Low Neutrophils

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Ellie27
Regular Member


Date Joined Oct 2008
Total Posts : 119
   Posted 7/19/2010 5:40 PM (GMT -7)   
Hey Everyone:) It's been quite a while since I've posted on here, months really...but that's a GOOD thing. I have been feeling pretty great. In Feb I started taking Imuran, which has really changed things for me from how I felt last year.

My question to everyone is what's the lowest number of neutrophils that you've had in your CBC count? Mine have been running in the normal range quite steady for months, but have recently plummeted down to a whopping 1.2 . I've had it as low as 0.8 once and got quickly called in to see my doc. If anyone cares to respond, it's plain mere curiosity on my part. I'm feeling sort of ok..just tired really. No complaints though, as life feels like a piece of cake compared to last winter, and even spring. I try to look on the positives. Take care everyone, and thanks in advance for replying.

-Ellie
It is God that gives me the strength to carry on in the valleys of life and the wings to fly to the mountain tops

Dx: Diagnosed with Epilepsy Jan 2005, SLE July 2007, since then, Raynauds, Alopetia Areta, Vasculitis, discoid lesions, Endemetriosis March 2008. Meds: Tegretol, Imuran, Plaquenil, quite often Flurbiprofen and Rabeprezole, as well as various other supplements/vitamins.


aimsgirl16
Forum Moderator


Date Joined Jun 2008
Total Posts : 1469
   Posted 7/20/2010 4:06 PM (GMT -7)   
Hey Ellie! I am so glad you are feeling pretty good :)! What great news to hear that you are feeling well.

My neutrophils have dropped extremly low before, but I know this was because of Cytoxan. I know my WBC was .08 and I know the neutrophils were extremly low. What are your White blood counts looking like? When mine dropped below 1, I was put on Bactrim (long term till Cytoxan infusions were over). The first time it dropped so low I was in the hospital for a bit until my WBC came up to 2.8, then sent home but can't remember the neutrophils. I know when my WBC went to 2.8, my neutrophils were 11 so I can imagine they were almost non existant at .8!

Has your doctor said anything about Imuran causing the neutropenia? I am sure you are aware but with yours being so low you need to be EXTREMLY cautious around germs (try to avoid them) and constantly be practicing better than normal good hygeine. If you have to be around someone with a cold or going in heavy crowded areas, I would recommend wearing a mask. I know its uncomfortable with all the looks you will get but I think that is worth it rather than landing in the hospital with a horrible cold or worse...


Please let me know if you have any questions!!! Hope everything starts going up!!! is your RBC looking ok?

Ellie27
Regular Member


Date Joined Oct 2008
Total Posts : 119
   Posted 7/20/2010 5:11 PM (GMT -7)   
Hi Amy. Thanks for your response. It's just nice sometimes to hear what other people experience, even if it's something on paper that's so impersonal as #'s of counts. I always like to hear when others have been somewhere similar, ya know? I can't imagine having such a low WBC as 0.8 Wow! and as for having high Neutropils, that seems foreign to me..maybe when I wasn't sick with Lupus (but then I was oblivious back then...so who knows). The thing about my neutropenia is that it's been one of those things that's just loved to hang around, and doesn't go away very often.

Right now my WBC is low too at 2.8, and my RBC is only slightly low at 3.62...nothing to worry too much about. The lowest WBC I've ever had way 2.3 So I still am wowed at 0.8 but I guess that's nothing to WANT to get is it now? So you REALLY think that I need to be wearing a mask? Is that what you do Amy? You're right, I would feel silly...up till now I just act fairly normally when I'm around sick people. I don't flock to them, but I have family staying with me with little kids (2 and a new born) who get sick/colds etc, fairly often...guess it doesn't help me. So far I haven't had an illness/fluish bug stick..just cold symptoms from time to time.

My doctor hasn't commented on the low neutrophils yet. I figure that he'd call me in if he was worried about it. I figure that my RBC is acting up because I just had a D&C for endometriosis fibroids, etc last month, and there's been a lot of bleeding...or at least that's what I'm hoping to chalk it up to. Thanks so much again for your response. I'm still curious to hear of others experiences. Have a great day Amy!
-Ellie
It is God that gives me the strength to carry on in the valleys of life and the wings to fly to the mountain tops

Dx: Diagnosed with Epilepsy Jan 2005, SLE July 2007, since then, Raynauds, Alopetia Areta, Vasculitis, discoid lesions, Endemetriosis March 2008. Meds: Tegretol, Imuran, Plaquenil, quite often Flurbiprofen and Rabeprezole, as well as various other supplements/vitamins.


Bsime
Veteran Member


Date Joined Apr 2006
Total Posts : 1299
   Posted 7/21/2010 7:44 PM (GMT -7)   
Ellie,
 
Imuran is notorious for lowering white blood cells in some patients.  It did it to me but not for 18 months on 150mg daily.  Discuss this with your doctor.  My doc lowered the dose and everything eventually stabilized.  In my case it hit wbc, rbc and platelets.  Imuran is technically a cytotoxin and can be toxic to blood components.
 
 
 
Bill
MCTD (lupus, scleroderma, polymyositis).  Diagnosed 2005.  Kidney, liver, GI tract, dysphagia, raynauds, Barretts esophagus, quadriplegic in 2005.  Recovered and now active in skiing, tai, chi, hiking, golf.  Meds: prednisone 2.5mg, imuran 25mg, amlodipine, benazapril, omeprazole, potassium, folic acid, vitamins, maxide and various supplements and vitamins.
 
Remain optimistic and you can overcome the odds.


Ellie27
Regular Member


Date Joined Oct 2008
Total Posts : 119
   Posted 7/21/2010 8:15 PM (GMT -7)   
Thank-you for your reply Bill. I have only been taking Imuran for 6 months now, and I hope that my WBC doesn't get lower. "Hopefully" it's just temporary for me. I guess I'll know next month when I get my monthly levels taken. I am taking 125mg p/day right now. This is only the second time for me ever that my RBC has been lowered, and so I am not too worried about that..I figure that that has to do with the recent surgery I had a month ago, and the excessive bleeding that resulted. But as for the Neutrophils, I hope that it goes up, not down, that's for sure. Thanks for the link too...I checked it out and read it over. I had thought that the med targeted the RBC and not the WBC, what an interesting surprise for me...hmmmm lots to think on. It makes me glad that I am getting regular work and that it's available to help monitor.

I'd like to ask you a totally unrelated question Bill, if you don't mind? I noticed in your description of your conditions, etc, that you're recovered and very active. I think that's GREAT! My question for you comes with wondering about you going hiking. First of all, are you extremely sun-sensitive? And if the answer's yes, how do you manage to balance the hiking and being in the sun and keep from feeling ill effects? I LOVE hiking, but haven't quite found my way back to it yet since I've become sun-sensitive. I'm afraid of how the heat and UV rays will effect me once I reach the level out of the trees. Got any good advice, I'd love it. Thanks so much.

-Ellie
It is God that gives me the strength to carry on in the valleys of life and the wings to fly to the mountain tops

Dx: Diagnosed with Epilepsy Jan 2005, SLE July 2007, since then, Raynauds, Alopetia Areta, Vasculitis, discoid lesions, Endemetriosis March 2008. Meds: Tegretol, Imuran, Plaquenil, quite often Flurbiprofen and Rabeprezole, as well as various other supplements/vitamins.


Bsime
Veteran Member


Date Joined Apr 2006
Total Posts : 1299
   Posted 7/22/2010 5:53 AM (GMT -7)   
Ellie,
 
I am not sun sensitive (I think the stats are about 40% of lupers) so using sun block (neutrogena) works fine for me.  Played golf on Tuesday and was out in the sun for 6 hours without a problem.
 
My case was extreme and complicated.  Lupus hit me hard but polymyositis crippled me.....I was a quad and could not swallow.  As far as I have determined no one has ever recovered from such an extreme loss of muscle (40 lbs in a week). Even so, I have probably lost 35-40% of my muscle cells so what has come back is the remaining 60-65%. 
 
Some people who are sun sensitive do manage with sun protective clothing and sun block but others react to almost any sun exposure.  I was lucky that was not one of my problems since I hike, play golf, and ski.
 
Bill
MCTD (lupus, scleroderma, polymyositis).  Diagnosed 2005.  Kidney, liver, GI tract, dysphagia, raynauds, Barretts esophagus, quadriplegic in 2005.  Recovered and now active in skiing, tai, chi, hiking, golf.  Meds: prednisone 2.5mg, imuran 25mg, amlodipine, benazapril, omeprazole, potassium, folic acid, vitamins, maxide and various supplements and vitamins.
 
Remain optimistic and you can overcome the odds.

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