Dear friends,
I've had sjogrens for just over a year, and over that time my white blood cell count has headed south from a previously healthy level.
I have now been diagnosed with neutropenia (low neutrophil count). Its not at the dangerous stage yet, but the constant decline has got me a bit worried and if it continues at this rate I'll be critical within the year.
Can anyone tell me if it is normal for sjoggie to have low WBCs? I've been taking Plaquenil for 9 months now, could that be causing it? I don't seem to have any other symptoms except the excessive dryness, occasional fatigue and joint pain.
Also, is there anything I can do to stop it from getting much lower? I try to keep to a healthy diet, will that help? Is it the rate of decline likely to stabilise? Any suggestions or theories appreciated.
regards
Desert Nose
Dear Desert Nose,
I too have had low white blood cell counts and neutropenia and have been told by my hematologist that low white blood cell counts are sometimes seen in Sjogren's. I am not on plaquenil.
Regards
Sabine.
Good morning Desert,
I have battled low blood counts - both red and white for years. I never seem to get the red count in the normal range, no matter how much iron I take. The white count bounces around and it's anyone's guess what the reading will be whenever I have labs drawn. I've had a hematologist/oncologist tell me that low white counts can go along with Sjogrens, but that you want to watch it closely. If you develop any new symptoms such as any painless swelling, night sweats, unexplained fever or weight loss, or a deep, constant itching, these can be signs of other things. I don't know of anything that you can do to get the white count back up. For me, it's very erratic and unpredictable. I can usually tell when it's in the normal range, as I feel a whole lot better.
Take care. Julie
My WBC has always been low, and I do take plaquenil. I don't think the medication is the cause as my counts were low before I started taking it. This is an interesting thread and I'd like to hear others' responses/experiences.
Hi! I too have a low white blood count. From what I have read and after talking to my doctor about it is seen in some Sjogren's patients. I am not on Plaquenil. I have only had the blood tests done once so far so I do not know if my levels change. I was dx with Primary SJS in January.
One of the first symptoms I had was a low white blood cell count (before my diagnosis) Doctors didn't know why and just ignored it because it was not alarmingly low. As my SJS progressed, it was my red blood cell that started to go down and now matter how hard I try, it still is below normal. The white cells finally came back to normal. But I read that when one has an autoimmune thing going on, one of the first things is the white cells start getting low. I am on Plaquenil now, too, but it is only the red that is low.
Liz D.
Hi Desert Nose,
Low white count can be a problem with Sjogren's. I know some other members have had that problem and maybe they can share with you how their doctor handled it. Have you seen a hematologist?
Take care,
quiger
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Hi desert nose,
Sorry to hear you are having these problems. I have had problems with both my red and white cells over the last 2 years,my white cells have been very low though after a investigation by the heamatologst which ruled out the nasties, it was decided to take a wait and see approach. My red cells have been low for the last 10 years, I take iron have had infusions in the past for the iron, but eventually became allergic and now although my iron stores are very low I only get the blood transfusions when my heAmaglobin is below 90.My platelets at times have been involved as well, either very low or very high. My dr now tests my blood less often as we always have some suprise, nothing seems predictable and i have been told its quite typical with auto immune.
Take care
hugs
sallijessi ;D
Dear Friends
Thanks to everyone who replied to my query about white blood cells. Even though I wish you didn't share my problem, it feels supportive to hear about others experiencing similar things. At least I've learnt it doesn't seem to be related to plaquenil.
Warm regards to all of you
Desertnose
New to Sjogrens DX, just starting on methotrexate, prednisone and folic acid. I'm pretty much ditzy about all of the meanings yet, but know the folic acid is to help keep the white blooc cells from dropping while taking methotrexate.
Hi :)
I had a bloodtest about a month ago and was summoned for another yesterday. "Why did i need another?" I asked the nurse. "Oh your nueutrophils (?) are a bit low." She replied. Well - I was going to start a thread in here when - lo and behold! - I spotted this one. Don't know whether my doc will 'relate' it to SjS or not - but if they are low again I'll go armed with the knowledge that it could be SjS.
You're never alone in here - are you? :)
Take care - Scottie :)
Hi Scottie, I know what you mean about the blood being low and the confusion. I have had the low ferritin levels and occasional low Hemg the past several years/ I am now to take one iron tablet every day the rest of my life and be checked several times a year. My neutraphils have been low much of the time the past 8 years or so and my last blood work showed low lymphocytes. In June my T-cells were low which makes me subject to infections but the ratio of all my cells were otherwise good. In otherwords, I am slightly off but not enough to worry about yet. Also they checked to see if I was able to form antibodies from my vaccinations and that part of my blood is working OK. I guess the low T-cells caused me to get that rare infection.
I know that I have done a lot of research on the blood levels in relation to all these autoimmune diseases and it seems that unusual blood tests are very common. Who knows if or when we will cross the line into the danger zone. I think if we get too screwed up they like to start people on drugs for the autoimmune disease to stop the assault on our body. What a confused picture of health we are!!!!
Hope all is going OK with you Scottie. I stop in and check out the boards occasionally but right now I have a little more energy and am trying to get some things done around the house before the other shoe drops. I am getting closer to giving up my nursing license but still have some hope that they will get me diagnosed further and get me under control. :) :) :)
We have to keep a positive attitude no matter what----right!!!! Take care Scottie and the rest of you also. Irish ;D
It's nice to see you back on the boards again Irish! You always have such great advice to give. :)
Take care - Scottie :)
Hi Irish,
It's good to hear you have a little more energy. I hope it lasts and you start feeling much better. Like you said, we have to have hope and try to stay positive. It's so good to hear from you again. We still miss you.
Have a great week ahead.
Hugs,
quiger
Thanks for the additional info. It helps to know if others are experiencing low neutrophils and other blood and chemical variations. I wonder if a healthy person regularly blood tests, whether their bloodwork would show up serious variations over time like ours seem to.
My friend's daughter recently had leukaemia, and he says that neutrophils can get really before they become a problem. He says its the red cells you need to keep an eye on if the whites are going down as that's when you start running into more serious trouble.
warm regards to all
Desertnose
I know it's a while since this subject was discussed but I'd like to bump it up as I've had 2 blood tests this year that show lowered neurophils (white blood count). They're not wildly out of kilter but enough for the Dr's nurse to ring and ask it I'd had an infection etc (which I haven't). I've had blood tests in between the 2 mentioned above, that have been within the normal range. It's reassuring to know that other here also experience it and that it's probably Sjogrens related :)
All the other bloodwork is fine, except it's sero-negative for autoimmune disease ::)
Scottie, how have your neutophil levels been over the last 2 years?
Lesley (New Zealand)
PS this should probably go under the tests/diagnosis board :-\
Quote from: desertnose on September 25, 2006, 04:26:11 AM
Thanks for the additional info. It helps to know if others are experiencing low neutrophils and other blood and chemical variations. I wonder if a healthy person regularly blood tests, whether their bloodwork would show up serious variations over time like ours seem to.
My friend's daughter recently had leukaemia, and he says that neutrophils can get really before they become a problem. He says its the red cells you need to keep an eye on if the whites are going down as that's when you start running into more serious trouble.
warm regards to all
Desertnose
This is exactly what the oncologist said to me when my white blood cell count dropped so low that the rhuemy wanted to rule out lymphoma. After my examination, lymphoma was ruled out, but if my red blood cells become abnormal then she would be very concerned and the rhuemy (who will do the blood tests) should send me back to her. That was her main concern plus she asked a lot of questions about how many infections I'd had recently.
Hi Lesley :)
The only thing that's 'out' on my blood tests at the moment is the thyroid panel. Everything else seems fine and dandy.
Take care - Scottie :)
Scottie, that's good to hear...I guess we soggies have to have something 'out' in our bloodwork. I wonder if being on the plaquinel helps with the lower neutrophils :-\ I have to have a repeat test in 1 month...the levels will probably be back to normal ::)
Cheers Lesley
My white count has been quite low for more than 10 years; after the bone marrow biopsy, I was told "There is nothing wrong with you, ignore it," Every once in a while I get a doc who is freaked out about it, I just tell them, my white count has been low for years with no reason.
When i started on Methotrexate, my doc said my white count could go down even more, and if it went under 2.0, I needed to quit taking the methotrexate. I have blood drawn every month to check my white count.
Collie
Collie, it's reassuring to know that there's nothing sinister going on apart from the autoimmune stuff (if that's not enough) :) Thanks for your reply,
Cheers, Lesley xx
As I mentioned elsewhere I had severe Neutropaenia recently with 0.3 (hospitalised) but mine was put down to
Methotrexate, although lots of RA sufferers take this for years and do not have this problem. I have
been on Plaquenil for about 18 months now as well. I can only assume I plummeted so fast because of something
to do with the Sjogren's. Have now had to stop taking methotrexate.
Uker, I read somewhere that people with Lupus can have this problem (low neurophils) and Sjs is a cousin of Lupus. I've never had low neurophils before this year...the dryness issues began a couple of years ago! It's hard to say what I've got because all the bloodwork is negative for AI 's. Many of my symptoms point to Sjs and some Lupus, so who knows ::)
Thanks for your reply,
Lesley (NZ)
I've recently been hospitalized for the first time; the reason was neutropenia. I was diagnosed wth SJS 6 months ago. Mostly just my eyes are affected (no more tears). But I get these unexplained fevers, 3 or 4 times a year. A couple of weeks ago I got another fever, but along with it there was nausea, vomiting, lack of appetite, diarhea, chills, sweats, etc. After a week, the doctor admitted me to hospital. I was in hospital for 5 days, on IV and also antibiotics since the internist wanted to be on the safe side (didn't know if infection was viral or bacterial). One odd thing I noticed while I was sick those 2 weeks, is that my eyes felt fantastic! Normally, they ALWAYS bother me though. The day before my release from hospital, when I was feeling much better, my eyes started to bother me again - very dry and irritated. It's as though Sjogren's leaves my eyes alone when it's attacking something else in my body; strange. The doctors told me that the hospital was the worst place I could be, having neutropenia, with the sickest people all around me. This has me worried about next time I get a fever, wondering what I should do. I also wonder if there's anything I can do to prevent a reoccurance. I am also thinking about the Swine Flu vaccine; whether it's a good idea for me to have the shot or avoid it? So many questions, I know.