Infusion Day & Understanding Bloodwork

Ocrevus  Winter Infusion

Blood work and Multiple Sclerosis.  How does infusion therapy with disease-modifying therapies impact the health of someone with MS? What supplements may help?

Infusion 4 went pretty well.  I had some itchiness in the throat and tongue but overall it went smoothly.  I am not a candidate for the rapid infusion.  

Last night and today my tongue and throat were both very itchy.  My head feels like there are burning embers in the front of my head. The back of my head feels like it is a vice.  Overall not feeling great.  I got very little sleep last night so my eyes are burning and dry. I have severe cervical spine pain today that started yesterday. 

Pain is high.  Energy is up and down.  I am able to pretend for work.  

So what is up overall with my health. 

My eyesight is getting worse everyday. We did a bunch of blood work yesterday and here is what I found out.

Why might someone with MS have an elevated white blood cell count?

People with MS showed elevated counts of total WBCs, monocytes, basophils, and neutrophils at the time of diagnosis. This makes sense because in a healthy individual a high WBC would imply that your body is fighting off infection or inflammation. I have inflammation in my foot right now (plantar fasciitis) and I walked in pretty stressed out with my health lately. My stomach has been bothering me for months.  So tender that I have gone to my PCP about it. I did a course of antibiotics and the problem was never fully resolved. 

High Mean Corpuscular Volume means that the red blood cells are too large and usually indicates macrocytic anemia. This can be caused by a few factors including low folate or vitamin B12 levels or certain therapies like chemotherapy. Both of these vitamins are required by your body in order to make red blood cells. I have B12 injections and will ramp them up again to see if it will provide any relief. Considering that I smoke and drink there is a definite chance that lifestyle is a huge contributing faction to my elevated mean corpuscular volume.  For symptoms, it would contribute to my fatigue and weakness. It also can lead to numbness and tingling in the extremities, trouble concentrating, and irritability; all things that have been very common since August. There is definitely cause to consider pernicious anemia. 

High mean corpuscular Hemoglobin Value can often be caused by anemia due to a deficiency of B vitamins, particularly B-12 and folate. See a pattern? Elevated MCH can be the reason for my fast heartbeat, fatigue, weakness, and more common headaches.  It can also contribute to my increased tingling or “pins and needles'' in my hands and feet, bloating and stomach upset, irritability and confusion.  I have also had a lot of problems with my sense of taste lately.  (Not from COVID, pump your breaks) Turns out a folate deficiency can cause a smooth or sensitive tongue, aside from the fact that MS can impact the sense of taste. 

This is a bit of a chicken-and-egg situation considering all of this can lead to problems with the nervous system in general terms.  So if I get my folate and B under control will I see improved neurological symptoms?

 

What is neutrophilia?

Let's assume I don’t have leukemia or other primary reason for neutrophilia. Let’s assume it is due to a combination of secondary causes.  I know from my past couple of years fighting MS that I have had lots of infections and inflammation. Most likely the reason my numbers are out of whack is due to acute chronic inflammation that’s caused by a reaction to medication, physical or emotional stress, and/or smoking cigarettes. 

 

What happens when you have low red blood cell counts?

So my red blood cell count is low.  Not super low but enough that it could be contributing to my fatigue, dizziness, and heart palpitations.

 

To Stop Drinking? 

It's about to be the high holiday season and I am not sure if I am interested in going dry.  But it might be the best course of action. With a low Eosinophil count and the fact that I have been on steroids a lot lately and it clearly didn’t help - cutting down on my favorite recreation might be called for. The steroids are probably the cause of my low blood urea nitrogen levels. Considering my creatinine levels are still within normal range.  I may consider adding creatine to my regime once I ramp up training for BikeMS.  

 

Suppressing the Immune System with Ocrevus

It is assumed that my immune system will be all sorts of screwed up because of Ocrevus and Multiple Sclerosis.  It is not surprising that my lymphocytes are low because we want them low so my body stops attacking my myelin sheath.  But it also is why I have been getting sick so often. My stomach is almost always a mess.  Since low lymphocytes can be linked to low Zinc levels that might be something worth adding to my regime. 

 

Okay - I am not an alcoholic…

… but this medication makes me look like one.

Low B6 is not a super common problem outside of the severely ill population.  Some signs of messed up aspartate aminotransferase levels that I am seeing include fatigue, weakness, pain in my abdomen, and frequent itching.  I am also technically obese and probably tempting fate for diabetes with my soda intake. 

 

Vitamin D Deficiency

No surprise my vitamin D levels also came back low. There is a connection between vitamin D levels and increased risk of multiple sclerosis. People that live in areas closer to the equator, with more sun exposure, are less likely geographically to get MS. There has even been a Multiple sclerosis trial that found decreased relapse rate through dietary supplementation with calcium, magnesium and vitamin D

 

Make a Plan

I have attempted to treat my MS with just diet and exercise in the past.  It worked, till it didn’t and now I most likely will never return to my healthy baseline.  But I am thinking that there are some things that need to get corrected in the next couple of months before my next infusion.  If I am going to start feeling better I need to start being better. 

  1. Exercise - physical exercise could r/esult in increased eosinophil count.  It will also help lower my weight which should help me hold onto B6 
  2. Stop Drinking - okay that's not realistic.  I will limit my drinking to 1 night a week and 1 night a weekend. And I will hydrate.
  3. Here is my updated pill popping list & injection list
    1. Pregabalin 50 MG capsule (PNR Normally 1 @ 2X daily) 
    2. Gabapentin 300 MG capsule (PNR Normally 1 @ 3X daily) 
    3. Famotidine Tablets, USP 20mg  (PNR Normally 1 @ 2X daily) 
    4. Milk Thistle 1000 mg (1 @ 1x daily before bed)
    5. D-Mannose 1000mg (1 @ 1x daily a.m.)
    6. Probiotic (1 @ 2x daily a.m/p.m.)
    7. Sennosides 8.6 mg (1 @ 1x daily mid-day)
    8. Health Cranberry + Dietary Supplement (1 @ 1x daily mid-day)
    9. Naproxen Sodium, 220mg (PNR Normally 1 @ 2x daily)
    10. Acetaminophen, 500mg (PNR Normally 1 @ 2x daily)
    11. Ibuprofen, 200mg (PNR Normally 1 @ 2x daily)
    12. Vitamin D (as Cholecalciferol) 250IU ; Calcium (as Calcium Citrate)315 mg
    13. Multivitamin with Calcium (as Calcium Carbonate) 333 mg; Magnesium (as Magnesium Oxide) 133 mg; Zinc (as Zinc Sulfate) 5 m
    14. Olly Ultra Strength Prenatal Softgels seems like a good option  (x1 Per Day)
    15. Optimal Solutions Healthy Mom Prenatal Multi Softgels (x1 Per Day)
    16. Zahler Prenatal +DHA 300 mg Vitamins  (x1 Per Day)
    17. Cyanocobalamin 1,000 mcg/mL injection - 1 injection every 2-4 weeks

 

Overview of my abnormal results

WBC - Elevated but within normal range (White Blood Count)

MCV - Elevated but within normal range (Mean Corpuscular Volume)

MCH - Elevated outside of normal range (Mean corpuscular Hemoglobin)

NEUTS - Elevated outside of normal range (Neutrophils)

Abs Neuts - Elevated outside of normal range (Neutrophils))

LYMPH - Low outside of normal range (Lymphocytes)

RBC - Low but within normal range (Red Blood Count)

Abs EOS - Low but within normal range (Eosinophil Count)

BUN - Low but within normal range (Blood Urea Nitrogen)

CREAT -  Low but within normal range (Creatinine)

AST - Low but within normal range (aspartate aminotransferase )

References 

Akaishi, T., Misu, T., Fujihara, K. et al. White blood cell count profiles in multiple sclerosis during attacks before the initiation of acute and chronic treatments. Sci Rep 11, 22357 (2021). https://doi.org/10.1038/s41598-021-01942-8