Coordinated Care/ Anemia

Hello there-

As an update, I am doing much better since my diagnosis in February. With IVIG taking, I am back to work fully now and even driving the 1 1/2 back and forth 4 times a week. I'd estimate I am about 80-90% physical endurance what I was (limb strength). Very grateful and I know its a month by month journey.

My main struggle is mental fatigue and exhaustion late afternoon, crashing when I get home (not ideal with a family). I pretty much start feeling the fingers tingling around the 4 week mark; so that is my cycle time for IVIG. Neurologist said energy loss is par for course with CIDP, but what I am feeling seems more like the "borderline anemia" it took months to diagnose in 2014, including the memory fog. So, my MD issued some bloodwork , which came back showing RBC count issues, among other things. She released my labs online with a note that the anemia is back and to reduce my B12 supplementation, which registered above limits. No suggestions, no confirmation of what type of anemia I had. Anemia before CIDP was iron deficiency (blood loss, diet driven), but I got it under control with supplements.

Now, I questioned this time being iron deficiency, because I've made dietary changes, including adding fish back to my vegetarian diet months ago, continuing my supplementation, and have controlled some other issues that caused iron deficiency. Yet, my blood-work is showing it's back. I see the protein and signs of inflammation, which I expected. Using reputable hospital publications:), I triaged the "decision tree" on types on anemia and came to the conclusion that I likely did not have iron deficiency anemia again (iron, b12, stores ok)- MCV pointing also to something else. So, I reached out to a hematologist who reviewed my actual labs to confirm, no this does not point to iron deficiency/nutritional anemia. The answer was it is likely an hemolytic anemia or one associated with chronic disease and there are follow up tests required (reticulocyte, etc.). Only if this returns normal, could there be a bone marrow pathology to explore. I am not jumping to conclusions here, because I feel the likelihood is the autoimmune connection. However, I find that I have to identify these issues myself a bit frustrating (no different than the CIDP diagnosis). Fortunately, the "trust but verify" is natural to me.

Given this possibly could be related to my CIDP condition (and that I thought I saw anemia can be a side effect of IVIG?), shouldn't these types of issues be monitored more closely? Who takes charge, the MD or neurologist of inter-related auto-immune issues (besides patient)?

I really appreciate the resources and support I have!

I also read that ivig can cause hemolytic anemia or interfere w bloodwork (false positive)? I think all the more reason get opinion with local hematologist.

Dear Dac,

I've been getting IVIG infusions for 16 years and, until reading your post, I didn't know that IVIG could cause hemolytic anemia. I looked into it, and you are correct, although it's an uncommon side effect. I've had relatively mild anemia for a long time. One test that was useful in determining that I had an iron deficiency was a test for ferritin.

Regarding coordination of care, I have numerous medical problems (common variable immune deficiency, type 1 diabetes, peripheral neuropathy, autoimmune thyroid disease, autoimmune platelet deficiency, benign enlarged prostate, etc., etc.). As a result, I'm seeing many specialists who rarely communicate with each other and often have different perspectives on what is best for me. Because it's hard to find expert doctors in my immediate area, my doctors are often located in different areas, practice at different hospitals and may not know each other at all. This can be problematic. The only good thing (in my opinion) that sometimes happens is that if one doctor won't prescribe the medicine that I want, perhaps another of my doctors will.

Regarding your issue with IVIG and anemia, perhaps more testing will resolve this matter. However, if there is disagreement between your doctors (e.g., your neurologist thinks IVIG is working well while your hematologist wants you to discontinue it) the decision may be up to you. However, if the anemia is mild I would give less weight to the hematologist's position. If the anemia becomes acute, I would give more weight to the hematologist's position.

I think you touched on a very important topic, although there may be no easy answers.

Thanks for your note. I can imagine how educated you’ve become to ensure your care is managed properly. I vented a bit:) , but it helps to set my expectations if the siloed advice is the norm or just that I need to get someone more involved with my holistic care. It sounds like the former.

On the anemia-

My neurologist responded that while hemolytic anemia can be an IVIG side effect, it is rare (as you mentioned) and also she would expect it to be more severe than my current levels, if caused by IVIG. She also said that IVIG can skue lab results, but it’s generally protein levels. This makes sense to me too. I’m leaning towards this non-iron deficiency anemia (whatever it is) likely not being IVIG related, but perhaps autoimmune and that I need to stay the course with the additional testing for a proper diagnosis.

As for the coordinated care, I smiled when I saw your note about the benefit of multiple drs. in having a few options for care. Ironically, a new obstacle came up today and I would love to have another established dr. to contact.

Last week, my home infusion nurse realized that they never received a nursing order from an “in-state” dr. to administer the IVIG (IVIG order itself was issued by Cleveland Clinic neurologist, out of state). I’ve had 5 infusions. They need my md to sign the order or my upcoming infusion is delayed. I didn’t think this would be an issue for the MD (nor did the home care). The clinic told me a while ago that the md would be an important relationship in managing the local care. After-all, the md wrote the paperwork for my short medical leave, offered for physical therapy, based on my diagnosis and has all the medical records, released to talk to my neurologist. She seemed on board with my diagnosis; so, I didn’t think this was an unreasonable request. However, she is not comfortable (Liability concerns?) and refused to write the order for the nursing. She suggested I go see a neurologist in her hospital’s network. My home infusion place says they see this arrangement enough (out of state neurologist), but they have not seen an MD refuse to sign the corresponding nursing order. I obviously don’t know how to navigate this yetJ

I don't have any experience that would help in solving your new problem. The doctor who prescribes my IVIG practices in NYC, but I live in New Jersey and use a New Jersey nursing company. The problem you describe has never come up, perhaps because the New Jersey rules are different than where you live. Good luck!