I have recently developed intermittent leukopenia (I've had consistent lymphonenia for years). I've been quite unwell over the past few months - anaemia due to increasingly heavy periods - and so have had quite a number of full blood counts done, which is how I am aware of this. I don't know whether the leukopenia is an indication of increasing SLE activity? Grateful for any advice/thoughts. I am due to see the rheumy in 4 weeks time, as a note.
Also, any thoughts as to whether I should have the annual flu jab given the above? Or any experiences of having the jab? I've never had it before but my new GP is pushing for me to have it done.
Many thanks.
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MrsMouseSJ
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My bloods are chronically low, just like yours. My (often severe) anemia is thought to be due to Lupus activity as is my Leucopenia. My WBC typically sits at around 2.5 and my HB at 9 if I take the iron pills. My leucopenia doesn't seem to increase my incidence of infections (quite the reverse) although it does make my doctors reach for antibiotics quite readily. I'm told that my bloods will improve and stabilise when my flares come under control but I can't see that happening anytime soon . . My bloods are considered 'normal for me'.
Re. the flu jab - I absolutely hate them. I always have a mega flare afterwards but this must surely be better than risking pneumonia etc? I haven't had mine yet but it is one of the conditions of my prescription for mycophenolate so I will reluctantly be booking myself in soon . . .
I hope some of what I have said helps. It sounds as though you are being closely monitored. 'Live' vaccines are to be avoided in the immuno-suppressed. It your surgery will know this.
Many thanks for your reply Clare. You poor thing; I feel awful if my Hb drops below 10 and so having to live with one of 9 , even on iron pills must be tough. I've been lucky in that I can't tolerate the pills so I've been given iron infusions instead - much kinder on the stomach and gut - and, recently, when my Hb went below 8, a transfusion. Which helped a lot. And, of course, my Hb isn't always low; it drops post period. So you have my every sympathy.
Interesting what you say re the flu jab and you. A flare is what worries me and I certainly wouldn't go near a live vaccine. I wonder why it happens with you?
I'm so used to being anemic that I barely notice although I am less tolerant as I get older and everything becomes much harder. I've had many transfusions over the years and they are fantastic but I resist them as much as possible. I reacted really very badly to the infusions that I had so Ferrous Fumarate is the only way forward for me but it's slow and my ferritin levels never get high enough to prevent the next decline in my HB. It's been 25 years . . . ! Take care x
You might find my reply to Pickle's flu jab post helpful to you. You could ask your Rheumy's advice in 4 weeks time and still be able to get a flu jab which is important!. Difficult decisions we have to make!. Good luck and let us know how your appointment goes. X
Hi mrsmouse: great discussion. I've got immunodeficiency (early onset pre immunosuppression hypogammaglobulinaemia & lymphopenia) and am v cautious re immunisations. Also have some sort of borderline anemia which hasn't been fully/properly thoroughly investigated yet...I think the most consistently low is aspect is heamatocrit. I have reacted extremely badly to the flu jab: 4 years ago, just after starting on hydroxy, the jab gave bad flu symptoms + coincided with a mega flare of chronic osteomyelitis in my upper jaw + sinusitis & nasal passage infection in that side of my face...meant 5 months on high dose flucloxacillin & a lot of appts with oral surgeon, maxillofacial consultant & ENT
So, I've avoided flu jabs until this Autumn...BUT: had one 2 weeks ago & seem OK! The reason I let them give me the flu jab again is that I'm now under immunology, being closely watched there & by rheumatology...so I was feeling a bit safer. Am seeing immunology again on Monday & will ask about all this. My understanding is that because I'm on daily hydroxy + myco + pred tapers (I was on 10mg when I had the jab) my immune system is suppressed enough to mean I'm not reacting as strongly as I was back 4 years ago when hydroxy was all I was taking. Hmmm. My urinalysis tests are always v high in leukocytes during my characteristic complex persistent UTIs .+ pyelonephritis...am not clear at all on the diff between leukopenia & lymphopenia (I know the diff is v basic...but, despite having researched my stuff thoroughly, I just can't quite get my head around this distinction: eg wiki says: White cells are best classified into two major lineages: the myeloid leukocytes and the lymphocytes. The white cells of the myeloid lineage include neutrophils, monocytes, eosinophils and basophils. Lymphocytes include T cells, B cells and natural killer cells. )
Also, as I understand it, my immunodeficiencies correspond to certain types of relatively exhausted T & B cells, due to my infant onset lupus going mostly without immunosuppression for 50 something years. Now my treatment plans are addressing both my immunodeficiency & my autoimmunity, I seem to be doing better...but am considered a 'complex patient' with low threshold for IV antibiotics, and My medics have me keeping an emergency kit of high dose long course antibiotics at home
I'll be following this thread with interest
Wishing you all the v best...hope you'll let us know how you get on
Hi Barnclown. Good to hear from you! I've been meaning to drop you a line but things have been rather fraught at this end. Just couldn't physically deal with my various 'conditions' plus the anaemia. However normal, by my standards!, service is slowly being resumed; working through the backlog on my 'to do' list. Glad that the last flu jab passed uneventfully for you. That gives me confidence, given that our conditions at least partially overlap.
No prob...we're all in the same 🚣: my 'to do' list just gets longer & longer. For me, one of the greatest things about forum discussion is the spontaneous personal contact❗️
I do not have flu jabs after reading that they can cause an abnormal immune reaction in susceptible people and with my immune system problem, I suspect I am one of those people.
I now believe from my experiences that, for my body, the less intervention the better after so many years of tests and treatment one way and another to no avail, other than making my condition worse.
I also read that last year the virus mutated rapidly and the flu jab wasn't nearly as effective as it should have been from the statistics, so this is another consideration when we take the risk of flu jabs.
What worries me, too, is you say you have had so many full blood counts done - these won't help your anaemia when you have heavy periods.
I was very anaemic at one point and have been so at times through my life for what reason I don't know, but suspect my diet and lifestyle didn't help.
Are you able to eat foods that help with anaemia - you may need to talk with a nutritionist about this, as most doctors, from my experience, know little on the subject of healthy foods.
I took this route and I was not anaemic at my last blood test. All the best.
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