, Albumin, TIBC, A/G ratio (0.6) are all low. Calcium is high off and on.
Next week I see the hematologist again.
February 6, 2020 at 11:20 am #117457Beatrice NewcombParticipant
I am a 69 year old female diagnosed with CIDP in January 2017. Spent 5 months in hospitals and rehabs due to paralysis from neck down, with limited movement of hands. After Plasma exchange, IVIV, chemotherapy and high dosages of prednisone, by June 2017 I was able to walk and do daily chores. Continued on IVIG regime every 4 weeks. In February 2018, I was diagnosed with aplastic anemia. All blood work totally bottomed out — platelet count got to zero. Yes zero. Needed HLA matched platelets which they could not get in a timely manner in Alexandria, LA so I was transferred to UT Southwestern Hospital in Dallas. After approximately 50 units of red blood and 45-50 of platelets over an 8 month period I was finally transfusion independent as platelets stayed between 40-60 and hgb at 10-12. Stopped IVIG due to reaction. Had 6 months of what I call my new normal and now all blood counts are dropping again and cidp has flared up. See hematologists on January 20 and am unsure what they will suggest. Oh by the way, kidney function fluctuatates between 15-25 and 45.
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