Low White Blood Count

[crohnsinct]

Hi Guys,

Sorry I haven't been around much. Busy with non Crohn's issues.

O had her Remi levels checked and she was on the high side so doc had us move out to 7 weeks AND lower dose. At about 6 weeks, stomach pain. I didn't think much about it. A little weight loss...still not freaking. By the 7th week (week of infusion), unrelenting nausea (only vomited once) started. She mentioned all this at infusion and the nurses called doc. Doc decided to keep lowered dose but move back to 6 weeks.

2-3 days after infusion she is back to normal. Performing beautifully in track. Ever since no problems. Nurse tells me all her labs looked good so maybe just a virus was to blame but keeping schedule tightened.

Doc has told us for the past 6 months he wants to scope her in the summer and that he is technically late and it needs to be done.

So today we have our quarterly follow up and doc says WBC was low at last infusion and that we were supposed to have it repeated at home. No one told me that! Then he flips back and forth and is all confused about schedule, dose etc. We retrace all the steps and goings on. He decides next infusion is 7/9 and we can wait for WBC retest for then (good thing she is about to leave for two weeks).

She has gained 1.5 pounds and grown since last appointment but he still stresses eating enough to fuel her activity (2 hours of running and 2 hours of swimming per day). I thought we were all good?! Why the lecture now? You don't have to answer that it is just my frustration.

Then the kicker is he says he wants to wait until December to scope. Said we are changing to much right now and that he wants to know that he is where is he comfortable with her treatment and give us the best outcome for scopes and not to scope when all is in flux. Ummmm I thought we were all good? What is going on?

So low WBC? Makes sense she is on Remicade and MTX so immune suppressed but has anyone had a blip in low WBC that fixed itself without any interference? She hasn't been ill since so the low WBC is not causing any issues.

Maybe WBC was low because Remi was high? Maybe reducing the dosage will fix that?

And before you ask...remember I do not get results so never mind reference range etc. I barely get thumbs up or down. I only get the calls when the doc is concerned. So the fact that he mentioned it and was looking for the retest probably means there was some level of concern there.

 

[Patricia56]

Maybe it was just a blip and did fix itself. Since you don't know how much it was out of range it's hard to say what was going on or how concerned to be about it. Given his decision to wait to recheck until 7/9 I think your assessment that it must not have been that big a deal is sound.

It would drive me crazy not to be able to get test results. That place is living in the dark ages, hopefully only with respect to medical records.

If I followed you correctly, her latest infusion was on a different time schedule and a different dosing than previously. Her next infusion (July) will be back to the previous time schedule but the new dosing. The assumption is that the following infusion (late August) will be at the previous time schedule and the new dosing but until you do that at least once you won't know if it's going to do the job or not. If he has to adjust the dose that won't be until either August or the October infusion. That would put you into October at the earliest and possibly late November or early December for an established time/dose schedule to be in place.

Thus scope in December.

I happen to agree with him about waiting to scope.

And I don't know your daughter's BMI, etc. but if her BMI isn't keeping up with the growth curve he may be concerned about her diet because of that. Do you track her height/weight/BMI at all so you know that she's on the growth curve? She doesn't have to be at the 50% but she should be at least at the 5%.

 

[DanceMom]

A has chronic low WBC. The doctors didn't even bat an eye until it happened several times consecutively. I started asking about it when I noticed the downward trend, from 8 steady falling to 4. Now they are hanging out at 3.7.

I think you need exact results and low results on consecutive tests before getting too concerned. Is there a reason why you can't get a copy of the labs?

 

[crohnsinct]

You followed exactly right Patricia...you are good!

The whole changing dosing/schedule thing is all a little weird to me because she has been doing so well. Growing like a weed, gaining weight, no symptoms. He was trying to reduce the Remi to see if we could help the psoriasis at all (since the theory is the psoriasis and psoriatic arthritis is Remi induced trying to lower Remi). So I was just thinking that the insides shouldn't change much although I guess he is thinking differently. She and I are fine with December, we were just hoping not to have to miss school/track/swim/meets for it.

She is perfectly on curve for her height...has even picked up velocity and grown 2 inches more than they thought she would. Her BMI is 16.1 so at the 5th percentile for BMI so yeah weight isn't keeping up at the same curve. A plateau so to speak. 5' 6" and 101 pounds. I am thin also so it makes sense to me that she might follow. I know they want a little extra on the kids for flares and such but she is so typical of my family.

dancemom: no reason I can't get results. Would just be a pain to call nurse every time and ask her to send a copy etc. Plus, I know me and a little knowledge is a dangerous thing and I don't have the medical knowledge etc to interpret and would drive myself nuts. We are getting some sort of automated system soon or so they have been saying for the last year and a half. I am just mad that he wanted a retest and that info never made it's way to me. Plus, I specifically asked how her labs looked and was told all good so WTH?

If WBC comes back low again, I vote dropping MTX to see if that helps. It sure isn't helping the psoriasis.

Oh and the fun part is he wants to run another remi levels test in August or September...cha ching!

 

[Farmwife]

Not much to add.:hug:

Grace has chronic low WBC but I'm always told by nurses and doctors, "it comes with the territory".

I hope all pans out for your girl and she stays firmly planted in remission.

 

[Jmrogers4]

Jack's WBC has dropped since starting Remi but you know my kid they went from 8 to 6 both in normal range. Hope it was just a blip.
Jack and O will be having infusions on the same day 7/9 The plan is to try and move to 8 weeks at the increased dosage we had last infusion.
Automated systems are nice but.... at least here I wasn't given access to Jack's under my account because he is over 14. He just handed me his password and pin though so I can see them. I only have access to his immunization records and appointment schedule but that is a whole other story about how I feel about that!
Well at least with scopes in December you get them on this year's insurance so you are not starting all over with your deductible but then like me you probably hit it pretty quickly every year anyway.

 

[Clash]

I think C had a bit of a drop shortly after remi started but all in normal range so wasn't even mentioned. I'm not even sure his wasn't just normal flux. Makes sense to me on the scope too since the meds are being adjusted right now. Great to see a post from ya, and I'm glad O is feeling great!

 

[Johnnysmom]

Johnny's last WBC was 3.6, it has always been in the lower range. His GI is concerned, but not concerned enough to lower his dose yet.

We had a scare this November when Johnny got pneumonia and it attacked his bone marrow. His Pediatrician did labs only because he had blood in his urine. We were so lucky she did because his WBC dropped to a 2 and his neutrophil count was 1.01. I happened to get his blood test results on a Friday night and when I saw the WBC I called the GI on call at the hospital and she had me stop his meds immediately. I don't even want to think about what would have happened if he would have continued taking his 6mp with a WBC of 2 and pneumonia. He ended up being off his meds for 3 weeks. I only share this story because it was very fortunate I had access to his lab results. Because he tends to have a low WBC I would not hesitate to hold his meds in the future if he is very ill and I can't get a hold of his GI. It is not normal for a virus to attack bone marrow but his Dr. said it does occasionally happen.

Sorry, I don't mean to sound dramatic but I thought I had things pretty much under control and his last illness really threw me.

It might be a good idea to ask for a copy of her records and labs. Not every week but just enough to have some of her history. You then can know what her usual WBC runs. It is also a good idea to have some of that with you if you go on vacation. If you find yourself in the ER you can hand them her records, it will save a lot of time.

So happy to hear she is feeling better, gaining and growing!!

 

[awmom]

N's WBC count always runs low.....last one was 3.6. Once, it dipped to 3.1 and the GI spread out his remicade treatments to every 10 weeks rather than every 8 weeks. Sometimes I just ask the doc for copies of his labs.......it's easier than going to medical records,etc. it sounds like she is doing well overall. Hope it continues and the dosages/frequency can be worked out soon!

 

[my little penguin]

You can fill out the forms at medical records ask for a PDF ( cd ) of her records from date x to date y.
Easy Peasy and then you can look at the current trends and not worry about the future stuff .
She needs to be able to know her body and how the blood work trends with it so when she is older in adult Gi land things can go smoothly.
I agree with the scope in dec - don't want to scope during any major changes or lots of minor tweaks - only before you make a change or after.

DS had low wbc I think with 6-mp but they have been hovering at the low end since he started remicade .

 

[crohnsinct]

Yeah, think I will go ahead and ask for those records. Hopefully when they go online I can see the results going forward.

I am not to worried about he WBC. From what I read most people on immune suppressing drugs will hover toward the low end and maybe even dip under. If you go to low a tweak in meds is all that is usually needed. So I am really hoping the recent reduction in Remi will have fixed the WBC issues and still keep the CD monster at bay.

 

[Johnnysmom]

I actually read an article that a low WBC is consistent with longer remission Just something to be aware of because it may change treatment. When my son gets an ear infection for example, I get him to the pediatrician quickly and I let them know he runs on the low side. They will usually start an antibiotic instead of waiting it out.

Otherwise, he doesn't seem to get sick more often or have a harder time getting over illness.