Anemia Due To CIDP?

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.

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.

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.

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.

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.

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).

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 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).

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.

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.

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 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:
https://hal.archives-ouvertes.fr/hal-00566332/document
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3487533
An April 2015 study by Dr Richard Lewis is here, but there is a cost to subscribe in order to read the full findings:
http://www.uptodate.com/contents/chronic-inflammatory-demyelinating-polyneuropathy-treatment-and-prognosis

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.

tucmur, has you neuro looked into Plasma Exchange for you? Or SCIg?

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:
http://www.nhlcyberfamily.org/treatments/moab.htm

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.

Some common blood cancer symptoms include: fever, chills. persistent fatigue, weakness, loss of appetite, nausea. I think you should ask her doctor about getting a hematologist involved. I would also look into the pros/cons of a bone marrow biopsy for her. The biopsy would probably confirm or deny some form of cancer.

Looks like my anemia has returned. My RBC was 8.0 last month and they gave me 2 pints of blood. I go for blood tests this week and a PET Scan next Monday to help them confirm the Lymphoma. My Hematologist will probably put me back on Rituximab. I’ll update this thread when I learn more.