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Thread: Set Back on treatment plan due to high white blood count, for cns lupus ,sjogrens

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    Unhappy Set Back on treatment plan due to high white blood count, for cns lupus ,sjogrens

    well, went to reumatologist appt to get on Imuran, & 40mg predisone a day
    also dr's very woried about strong dose of predisone hollowing out my bones
    and makeing them fragel to breaking,also is going to do an infusion of reclast
    as i have a lot of stomach issues already ,so they say the reclast not so
    tough on gi problems. and also 2 citracal's a day along with 1,000 vit d.

    Well they have to check your blood work to make sure your healthy enough
    to start the med's and, reumys nurse called me on my white blood count &
    said it came back high 13.2000 & i could not start the imuran with my wbc that high. she ask if i had a kidney infection, i told her no.
    that high white blood count kinda scared me as for last 2 weeks been having chills,low fever, acheing to the bone in my legs, weak legs, no appetite
    and lost 4 lb's, was little worried maby lymphoma if i was not haveing a very
    bad lupus or sjogrens flair, witch those are the symptoms i have with the flairs
    except this one was worse lot's more pain and very weak.
    So i got very upset on the set back becuse of the severly fast progression in
    my brain from the vasculitis caused by either lupus or the sjogrens.

    So i went to after hours clinic yesterday morn ,also had to do my lip biopsy
    yesterday @ 10:30am, told dr. @ after hours to check my urine to se if i had a
    kidney infection.
    he checked urine and did a flu swab just to make sure i didnt have flu
    with symptoms of chills & acheing. And all come back clear & negative!
    So dr. said i was probly haveing a bad flair with my lupus & sjogrens.

    So reumatologist nurse told me to come back this wed & do another cbc test
    to see if my white count is gone back down. I pray it go's back down.
    Still in pain from lip biopsy this morn, ent dr. took 8 little salava gland's
    guess he wanted to make sure he got enough LOL! I hope so dont
    want to do that again! have a lip full of stitches .

    If white count is not down, scared of what test there gonna want to do
    then to see why all the sudden my white count is high, if it's not becuse of an
    infection in my body.
    Plus they set me up for a 6 hr scycatric type test to evaluate how much
    brain damage the vasculitis has done so far, and will do another one after ive been on the imuran & predisone for a few months plus another mir to
    see if the med's is slowing the brain dammage down and the lupus & sjogrens.

    Sorry such a long post, was giveing you all an update on what's going on.
    Both my reumatologist call me there SPECIAL patient lol I wish i wasent
    so special! So ready to get off this roller coaster ride!!
    would appreciate any input if someone has had there wbc go high with
    there lupus or sjogrens.

    Reumatologist also said if imuran & predisone showes on my mri check in aprox 2 month's that the brain disease is still progressing fast, there talking
    about a brain biopsy! Just dont know if i will agree to that! So praying
    the imuran & predisone work, if wbc will go back down.

    Thank you all so much for listening & careing and being here!!!!
    Love Diane,
    ~Where Hope Grow's, Miracle's Blossom~
    Diagnosed,
    (CNS) Vasculitis, Lupus, Neuro-Behcet's, Raynaud's, Fibromyalgia, Diabetes, Earley M.S., Buerger's Syndrome.

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    Hello Diane,
    God i am sorry mate with what's been happening and you have been looking on the bright side hoping things would slow down abit with the medication they've recommended.
    Well they've been testing why your counts been so high plus your wondering what's doing it but like yourself i'd have to really think hard about a brain biopsy but i've been looking up about white cells being so high plus causes and i thought this info below i'm adding might help, as it says the main causes for the cells to be high.

    Loads of love to you mate and i'm thinking about you Terri xxx


    There are several possible causes for a high white blood cell count. This count is high when there are more disease-fighting cells in your body. The technical term for this condition is leukocytosis.

    Different medical practices may have different limits by which they define high white blood cell count. A count of 10,500 leukocytes in one microliter of blood is widely accepted as a high count. The threshold may vary between sex and age.

    White blood cells are categorized by five subtypes, and each type has a different activity in fighting disease. When you get the results of your white blood cell count, they will usually specify what the levels are of all the different types. Usually, a high count is only caused by an increase in one type of white blood cells.

    A high white blood cell count is indicative of an immune system problem that increases their production; a disease in your bone marrow that causes high blood cell production; a reaction to some drug that is used to enhance cell production; or the increase expected when your body is fighting off an infection.

    There are some more specific reasons why your white blood cell count may be high:

    Acute lymphocytic leukemia (ALL) is a cancer that lives in the bone marrow and blood. This disease is a rapidly progressive one. Children are more affected by this than any other type of cancer, although adults can develop the disease as well.

    Drugs like epinephrine and corticosteroids can affect your white cell count.

    Measles is an infection that affects mainly the respiratory tract. It is very contagious. The signs include skin rash, fever, sore throat, inflamed eyes, runny nose and cough. The measles vaccine is an excellent way to protect children against this disease, but outside of the civilized countries, many children are not vaccinated. This disease will spread rapidly among people who have not had the vaccination.

    Rheumatoid arthritis is a serious type of arthritis from which you will experience joint damage and pain. It attacks your joints' lining and this causes swelling. In turn, that leads to throbbing, aching pain and possibly eventual deformity. Rheumatoid arthritis, also called RA, can make even the easiest of normal activities hard to accomplish.

    Some of the other causes of high white blood cell count include:

    Stress, be it emotional or physical
    Smoking
    Tuberculosis
    Tissue damage, like one receives with burns
    Acute or chronic myelogenous leukemia
    Chronic or acute lymphocytic leukemia
    Whooping cough
    Severe allergic reactions
    Myelofibrosis
    Polycythemia vera
    Other viral infections
    Other bacterial infections

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    I do not have Sjorgen's and do not have any experience with the issues that you described. Perido_Gem has given you some great information on some of the causes of high WBC.
    I just wanted to let you know that your fears and frustrations are so familiar to those of us who suffer with this disease and the many ways that it wreaks havoc on our bodies. Please know that we are here to help you in any way that we can.
    I, too, hope that your WBC count goes down and, if there is some type of infection, that it is treated and taken care of. I wish you the very best.

    Peace and Blessings
    Namaste
    Saysusie
    Look For The Good and Praise It!

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    Oh Diane thank you so much for coming back and giving up the update! I hope that your lip gets to feeling better soon. You have already received some wonderful information and I want to throw one other thing out. What kind of meds are you on? I know that a couple of my meds can cause high white blood cell counts in select people. It isn't normal but it is possible. You might want to do a check of the meds or just post them here and we can look them up for you and see if any of them have that as a side effect. It is worth looking into!
    Mari

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    Hi Diane,
    I have Mixed Connective Tissue Disease, and Sjogren's is one of the things that I have. Last April, I attended a Sjogren's conference in San Francisco and I posted about it here. If you do a search, you can find those posts. I had the lip biopsy done at the SJS research clinic at UCSF. It was positive. They want me to go back after two years of treatment for another one - oh joy. It really wasn't too bad, though. It's healed nicely and all that is there is a little nodule that I can feel with my tongue. One thing that I've been told - be very sure that a reputable lab that has experience with lip biopsies (preferably a teaching hosp.) reads your results.

    I can't take steroids at all because I already have weakened bones. I've already had surgery for the Avascular Necrosis. The surgeon shaved back the part of my knee bone that was rotting away. I got this without taking steroids, but they are supposed to make it much, much worse.
    I'm glad that your rheumy considers you to be special - it sounds like he cares.
    Good luck, and keep us informed.
    Hugs,
    Marla

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    Hi Terri,
    And thank's so much for the info an the high wbc, And i have decided not to go with brain biopsy, unless maby life of death situation. I have a great and well informed reumatologist now
    he is at a big teaching univerisity he is my 3rd reumy. Didnt take him very long to go through my medical files and ask tons of questions, did toms of blood work and x-rays on hands & chest.
    When he looked at my mir that was done 2 months ago compared to the one done 3 months prior to that one the brain lesions had progressed very fast and was on going demyelation
    and my memory getting worse all the time. He told me on first visit that even though my blood work keept comming back normal except for ana positive with all the physcial symptoms that
    i had lupus and sjogrens and raynuads.
    And lupus or sjogrens had gone to my brain and has caused cns vasculitis, witch is imflamation
    in my brain caused by one or both the diseases, it is very rare for those to go to the brain
    but it dose happen and is one of the more severe organ complacations where it dose attack youre internal organs and brain.
    the inflamation stops the blood flow and oxygen from getting to your brain, therefore that part dies,if it cant rerout it self. They do blood work every 2 to 3 months my r/a keeps comming back negative.
    I do worry about the leukemia beeing one of the corprates that is hideing in my bone marrow
    as every other disease has been ruled out with blood work and test, my dermatologist also sugested it to me last week when reumy sent me to him for skin biopsy. He looked at my files and last skin punch biopsy and was very serious told me Diane i would seriously suggest you'r dr's check you for Lymphoma, or Leukemia. Girl i liked to hit the floor! He said this has been going on to long and with every thing else being ruled out and your symptoms you need to be ckecked for both of those, So i left out his office crying again, It seems to never end with
    this disease and doctors.
    So i told my reumatologist last week what he suggested, she said well you have to much
    autoamuine stuff going on with sjogrens and lupus we dont think it can be lymphoma or leukemia but the high white count may change there minds on that.
    lord knows what test are next if wbc comes back still high.
    And havent changed any med's for the last 5 months, though i do take lots of meds and they keep adding more!!! LOL!!
    Time i take all my med's and vitimans im to full to eat!

    Thank's so much terri & lot's of love to you!!!!! & Gentle Hug's!!!! Love Diane
    ~Where Hope Grow's, Miracle's Blossom~
    Diagnosed,
    (CNS) Vasculitis, Lupus, Neuro-Behcet's, Raynaud's, Fibromyalgia, Diabetes, Earley M.S., Buerger's Syndrome.

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    Hi Saysusie,
    Thank you so much for cking on me and the comforting word's that's worth more than a million dollar's to me!! And dont' know what id do without you guy's a the WHL Forum!!!
    becuse unless someone is going what your going through or dealing and living with
    the same diseases as you they realy have no idea! And sure hope they never do.
    I have my prety red butterfly face rash going on this morn, but lip biopsy is geting better if stitches will hurry up and disolve. Found some of my grand's hot colored straws been useing them for my water & coffee & soft soups.

    Thank's so much saysusie, and Thank god i do look for the good and do praise it.
    love your signature saying!!! Hug's and Blessings to you!!!! Love Diane,
    ~Where Hope Grow's, Miracle's Blossom~
    Diagnosed,
    (CNS) Vasculitis, Lupus, Neuro-Behcet's, Raynaud's, Fibromyalgia, Diabetes, Earley M.S., Buerger's Syndrome.

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    Hi Tgal,
    Thank you for checking on me, just been haveing a hard time dealing with all the new info of dermatologist sujesting lymphoms and leukemia, on top of i cant slow the progression of brain disease cause wbc is high, though i have started the predisone & it also helps to stop the inflamation in your body & brain hope it helps slow it a bit till i can start the imuran
    My meds have been the same for 5 months now i have a long list, and blood work every
    30 to 60 days. blood work has been fine till last wek when testing for all bloods and liver etc. to take imuran. This is my med list so far
    advil - fever
    lortab- pain
    xanax-nerves ans anxiety
    prilosec - gi isues
    zestril- high blood presure
    pamelor- nerve pain
    premarin
    1.25- hystromectomy total even ovarys due to endrometrosis @ age 26yr's old
    evoxac- sjogrens dry mouth and every thing else lol!
    neurontin-nerve pain and sleep good
    Vitimans-barleans fish oil1,000mg,flax oil 1,000mg, vit d 1,000 Univera advanced cell renewal
    it has b vitimans, alo vera, grape seed, ginko,grene tea, bark extract and other natural stuff.
    Norvasc- for my ryanuads white toes & fingers and red and keep my fingers from busting open.
    was 5mg predisone, but just last 2 days dr up it to 40 mg a day to go with imuran if wbc comes back down.

    Girl im takeing so much med's now i can hardly keep up with it HE,HE LOL
    I even bought me the vita mix juicer 3weeks ago to try and get healther, been blending
    smoothies with raw fruit & vegies and spinich, taste pretty good if you add more fruit and then put raw carroitts and spinich in & flavored yougert,he,he at this point ill try any thing to feel better!!!

    thank you so much for careing & the info, hope you are haveing a pain free and good day!!!
    Hug's to you!!!!!!!!!!!!!!!!!!!!! Love diane
    ~Where Hope Grow's, Miracle's Blossom~
    Diagnosed,
    (CNS) Vasculitis, Lupus, Neuro-Behcet's, Raynaud's, Fibromyalgia, Diabetes, Earley M.S., Buerger's Syndrome.

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    Hi Marla,
    Thanks for careing and posting the info on your conference, I will surley look it up and read it.
    the more you know on your disease the more you may can help your self or at least know what to look for that may be a symptom so you know whats going on and what's causeing it and why.
    Bless your heart cause of your bones already weekend and you cant take the predisone.
    I have diabetes , no meds for it just diet and exercise now but it jumps up from time to time
    for no reason but sjogrens or lupus attacking my pancreacus.
    So i also wory about the stronger doasage of predisone as it makes your sugar go up. and
    yesterday it jumped to 170 & thats high for me. So long as my sugar stays below 200 i guess it will be ok.
    And with the high dose pred thats why there doing a infusion fo reclast to help my bones
    plus they put me on 2 citracals a day with 1,000 mg vit d.
    Thank's so much, and hope you get to felling better with your knees and sjogrens
    and you have a wonderful pain free day!!!!!

    GENTLE HUG'S TO YOU!! Love Diane,
    ~Where Hope Grow's, Miracle's Blossom~
    Diagnosed,
    (CNS) Vasculitis, Lupus, Neuro-Behcet's, Raynaud's, Fibromyalgia, Diabetes, Earley M.S., Buerger's Syndrome.

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    Quote Originally Posted by ~LUVMYFLOWERS~ View Post
    Hi Terri,
    And thank's so much for the info an the high wbc, And i have decided not to go with brain biopsy, unless maby life of death situation. I have a great and well informed reumatologist now
    he is at a big teaching univerisity he is my 3rd reumy. Didnt take him very long to go through my medical files and ask tons of questions, did toms of blood work and x-rays on hands & chest.
    When he looked at my mir that was done 2 months ago compared to the one done 3 months prior to that one the brain lesions had progressed very fast and was on going demyelation
    and my memory getting worse all the time. He told me on first visit that even though my blood work keept comming back normal except for ana positive with all the physcial symptoms that
    i had lupus and sjogrens and raynuads.
    And lupus or sjogrens had gone to my brain and has caused cns vasculitis, witch is imflamation
    in my brain caused by one or both the diseases, it is very rare for those to go to the brain
    but it dose happen and is one of the more severe organ complacations where it dose attack youre internal organs and brain.
    the inflamation stops the blood flow and oxygen from getting to your brain, therefore that part dies,if it cant rerout it self. They do blood work every 2 to 3 months my r/a keeps comming back negative.
    I do worry about the leukemia beeing one of the corprates that is hideing in my bone marrow
    as every other disease has been ruled out with blood work and test, my dermatologist also sugested it to me last week when reumy sent me to him for skin biopsy. He looked at my files and last skin punch biopsy and was very serious told me Diane i would seriously suggest you'r dr's check you for Lymphoma, or Leukemia. Girl i liked to hit the floor! He said this has been going on to long and with every thing else being ruled out and your symptoms you need to be ckecked for both of those, So i left out his office crying again, It seems to never end with
    this disease and doctors.
    So i told my reumatologist last week what he suggested, she said well you have to much
    autoamuine stuff going on with sjogrens and lupus we dont think it can be lymphoma or leukemia but the high white count may change there minds on that.
    lord knows what test are next if wbc comes back still high.
    And havent changed any med's for the last 5 months, though i do take lots of meds and they keep adding more!!! LOL!!
    Time i take all my med's and vitimans im to full to eat!

    Thank's so much terri & lot's of love to you!!!!! & Gentle Hug's!!!! Love Diane
    Hello Diane,
    I've been looking up again mate and the main one affecting the cns vasculitis is the Sjogrens disease, my god we have got a pleasent life ahead of we by what i've been reading but i am happy after all this time you've got a Rheumo specialist that does'nt mess about.
    Refering your autoimmune disease it's going daft at the moment like mine as my skin specialist told me mine was doing alot of harm.

    Well i am touching wood for you that it does'nt come to Leukimea and that's why your white cells are high because that's all you need and i dow blame you crying to lose it all out, i've always told my hubby if they ever told me i had it i would have to laugh after what i've gone through all these years and it would top the lot for me, as it runs through my dads side strokes and cancer, he had both and i've had strokes so far and my moms sides fluid on the lungs/diabetes/ heart attacks and they've all gone with what i mentioned, i think that's why they're testing me constantley.

    Love & Hugs to you mate. xxxx

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