Author Topic: Flaring! My lymphocytes are under 400! 1/4 what they should be  (Read 389 times)

angelina

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Flaring! My lymphocytes are under 400! 1/4 what they should be
« on: October 10, 2018, 10:44:05 AM »
I am flaring and my lymphocytes are now under 400!
Also am on 40mg prednisone a day and plaquenil 200mg

Recently tested positive to the ANCA vasculitis test with a positive myeloperioxidase.
Dr is hesitant to diagnose me with wegeners as I am not showing organ damage.
Anyone else with low lymphocytes and sjogrens?
34 yrs old- sjogrens, lupus, graves disease, peripheral neuropathy, anxiety, PPD- on plaque nil 400mg, prednisone 10mg, celexa 40mg, dairy/gluten free

Carolina

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Re: Flaring! My lymphocytes are under 400! 1/4 what they should be
« Reply #1 on: October 11, 2018, 05:43:32 AM »
Hi angelina,

From Merck Manual:

https://www.merckmanuals.com/home/blood-disorders/white-blood-cell-disorders/lymphocytopenia

Lymphocytopenia is an abnormally low number of lymphocytes (a type of white blood cell) in the blood.

Many disorders can decrease the number of lymphocytes in the blood, but viral infections (including AIDS) and undernutrition are the most common.

People may have no symptoms, or they may have fever and other symptoms of an infection.

A blood sample is used to make the diagnosis of lymphocytopenia, but a sample of bone marrow or lymph node may be needed to determine the cause.

Doctors treat the cause of lymphocytopenia.

Some people are given gamma globulin, and some benefit from stem cell transplantation.

Lymphocytes are a type of white blood cell that plays several roles in the immune system, including protection against bacteria, viruses, fungi, and parasites. Lymphocytes usually constitute 20 to 40% of all white blood cells in the bloodstream. The lymphocyte count is normally above 1,500 cells per microliter of blood in adults and above 3,000 cells per microliter of blood in children. A reduction in the number of lymphocytes may not cause a noticeable decrease in the total number of white blood cells.

Hope you find answers.

Regards, Elaine
Female-76-CVID-pSJS-IC-PN-CAD-Osteoarthritis-COPD-SFN-IBS-Knee/Shoulder Degeneration-SIBO, Intertrigo,Act.Purpura-Anemia-Copper Def-Raynaud's-Meniere's-Hiatal Hernia-Achalasia-IVIG Gamunex-Medrol-Gabapentin-Atenolol-Pilocarpine-LDN-Nasonex-Lipitor-Estrogel-B-12-Iron-D-Mannose-NAC-Co-Q10-D3-FishOil

irish

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Re: Flaring! My lymphocytes are under 400! 1/4 what they should be
« Reply #2 on: October 14, 2018, 09:18:45 AM »
The way I understand it the Wegeners causes the vaascuitis in the larger vessels such as those to kidneys, etc. Have they tested you for any other vasculitis disease? It can be hard to sort out when a person isn't hit really hard. Hoping they can sort things out and get your issues under control. Good luck. Irish

trejonina

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Re: Flaring! My lymphocytes are under 400! 1/4 what they should be
« Reply #3 on: October 14, 2018, 04:43:07 PM »
Hello Irish, you are a strong warrior.May you heal and feel better. My prayers are with you. Thank you for all your thoughtful and informative posts.

Tiff123

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Re: Flaring! My lymphocytes are under 400! 1/4 what they should be
« Reply #4 on: October 15, 2018, 12:58:48 AM »
I am flaring and my lymphocytes are now under 400!
Also am on 40mg prednisone a day and plaquenil 200mg

Recently tested positive to the ANCA vasculitis test with a positive myeloperioxidase.
Dr is hesitant to diagnose me with wegeners as I am not showing organ damage.
Anyone else with low lymphocytes and sjogrens?

Yep my lymphocytes are often under normal or borderline for the last year. My doctor said he is not too concerned though and it can depend on the lab. And he is right, at one lab I tested normal and in another it's always a lot lower. Weird.

My general white blood cell count is always fine though.

I have had a few colds since August, that can muck up those numbers too.

I was recently diagnosed via blood tests with anemia (had it in the past and it's back) and am back on iron supplements. Off and on heavy periods once in a while can be my cause. I was also tested for vitamin D and was very low there.

I am hoping raising these numbers can even me out some the rest of the year, the immune system needs a proper balance to function normally and my immune system has been haywire in recent months.

While a million tests showed I have a ton antibodies for sjogrens, my main symptoms in the last few years have been leukocytoclastic vasculitis style rashes, mostly on the lower body off and on. Ugly stuff at times. I recently had allergy blood testing done and have yet to get the results though. I have baffled many doctors since they never have been able to give a real reason why these rashes happen to me. I occasionally go on a short treatment of prednisone for a week now and then which is a wonder drug for me once in a while when they let me take it! I often never have enough symptoms outside of some purpura leg rashes at times so they are hesitant to give me meds very often like steroids. But when I take prednisone everything bad vanishes lol and sometimes it lasts a bit when the course is done.

Best of luck to you and I hope you can get more answers. The immune system is sooooo complicated at times.
« Last Edit: October 15, 2018, 01:06:24 AM by Tiff123 »

irish

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Re: Flaring! My lymphocytes are under 400! 1/4 what they should be
« Reply #5 on: October 16, 2018, 07:24:32 PM »
I am going to suggest that you seek another opinion. It is unsettling to hear that you have vasculitis that is mostly untreated. There can be damage that doesn't always show up. Have they tested you for Bechets and other autoimmune diseases that are vascular in nature. Sjogrens can have some vasculitis but it is usually of the smaller vessels.

Do a search for small vessel vasculitis disease and large vessel vasculitis disease and see what into you can come up with. I would think that you would be aa candidate for Imuran or Cellcept or one of these meds. You want to stop the vasculitis as soon as you can. Many doctors are very slow to start meds for some reason. It is better to treat early on then to wait til later and have more trouble corralling the disease. Have you seen an immunologist? You can do searches for specialists in your state. YOu would do well to check out your university or teaching hospitals associated with universities. Good luck. Irish

SjoGirl

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Re: Flaring! My lymphocytes are under 400! 1/4 what they should be
« Reply #6 on: October 17, 2018, 01:28:54 PM »
First I am sorry as I know how frightening this can be. I have battled cytopenias of all sorts for years, in fact that was one of my first symptoms.

Second, low depends on the lab and scale being used. This is critically important because different labs use different scales for what is normal and what is not.

Third, I believe that it may be common for people with SJS to have low lymphocytes as well as other low readings. There is a book called a Body Out of Balance that I read when I first became ill and was diagnosed, it was quite helpful. If I recall correctly it's co-authored by a doctor and a patient.

Here's hoping these answers prove helpful. Hang in there, I started this journey 10 years ago and have since been diagnosed with RA (maybe with SjS, maybe not, Doc doesn't know for sure based on my crazy array of symptoms that don't fit neatly into a box). That said we've found treatment that works and has not been detrimental. I tried Plaquenil and could not tolerate, I'm doing quite well on Imuran.
Raynauds, sero-negative RA, Primary SjS, osteopenia, degenerative disc disease, disc protrusions,stenosis, Carpal tunnel,  poly neuropathy, myoclonus, hiatal hernia, esophagitis, viral infection, Leukopenia. Restasis, Vitamin D, B12, Evoxac, Lanzoprezole, calcium acetaminophen.