I have been on methotrexate, leflunomide and low dose PSA since 2015. I have tolerated this regimen well, and it seems to be working for me. I’ve been feeling tired for the past month, but that happens with PSA, right?
I had a blood test on Monday, preceding my yearly Physical. My GP called at 9:40 pm, as my WBC and neutrophils (sic) had plummeted. She sent me home, telling me I was to go to hospital immediately, should I developed a fever. I will see her at the beginning of next week, for another blood test.
I am not feeling at all well; much like a very intense, Sunday pill day. No appetite, very tired.
Any ideas?
Hi Susan,
That’s interesting to me because I’ve had low WBCs since I’ve been on Enbrel, usually at the bottom of normal but sometimes dipping below normal. My neutrophils have been okay, though.
Take care and avoid sick people–I know that’s easier said than done. We’ve heard of some people having really high fevers and body aches lately, IDK what they were diagnosed with. There’s a lot of hand, foot and mouth disease around lately, too.
What else is interesting is I’ve also been feeling weak and ill lately, with a lot of stomach upset, indigestion and cramps in my lower abdomen. I’ve been wondering what’s wrong with me, and now that you mention WBCs being low, I almost feel like I should have mine checked, too!
The meds we’re on can lower these numbers, but usually not to a dangerous level, from what I’ve been told. The neutrophils are important, though–maybe @tntlamb can share some info about that if he has time!
Oh Susan, I’m so sorry to hear this. Miserable for you, and a worry as well. Of course, I have no idea what might be going on, but I’m glad that your doc is on top of it.
It may have nothing at all to do with PsA: having our lovely disease does not make us immune to other things, unfortunately.
Take care of yourself, and get over to the ER if you start feeling worse or you get a fever.
Let us know how it goes, please.
Seenie
Thanks, Seenie!
I flirt with low normal on red cells, but have been pretty consistent with wbc. This time the line just went straight down! No yet dead though, so there’s hope!
2 Likes
My hemoglobin is always on the high end–at the top.
Maybe you’ll just need a short break from the meds and things will improve. Let’s keep our fingers crossed!
Hi Susan, fingers crossed your blood count will have returned to normal when they recheck it. Stay well over the weekend and away from anyone with any sign of infection. Let us know how things go next week, will be thinking of you over the weekend and hope you start to feel better soon.
Update.
I’ve had an adventure. I ended up in the hospital for the weekend on IV fluids and antibiotics. Seems to be a chicken and egg question as to the cause. They ultimately found an asymptomatic uti, but whether the infection lowered the blood count or whether the low count enabled the infection, isn’t clear.
Nobody seems too, too concerned now that the infection is contained. I’m to stop both methotrexate and leflunomide for two weeks, which concerns me. I worry that will mean a return to PsA symptoms and pain, even briefly.
1 Like
I thought I’d add to an existing thread rather than starting a new one.
I had my three-monthly blood test from Benapali on Friday, and it turns out my neutrophils are down to 1.75, which isn’t horrendously low, but somewhat disconcerting. Oddly, my WBC is actually in the normal range (although I don’t know what it is). My GP went back over my previous bloods during the last few years, and I seem to fluctuate all over the place - 4.8 in Feb 2020, 4.3 in November 2019, and 2.3 in August 2019. It has been as low as 2.09 at one point.
Do other people’s neuts fluctuate that much?
I had quite a flare up of both the arthritis and the psoriasis for about a month, which seemed to just disappear last week (just before the blood test). Oddly, bearing that in mind, my inflammation markets were really very low! Can increased disease activity over the previous month cause the neutrophils to drop, does anyone know? The nurse I spoke to today asked me if I had been well, and I said that I had. No colds, etc this past winter at all. Anyway, another test in two weeks, just to cheer me up.
Any info would be welcome. I’m not particularly concerned if it’s the Benepali, as we will probably go our separate ways within a few months. But my brain always gets worried it’s something else entirely!
Rather strangely, I was doing a search on here just now and came across one of my own posts from 2018, saying that my neutrophils were 1.76 after the first two months with the Benapali. That’s good news for me, as it means I’ve been here in this exact position before. According to my post the following week, I had a blood test done for something else 6 days later and everything was back to normal. So, fingers crossed. There’s also a post on that thread from @Grandma_J, saying hers went up once from 2.2 to 5 in a couple of months, which is also reassuring that they jump about a bit.
Who knew forums could be used for finding our own blood test history!!! I’ll try and chill for the next two weeks!
I know you’ve already answered your own question, but just to add a bit extra reassurance, yep, mine do too. Chill away 
1 Like
That has happened to me twice - once, the lab tech was so concerned with the levels, he called my doc at home at 10:30 at night! Both times the levels rose to regular levels after a bit. No real explanation ever given; just one more PsA party tricks!
Susan
1 Like
Well, second blood test results today. The neuts had gone up from 1.75 to 1.83. Not really a huge rise, but a rise nonetheless and at they’re clearly not plummeting. As the nurse I spoke to said, it’s just a snapshot in time - they could even go up or down during the day. I’m going to blame it, therefore, on having my blood tests at 8.30 in the morning instead of the normal 11.00!! Anyway, she said the white blood cells were normal at 5500, which is well within range, so it’s a bit odd. Another blood test in a month “just to keep an eye on it.” It seems like the folate supplement hasn’t helped much, but I don’t know how much difference it would make in two weeks. I guess we’ll see what happens!
I wanted to come back and say something about this, as it might be helpful to others. I made a joke in my last post that it might be something to do with the time of day, but apparently I’ve now found that can be the case. There are a number of pieces online about how neutrophils and WBC are lower in the early morning and get better by the afternoon. I’ve been having blood tests at 8.30 the last two times - whereas I would normally have them at 11 in the morning or even the mid-afternoon if I go to the hospital for them. The chance of this is apparently increased if you are on certain anti-psychotics or antidepressants that are taken at night. I’m going to ask for my blood test in 2 weeks to be done as late in the morning as possible. I’ll still get up early that day, and it will be interesting to see if it changes anything. Interestingly the last time I had this issue, I had the blood test early in the morning, and then had one 6 days later in the mid-afternoon and all was fine. Probably not a coincidence!!
1 Like