Enbrel and low white blood cell count

General
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I know it’s never good news when I get a call from my GP’s surgery a few days after my last blood test…

I am just about to have my 4th Enbrel injection and to be honest it’s made me forget I have PsA. All the stiffness has gone, I’ve stopped taking Meloxicam, and I think there’s starting to be some reduction in swelling too.

All going very well indeed, until today. Apparently my white blood cell count is low. I don’t know the figure, but it’s low enough to be called in for another test next week. Perhaps on the good side, it’s not low enough to be called in immediately. It’s been emphasised I must call my GP immediately if I have any signs of infection.

I hope I am worrying unnecessarily. Has anyone else had this, and what was the outcome? I would be gutted if I have to come off the Enbrel, but equally I don’t want to be a target for every infection going!!!

I might increase my folio acid dosage as I only take one a week and I am still on 15mg MTX - not sure if that will help ?!

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Hello HelenJ, you need to hook up with GrandmaJ on here, she's going through exactly the same thing at the moment.

It's great that your doc is 'on the ball' with your bloods, but I also know that sinking feeling when that call comes through. Last time it happened was over my liver enzymes which by the next test were all back to normal again. So hang in there this could be something of nothing but better to be on top of it early. Your doc gets my vote :-)

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Oh sorry, should have searched for an existing discussion first… Our posts are almost carbon copies of each other! I’m waiting for a response from my biologics nurse to see what she advises.

My surgery is indeed very quick to pick up significant changes in my blood tests, I’ve been hauled in there before when Leflunomide sent my ALT and ALP sky high. Interestingly though, my monthly blood tests have continued due to MTX. If I hadn’t been taking that, would I have been screened routinely because of the Enbrel?

I’ve never taken multivitamins and don’t know where to start, but I will try being a bit more thoughtful about my diet as well :slight_smile:

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Heck no, HelenJ, it’s unlikely that you would have found GrandmaJ’s post on a search. I’m sorry that you’re up against this as well.
Sounds like your surgery is really on top of things! I always figure if they phone, I’m not going to worry. If the ambulance pulls into the drive, maybe I’ll worry then. LOL

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Hi HelenJ, I didn't mean for you to have to search for the discussion just thought you might like to look up GrandmaJ's profile and send her a message or a friend request.

To answer your question on monitoring, I'm only on Simponi (golimumab) and they still do my bloods monthly.

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Hi Jules don’t worry I didn’t take it like that, I just thought it would be useful for others to have the same topic under one thread. I’ve just searched and found a few other similar posts too!

And yes, I’ll be in touch with GrandmaJ, thanks!

Interesting to know about the monitoring, thanks also for that information

Helen

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Hey HelenJ, here I am!!!! I just saw this discussion now--I had a very busy/weird day and just hopped on here at about 10 p.m.

I do have the lower (below normal) white cell count, my rheumy discovered several weeks ago. He told me he wants to recheck it in September and if it drops any further he'll need to take me off Enbrel!

I started Enbrel July 3rd of 2014, and like you, I had really quick results. It's been like a miracle. It felt so good to finally feel normal, but always in the back of my head I worried that this was too good to last--something was sure to rain on my parade--and now my WBCs are doing just that! :-( I'm thinking that the fact that Enbrel is making us feel so good has something to do with our funky immune system. It would be interesting to me to see if there is any evidence with people who don't get such good results from Enbrel if maybe Enbrel isn't able to compromise their immune system.

Anyway, my immune system really let me down this past weekend and now I'm on penicillin for 10 days because I tested positive for strep on Monday. Nobody I know of in my close circle of people has had strep, so I think I might have picked it up walking through the ER last Friday because my mom was there for her heart problems. But, I only walked through to get to her room--I didn't get close to anybody in the waiting room or anywhere! Normally, I could be around sick kids and grandkids and not catch anything! I can count on one hand the times I've been sick in my adult life with "bugs" I caught!!!

So, after being so sick for a few days with something contagious I had to avoid my two newborn grandbabies and other people--my mom had a pacemaker put in Monday and I couldn't visit her until yesterday, I couldn't deal with that too often. (I mean having a contagious bug.)

One positive thing is the doctor checked my WBCs when he did the strep culture and they were up into the normal range, and he said that was a good sign. I'm hoping they'll stay up there for my recheck in September!

Moral of the story--beware of sick people-or just people in general haha--they have GERMS!!! That lower WBC count really isn't a good thing. Be sure to see your doctor asap if you feel sick. My fever only went as high as 100.3, but I'm pretty sure the strep was attacking my whole body--and it's taking longer than it should for the sore throat and swollen glands to go down. Nothing to mess around with, I guess!

Good luck!

p.s. MTX and Enbrel combined are probably doubly hard on your immune system. Also, my primary doc and rheumy both told me to stay off Enbrel for the duration of taking penicillin. :-(
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GrandmaJ, sorry to hear you had a rough time recently. I hope the antibiotics do the trick. Keep us posted how you get on in September. Do you find if you are off Enbrel for a short time that your PsA symptoms return? Certainly the first week I thought it only lasted for 4 or 5 days but the last 2 weeks have been better, I’ve not felt any ‘dip’ at all at the end of the week.

I spoke to my rheumy nurse yesterday, she was less concerned about the WBC than the fact that my ALT has risen again (over 100), if it’s not down by my retest next week I am off MTX for a while. She thinks I had some sort of a bug, as I did feel nauseous all week. I had put that down to being given a new brand of MTX… Who knows.

Nurse also said there is nothing I can do/take that will help raise my WBC. Just avoid infections!

So this week I am feeling fine, still getting the hot and cold flushes and now have the beginnings of an acne breakout, but I can move around the best I’ve been able to for several years. If I sit down for an hour, I can get up easily again. I almost need to ‘unlearn’ some of the odd habits I have developed over the years to compensate for my stiff and sore joints. At the moment I like this drug a lot, but I’d be lying if I said I wasn’t a little apprehensive about how my body is reacting to it.

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Hi HelenJ.

First, I wanted to ask if the MTX was doing anything for you. It sounds like you've got the most symptom relief from Enbrel, but maybe I missed something.

It's been 13 days since my last Enbrel injection. Honestly, I don't think I'm having symptoms of PsA or psoriasis any worse (I always have about 20% of the symptoms I had before starting Enbrel). But Saturday night I did have some pain in my knees that I haven't had for a long time.....I'm hoping having the strep and taking penicillin is fending off any flares, though!

The doctor checked my WBCs when I went in for my strep. I had told him my rheumy was concerned about them. Interestingly, my WBCs were in the normal range--he said because of the strep, but they would go down again and I should still have them rechecked in September. This is so scary because, in the winter especially, it seems like at least one grandkid is sick at any given time, and I'm with them a lot. I was concerned Friday at work because my supervisor has a cold. I asked her to keep her distance, but she kept insisting she only had allergies. I hear of so many people on this site who said they caught what they thought was a cold and it ended up being pneumonia and they had to be in the hospital! That's so scary and something I wouldn't want!!!!!

I wouldn't worry about SEs from Enbrel, but I'm pretty sure people have experienced nausea from MTX. I get hot flashes, but I've been getting them since peri-menopause. I always chalked them up to that.

My stiffness left almost immediately when I started Enbrel. I was like you, slow to rise and start moving--I was like a 90-year old getting out of bed, a chair, etc. Everything was stiff, especially my lower back. Well, about 7 weeks after starting Enbrel, my new wonderful, limber back went out--and worse than ever! Someone mentioned maybe it went out because it wasn't used to all the new movement. That made sense to me. I had had back pain problems for a few years, but this was so extreme I was actually pretty much bedridden for several days on tons of ibuprofen and constant heating pad. After 3 weeks, and by that time the pain was a lot more bearable, an MRI showed a disc protrusion impinging my spinal cord, and several bulging discs. On top of that, my left SI joint has signs of AS...they were interested that my left SI wasn't giving me trouble at the time--the pain was in my right butt and leg. Well, in December my left SI did start hurting and that was horrible, too! THEN, around March 1st, my feet started killing me!!!!

So, beware of your new "loose" joints and, even though you feel really good, don't overdo it! Maybe you won't have these things happen to you, but better to be safe than sorry. I, in no way, feel as good as I did those first 7 weeks on Enbrel, but the pain is not PsA pain-it's all due to damage from PsA. All those years of having a stiff back and neuropathy in my feet did some damage that's irreparable. Ugh, but still better off with Enbrel--except now for the low WBCs and worrying about germs! Ugh!

I'm glad Enbrel is working for you--it's a miracle, isn't it? I wish it worked that well for everyone!

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I had 2 rheumys that were prepared to let things take their natural course, one prescribed nothing, the other just Meloxicam. When the time came for MTX it was me who hesitated, and only a serious lecture by my nurse convinced me. I also delayed taking Leflunomide, although that was because my life was a bit difficult at the time and I didn’t think I could cope with it. By then I was totally converted to the idea that I needed to take PsA seriously and that continued medication was the way forward - finding this site helped me a lot. I read about biologics and how they had given some people incredible relief and was desperate to get on one. My logic was that my quality of life was far more important to me as a younger person than 15-20 years down the road, plus if the other drugs weren’t working so well, I’d have permanent damage anyway.

I think I have escaped damage to my larger joints, although I’ve not had any x-rays to prove it. Not sure about my thumb and feet though.

I’m not sure that the MTX does much for me - I stopped it for a few months about a year ago when it was the only drug I was taking (apart from Meloxicam) and noticed a slight difference, but very small. I am supposed to be doing a 12 week trial on all the drugs I was taking before, plus the Enbrel so they can monitor if the Enbrel is working. That’s all part of the process here to determine eligibility for biologics.

I’d be happy to come off the MTX, but I thought I read somewhere that it can help stop the body producing antibodies against the biologics? Might have got that wrong! It would be lovely to not take ANY more tablets!!!

I’m sure there are plenty others on here who take Enbrel and don’t go down with every infection going. I suppose every individual is different both in terms of how their immune system copes and their lifestyle and how it might bring them into contact with potential infections. It must be very difficult if you are in close contact with children. I’m just going to try to stay as healthy as possible :slight_smile:

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Yes, Helen, you're right--there are a lot of people, even those in contact with kids (school teachers, moms, etc.) and they say they don't catch anything! But I think that's because Enbrel isn't compromising their immune system the same as it is ours. I went through all of last winter without catching anything but a couple of colds that lasted longer than usual, but nothing serious. But, that was before my WBCs were below normal......now I'm either going to need to be really careful, or my rheumy will make me go off Enbrel.

There are different opinions about MTX. My dermatologist had told me last year that new studies were showing there wasn't any evidence that it is needed in combination with a biologic to help stop the body from producing antibodies against the biologic. As long as this is on my mind, I'm going to ask my rheumy his opinion--just to see what he knows about that.

Hopefully, you don't have any permanent damage--it's not fun. I didn't know the details of your thumb, but I can tell you the joint at the base of both my thumbs--next to my wrist--had been extremely painful for a long time--probably almost two years. Sometimes the sudden stabbing pain would nearly bring tears to my eyes! Any small movement of that joint would nearly send me through the ceiling. My left thumb joint where all that pain was is enlarged. But, I'm having hardly any pain at all in them anymore! So, even though you can see there is damage, IDK if the Enbrel stopped the pain or what! It's just gone! So, IDK what's going on in your thumb, but maybe it's like mine and will settle down and be "normal" again!

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Today I had my labs and hopefully will get good news about my white cell count. I can hardly wait for the results--I have an online "my chart" account, so hopefully I'll be able to log on and see the results tomorrow. I'm so impatient about this--it seemed like forever waiting for the lab appointment, and now it seems forever before I'll get the results! I just want to know what's going on! I've read everything I can get my eyes on online about reasons for low WBCs. It's rare for Enbrel to make them low, and there are things like lupus and cancer that could make them low, too. I looked back in my online chart results and my WBCs were near the bottom of the normal range even before I started Enbrel. Huh????

Helen, if you're there, how did your WBC lab turn out? Did they go back to normal?

I felt extremely tired this morning--the crushing fatigue I haven't felt since prior to starting Enbrel. After work I got shaky hungry and had to stop for some McDonalds cuz I was so hungry, but afterwards I got that weak, shaky feeling-it's hard to describe, but I just felt like a wet noodle. Ruined our evening plans of going bicycling! :-(

Anywho, crossing my fingers about the WBCs--I feel like I'm in limbo not knowing what's ahead if I have to go off Enbrel.

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I am crossing fingers for you too! I know you have been working hard trying to get the numbers right and make any reasonable change possible to get you wbc up. Good luck!

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Thanks, Rachael! I got the good news today that my white blood cells are normal....4.2 in a range of 3.7 - 12.? . So, I get to stay on Enbrel! That is about what they were before I started Enbrel, so I most likely just have WBC's at the low end of normal! I can only hope!

Now I have to go spend some money at Kohl's--I have a 30% off coupon and realized it expires today!

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Lol, I hate to pay full price too! I am so happy for you what great news!!!

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Great news, GrandmaJ!

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:-) Thanks Rachael and Seenie!

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Great news GrandmaJ! I have good news too. All bloods normal - WBC 4.something and ALT OK. Saw rheumy today and I am to restart MTX at a lower dose (10mg) and I have asked to switch to injectable rather than the pesky tablets. No more Leflunomide. So I get to stay on Enbrel too!



The swelling is starting to recede on some of my joints - I now have bony elbows - hmmmm. Can’t remember having them before!!



My only (and really it is the ONLY) issue is that I have enthesitis on my right heel which is so painful as I can’t find any footwear that doesn’t rub. So I still can’t walk as far as I’d like even though my knees and feet are much improved.



I do still have PsA, but for the moment the days of going upstairs on hands and knees and almost not being able to clean my teeth are behind me - yay!

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Hi Helen, if your heel pain is at the back of the heel then try clogs/mules. I live in my FitFlop GoghPro's.

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Great news Helen, and yes ask for MTX injections, I’ve found that so much better than the tablets