High Eosinophils

[Perks]

Can anyone explain the dangers of a high eosinophil count?  

[CINDY4]

High eosinophils can mean many things from allergy to cancer. Most commonly allergies and asthma are the cause. They can also reflect a parasite infection. These are the most common.

There are several eosinophilic diseases, and some are very serious. These all of course go along with a high eosinophil count. My daughter has a disease called Churg Strauss which is a systemic eosinophilic diseases that is life threatening, from eosinophils infiltrating her organs and blood vessels, and damaging organs and restricting blood flow. There is also hypereosinophilic syndrome, which is serious, and people have very high eos counts.Also, eosinophilic pneumonia and eosinophilic gastroenteritis, the list goes on and on for each organ system.

Much of it depends on the count. Generally if your blood eosinophil count is below 10%, it is most likely allergy or asthma. If higher than that for a few motnhs you should have it looked into. If the counts are really high like 30-90% you need to get seen soon and get tests done as a count that high usually is not allergy/asthma alone and often reflects a more serious disease.

Cindy

[Perks]

Thanks for your comments.  My eosinophil count is at 16% and I've tested positive for P-ANCA.  Churg Strauss has definitely been mentioned.  Until a couple of months ago, I've had no history of allergies or asthma.  I'm scheduled for a sinus surgery to hopefully learn something more from tissue pathology.  How was your daughter diagnosed?

[CINDY4]

You definitly have a high likelihood of having Churg-Strauss(CSS), with high eos and especially the high ANCA too. A high ANCA is associated with vasculitis, and CSS is known as a ANCA associated disease.
Diagnosis is difficult for many with this disease, because it is so rare. You are lucky in that they are already tuned into this could be what is wrong. Many drs have never heard of CSS.

My daughter's diagnosis came in stages because she was so little when it all started. She is thought to be the youngest case in the world medical literature. It is almost always in adults only. When she was a infant she had life threatning infections(whihc they think triggered it), that led to bad asthma and lung damage. She had horrible severe asthma from infancy on, numerous infections, and sinuses all the time. By the time she was 7 after 15 bouts of pneumonia, failed sinuses surgeries, and not responding like she should to being on daily oral steroids, we saw a new pulmonologist. He knew it was not just severe asthma, and did a chest CT. It showed bad lung disease. A open lung biopsy was then done showing eos all over her lungs. We thought it was just in her lungs at first, then another sinus surgery showed eos everywhere, then as GI problems started after a couple of years they found she had eos all in her gut biopsies, then she had tingling in her legs, and biopsies showed neuropathy. At this point she was 9 and they thought it was CSS but were not definite because of her age, and they found no reports of it in kids. We have gone to major hospitals, and they all thought she had it. We finally took her just last year to the Cleveland CLinic to an adult dr who immediately diagnosed her, saying she had eos everywhere there was nothing else it could be. Eveyone always thought she had it so they had her on steroids since the beginning and tried chemo along the way. She is still on steroids and chemo. It was a long road, but if it is caught early and treated fast most do not progress with organ damage like Lauren has. I would recommend seeing a specialist in vasculitis is you can. These are very serious, hard to treat diseases. The centers for vasculitis are at the Mayo, Johns Hopkins, Cleveland Clinic, and Boston University hospital. Good luck. Also I am on the CSS Association, we have a good website with lots of info at www.cssassociation.org. Take care.

Cindy

[Perks]

Cindy, thank you so much for your words.  My allergy/asthma doctor thinks there is a high liklihood that I have CSS.  In a matter of 5 months, I've gone from completely healthy to someone with chronic sinusitis, GI issues, asthma, p-anca positive, high eosinophils, and terrible joint pain and overall feeling pretty bad.  He was skeptical that we would get a final diagnosis through the sinus surgery as I've been on 40mg/day prednisone for a month already to treat the GI issues.  He's now recommending a ct scan of the chest and echocardiogram.  I don't know what to think.  I'm having a hard time deciphering between symptoms and side effects.  I'm also having difficulty deciding which doctor to call for what.  If this does turn out to be CSS, do you have any information on how this would affect future pregnancies?  I am still young and would like to have more children, but I wonder how it would be possible considering all of the medication required to manage this.  I'm trying to keep my spirits up, but feeling very overwhelmed!  Thanks again for your responses!!

[CINDY4]

I am sorry it took so long to get back with you. We have been on vacation.

About which dr, because CSS can affect so many organs most people have a team of drs. With Lauren her main dr is an allergy/immunology dr. He consults with a rheumatologist who we also see regularly (out of state). Most with CSS are treated by an rheumatologist since it is autoimmune, but a good immunologist also treats immunolocial diseases. We feel we are in good hands. She also has GI, Neuro, Cardiologist, Pulmonary, ENT, Pain, and Endocrinology that she see every few months alternating depending on what is going on.

Your dr is right to worry the prednsione you are on might mask your biospies and not show much. They can do the same to all your tests (CT's, blood, etc. ) In the beginning it is best if you are stable to not start treatment until the tests are completed because the steroids will mask their results giving false negatives. Sometimes if you still have symptoms on steroids and it is right at the beginning, it will still show up. Be prepared if it is all negative, it usually has to be repeated once you are off steroids for a few weeks.

About the drugs and pregnancy. I know several women with CSS that had healthy babies, and stayed on prednisone. Most try to get off, but some can't for that long. The steroids alone are Ok. It is the chemo drugs that are more dangerous, but even some of them can be taken. I know methotrexate and cytoxan can not be taken. Actually I know several women said they felt great during pregnancy. Some do flare after birth, I assume from the hormonal changes, which is common in autoimmune diseases. It is scarey and overwhelming, but finding out is always the worst. Once you know what to expect, you learn to live around it. It may not be the same life you had before, but you learn to live seeing drs regularly, taking meds, and pacing yourself, not to do too much. Many go into remisson for years and can stay on very low dose meds, and gradually get back very close to the life they lived before CSS. Hang in there.

Cindy

[jkar68]

My son has had a high eosinophil count for about a month, first it came back at 24 percent then 2 weeks later 21 percent, he goes back in two days for another check, all other labs in normal range, he is 6 yrs old. At 21 months of age dx with acute lymphoblastic leukemia, received 2 and a half yrs chemo and is now 21 months off treatment cancer free. Any thoughts,
Robin

[Ann3168]

My son is now almost 3 years old and has recenntly been diagnosed with Eosinophilic Esophigitis.  He had been exposed to Toxic black mold from while I was preganant to 1 year of age before it was discovered.  Once discovered they found it in the water, carpet, carpet padding, walls and heating and air vents which were located right above his crib.  Does anyone know of where I might be able to find articles that will link the two of these together?

[Ktgb05]

my eosinophil count is 15.9% but all my wbc and rbc and everything else seems to be okay...I have had ashma since I was a baby. Does anyone know what a high percentage like that could indicate?