Hi all,
Anyone else have or had low white blood cells?? Is it from active lupus, what was your experience and was there any symptoms u noticed when they were low too?? Oh and Interistial lung disease too. Any info on that too would be of help to me…What symptoms did u exp w that complication also??
Thanks, sorry I have been a bit MIA, have not been feeling too well @ all.
Be well and u arre all always in my prayers.
Xo Suzie 
Hi Suzie D., Yes i have had a low white blood cell count, i think some of it is because of being on the Methotrexate injections. I do them once a week myself. I think though anyone can get a low white cell count just through having the Lupus as we are immuno-compromised through many other things. Another thing i get is that i get an abundance of white cells in my urine tests which would indicate an infection usually. But whenever they send it off it comes back there isnt an infection, just an abundance of white cells which is peculiar. I have always had this, plus also red cells at times. I have blood in my urine alot you see as well as the white cells. They say its due to inflammation. I was in hospital once and i had my urine tested and it was bright red, no usual colour just bright red. I remember having to take it up to the nurse and her freaking out and saying oh my goodness, is that yours? And saying did the doctor know, so is said yes, thats why i am doing the test! Anyway they lost the first test, so then i had to do it again. Anyway they came back and told me i had bladder cancer, which wasnt right. They just had made an assumption, they hadnt told me they had just assumed this though. So when they told me that i had bladder cancer, they just came over matter of fact said it, walked away, said they would be back later, and stroked my arm for about two seconds and left me crying. So then Dave came in saw me distressed and said whats on earth is up? So i told him, he said okay, lets find out whats going on. Anyway we ended up finding out that i still needed some more tests they just said that anyone who had that amount of blood in their urine it had to be bladder cancer nothing else. So thats why they had just told me it was, and hadnt bothered to say that it "Might be!" and just said that it "was bladder cancer". So you can imagine how i was feeling. It turned out, it was the cyclophosphomide i was on making my bladder bleed, even though i was doing everything i was told to do as i was in hospital at the time. But sorry thats another story to do with red cells, but with white cells its exactly the same i have always had the same thing, either an abundance in my urine, or a lack of white cells in my blood. So it is pretty confusing really. The lack of in white cells the blood is to do with the immunity, which is understandable really isnt it? I felt really tired and exhausted and worse than usual. I felt as though i was having more of a flare, if that helps and very weak, and shaky. Abit like how i have been feeling at the moment although i have been trying to just ignore it. If i manage to get to sleep at the moment, if i get woken up suddenly say by a noise as i am a quite light sleeper, it makes me very jittery, and i feel very funny heart wise, i know that sounds odd but it feels fluttery in my heart region if that makes sense. So i try and put my door buzzer on privacy during the day if i am going to have a sleep, trouble is people leave the door propped open with a big book or paper or something, so people still manage to get in and then when the door goes it makes me really jump as i have slightly nodded off to sleep. I am feeling so over tired at the moment. I dont feel like anyone else understands except for my LWL friends. My hands are all swollen and dry and cracked at the moment, i have been putting lots of hand cream on them that has been especially given to me by my doctor about a month ago. I bought a cheap pair of cotton gloves so i could leave the cream on to soak in and put the gloves over it, so that i would get more of an affect but not working so far, got to give it more of a chance yet i suppose. Hands are really sore though. I tried to get a doctors appointment today but no luck, so have to ring back tomorrow to try to get one for friday if i am lucky. As i have held out and held out, but i think i should now, as its been a while. I am so sorry that you are feeling so unwell as well Suzie. I really do wish i could wish all the illness away and get rid of everyones health issues by waving a magic wand just like that. You are so lovely and i wish i could do more to help you get rid of all the horrible things you are putting up with. You dont deserve any of them, neither does anyone else on here. Please know i am thinking of you all the time and praying for you and everyone else too. Just one more thing having a low white cell count of course makes us more susceptible to infections of any kind. I have had one thing after another lately. And it does affect how we are feeling, we are only human. Having so many lovely friends on LWL has helped me so much to keep me strong and keep going through al the difficult times. Sorry i am abit all over the place at the moment, i hope i am making sense. I am thinking of you, and i really really hope you start to feel a little better soon. Have you seen anyone about all this? Maybe its time to see your Rhuemy again, its hard to know what to do sometimes isnt it? Anyway my dear friend i will say bye for now as i am dont want to waffle on anymore. Take care, look after yourself, prayers, love and huge hugs Astrid40xoxox
Hi Rachel, I am so sorry to hear you are also having loads of problems as well, i know you have been ill. Its one thing after another for all of us isnt it? I dont know how we keep going sometimes. I think we just keep blocking it all out until we cant cope with any longer. I have been trying to get a doctors appointment today but no luck, they said to ring back tomorrow to get one for Friday, so i will do that. I have to make sure i ring dead on 8.30am or i wont have any chance of getting one. I will keep my fingers crossed. I think i just keep thinking that i hope whatever will go of its own accord. Its like my fingers being all swollen i keep thinking perhaps they will just calm down by themselves, but its been a few weeks now. I expect they will give me another slow release steroid injection. Better though to get it done then keep suffering really. Its just a nuisance having to keep going back and forth to get this and that, thats why i dont bother unless i really have to, and i know alot you Rachel and Suzie are the same, we just keep hoping and praying it will all disappear. I bought the cotton gloves, and have been using those with the hand cream, no better yet, but cant expect miracles in a couple of days, hehe. Anyway i wont go on, take care, love and hugs Astrid40xoxox
Thanks Astrid & Rachel, I guess it is jst another complication?! As u said Rach, everday it can b something NEW..... :( Well, another obstacle 2 face I guess....I really hope both of u feel a litte better at least , soon, Sickening how badly you R both suffering everyday!! Makes me so sad.....wish a cure would show up tomm., hey we can always have HOPE, right?? Love u guys!! Always in my prayers & thoughts.....Stay Stong & thanks for the info......Xo Suzie :0)
Hi Suzie D., Thankyou for your message, its so frustrating for all of us isnt it? I too wish that some really clever scientist somewhere would be doing whatever he/she does and say ureka, i have got it, hehe, and then that would be it, we would have a cure, that would be lovely. Like you said Suzie, we can always hope. I think all the time we hope, it keeps us going. And we all have each other. You are such a special lady. I admire you, you are amazing with all the things you manage to do, with home schooling your kids, the farm and everything else. I know you struggle. I dont know how we all keep going sometimes. It does definately help that we have all our amazing LWL friends. Love you loads!! You are in my thoughts are prayers too always. You keep going too, stay strong, think of the mad english women who waited for cha cha to come along, hehe, Love to you, take care my friend, look after yourself, thinking of you, love and hugs Astrid40xoxo
Hi Suzie,
I have Interistial lung disease. My lungs don't function at 100%, I am currently taking Symbicort inhaler only. I have major scar tissues on my lungs. The Lung doctor stated to me that I will be on the inhaler for the rest of my life and probably end up on oxygen.
I had a problem with low wbc’s before I got diagnosed. The doctors couldnt figure out what was going on so they just dismissed it. Now that I have gotten diagnosed I still continue to have a problem with a low WBC count. I’m not really sure what that means either. Sorry thats not much help. Just wanted you to know your not alone…
Susie,
I have lupus and secondary Sjogren's Syndrome (pron: show grins), dry mucous membranes--eyes, mouth lungs, any place where there are moisture producing glands. I also have intersitial lung disease (overall category) called bronchiechtasis (definitive diagnosis), the adult version of children born with cystic fribosis. Please don't gasp there are many levels of interstitail lung disease.
I use a nebulizer four times a day--a 7% saline solution 2x/day & liquid albuterol 4x/day. I can't clear secretions from my lungs. Long story short: it impedes on my life. However, if there's something special I want to attend, I bring all the "stuff."
I've never had a high or low WBC. I have to have a serious infection for my WBC to change.
This is a train on a journey that just keeps adding more rail cars. For me the train keeps chugging along. I know I'll live to 99 still hauling this great big load of autoimmune diseases.
Take it one day at a time. Some days you'll have skewed bloodwork and feel just fine and others just the opposite.
Hang in there!
USAgurl
dear suzie nightingale, i have been mia too for similar reasons. Sorry to hear you are not well. I will keep you in my prayers...God has been very good about answering them this past Easter...so i feel encouraged to ask for grace to cover you like a big umbrella..."The sun shall not smite thee by day, Nor the moon by night." psalm 121:6
i know what you mean. see my owie? lovely shingles...spread to jaw line and eyelid, but the ones on face may not get this bad bc of the anti viral
Rachel Simpkins said:
Yes mine are very low , along with other abnormal labs...The new Dr. will be rechecking why in June....seems like
everyday is a new problem...a sore ear, a sore throat, urinary troubles, you name it, I never know what I wake
up to....Ive been self treating until they see me...
My WBC is extremely low...only time it has been up is when I had a kidney infection and was in the hospital for 9 days....other than that, it is always low. I pick up every bug or virus that is in the air. It is very irritating but I have always thought it was part of Lupus...
Janice...oh my goodness, I am so sorry about your shingles...they are just the worst.
I never post on here...but do read all the posts, they are so helpful!!
Hugs to you all...
Julie
Once again, THANK U ALL< Hearing all of your stories & experiences have made it clearer for me. It just helps feeling like u are not alone & CRAZY.....;) I'll tell ya, we are ONE STRONG GROUP HERE!!! God Bless Us All! <3 What everyday brings to us, is unknown, but we take it & continue on in this journey, I believe in What God does not think you can handle, will not happen....So what that means to me, is we are ABLE & STRONG enough that it happens to us & we WILL be OK.....and we will be carried through it all by him & by HOPE.....As hard as it is & we all know we hang our heads & ask "Why"??? We continue on w our lives.....We know that we will make it thru.....I love what USAGirl said bout living till "99"...That is awesome & a Gr8 attitude to have, I say the same, THIS CRAP, (sorry but that is what I feel it is, lol) is NOT gonna take ME DOWN!!! NO WAY!! ;) Well, ALL of u my dear friends are an inspiration to me & help me thru the times when I feel confused & a bit lost.....so I want you to know how appreciative I am for that! You all hang in there & so will I, that is a DEAL!!! I will continue to pray for all of u.....STAY STRNG!! Thank U Again! Xo Suzie :0)
LOL....Astrid, Cha-Cha is doing so WONDERFUL....he is more beautiful & strong by the day.....And the "Mad Englsh Lady" comment really made me chuckle!! ;) You are too funny....and Thanks for the sweet comments about me, that is so sweet, but all that you said I do everyday, is what keeps me going & gives me the ability to fight thru all of this!! So I thank God for it all everyday!! I feel Blessed.... Thank U , and u stay strong too my friend!! Xo Suzie :0)
astrid40 said:
Hi Suzie D., Thankyou for your message, its so frustrating for all of us isnt it? I too wish that some really clever scientist somewhere would be doing whatever he/she does and say ureka, i have got it, hehe, and then that would be it, we would have a cure, that would be lovely. Like you said Suzie, we can always hope. I think all the time we hope, it keeps us going. And we all have each other. You are such a special lady. I admire you, you are amazing with all the things you manage to do, with home schooling your kids, the farm and everything else. I know you struggle. I dont know how we all keep going sometimes. It does definately help that we have all our amazing LWL friends. Love you loads!! You are in my thoughts are prayers too always. You keep going too, stay strong, think of the mad english women who waited for cha cha to come along, hehe, Love to you, take care my friend, look after yourself, thinking of you, love and hugs Astrid40xoxo
Ouch Janice....:( I am so sorry you are feeling so badly......that is so painful, from what I have heard! I am thinking of you & keeping you in my prayers always....Sending well wishes to you!! Stay Strong! Xo Suzie :0)
janice said:
i know what you mean. see my owie? lovely shingles...spread to jaw line and eyelid, but the ones on face may not get this bad bc of the anti viral
Rachel Simpkins said:Yes mine are very low , along with other abnormal labs...The new Dr. will be rechecking why in June....seems like
everyday is a new problem...a sore ear, a sore throat, urinary troubles, you name it, I never know what I wake
up to....Ive been self treating until they see me...
Thank U,, I believe it is from our bodies eating up the WBC's......destrying our immune defense in a way?? Lovely, isn't it...?! UGH,,,,Hang In There!! Suzie :0)
haitianbarbie88 said:
I had a problem with low wbc's before I got diagnosed. The doctors couldnt figure out what was going on so they just dismissed it. Now that I have gotten diagnosed I still continue to have a problem with a low WBC count. I'm not really sure what that means either. Sorry thats not much help. Just wanted you to know your not alone.....
Thank U, That is my fear, being more susceptible to catch everything in the air around me....Oh well, guess I need to be extra precautious....Stay Strong!! Suzie :0)
dietsister said:
My WBC is extremely low...only time it has been up is when I had a kidney infection and was in the hospital for 9 days....other than that, it is always low. I pick up every bug or virus that is in the air. It is very irritating but I have always thought it was part of Lupus...
Janice...oh my goodness, I am so sorry about your shingles...they are just the worst.
I never post on here...but do read all the posts, they are so helpful!!
Hugs to you all...
Julie
I thank u for replying....at least I know I am not alone...We just have to be grateful that we have each other for support & knowledge....my doc seemed to dismiss it kind of too, but he is a cardiologist, not a rheumy, so I don't think he is aware of what the autoimmune issues really are! I knew though, that is must be related! Not his fault, just not his specialty..Thanks So Much & Stay Strong!! Suzie :0)
haitianbarbie88 said:
I had a problem with low wbc's before I got diagnosed. The doctors couldnt figure out what was going on so they just dismissed it. Now that I have gotten diagnosed I still continue to have a problem with a low WBC count. I'm not really sure what that means either. Sorry thats not much help. Just wanted you to know your not alone.....
Hi there Suzie D, you Saying about being scared about being more susceptible about being able to catch everything around you in the air, i now carry a chiffon scarf in my bag, and sometimes i just have it loosely round my neck so that if someone is coughing in my direction i just discreetly lift it to my nose and mouth and look the other way trying not to look obvious as i am so sick of getting everything going. As i do keep picking up everyone else's bugs when i am out and about. When i was out in town only the other week with a friend/ carer there was this man and he coughed and sneezed so grossly not covering his nose or mouth and you could see the droplets it was disgusting, i have never seen anything so disguting before in my life and i thought thank goodness i had my scarf, there are so many disgusting ignorant people around its so unbelievable, people with no manners. so i try and protect myself now, and if that makes me look odd i really dont care now, its about self preservation. We have to do it. We girls or men have lower immunity so we have to protect ourselves dont we? I know it might sound abit over the top, but i have to try and keep myself safe, and since i have been doing this, i have honestly caught fewer things, seriously i have. Its just an idea. Take care, bye for now, love and hugs Astrid40xoxox
Suzie D. said:
Thank U, That is my fear, being more susceptible to catch everything in the air around me....Oh well, guess I need to be extra precautious....Stay Strong!! Suzie :0)
dietsister said:My WBC is extremely low...only time it has been up is when I had a kidney infection and was in the hospital for 9 days....other than that, it is always low. I pick up every bug or virus that is in the air. It is very irritating but I have always thought it was part of Lupus...
Janice...oh my goodness, I am so sorry about your shingles...they are just the worst.
I never post on here...but do read all the posts, they are so helpful!!
Hugs to you all...
Julie
Huge huge hugs and prayers to you precious friend from Astrid40xoxox
Suzie D. said:
Ouch Janice....:( I am so sorry you are feeling so badly......that is so painful, from what I have heard! I am thinking of you & keeping you in my prayers always....Sending well wishes to you!! Stay Strong! Xo Suzie :0)
janice said:i know what you mean. see my owie? lovely shingles...spread to jaw line and eyelid, but the ones on face may not get this bad bc of the anti viral
Rachel Simpkins said:Yes mine are very low , along with other abnormal labs...The new Dr. will be rechecking why in June....seems like
everyday is a new problem...a sore ear, a sore throat, urinary troubles, you name it, I never know what I wake
up to....Ive been self treating until they see me...
Hi Suzie D., You are welcome, I am pleased i made you laugh. Us english can be abit eccentric at times, i expect you know that though, hehe. Bless Cha Cha, He is so beautiful, i have loved seeing his pictures and his mummy too, and the other herd pictures. Its just totally amazing. I love animals though. Animals can be better than humans sometimes cant they? Not always, just sometimes, hehe. Anyway you take care, keep strong, love and hugs Astrid40xoxox
Suzie D. said:
LOL....Astrid, Cha-Cha is doing so WONDERFUL....he is more beautiful & strong by the day.....And the "Mad Englsh Lady" comment really made me chuckle!! ;) You are too funny....and Thanks for the sweet comments about me, that is so sweet, but all that you said I do everyday, is what keeps me going & gives me the ability to fight thru all of this!! So I thank God for it all everyday!! I feel Blessed.... Thank U , and u stay strong too my friend!! Xo Suzie :0)
astrid40 said:Hi Suzie D., Thankyou for your message, its so frustrating for all of us isnt it? I too wish that some really clever scientist somewhere would be doing whatever he/she does and say ureka, i have got it, hehe, and then that would be it, we would have a cure, that would be lovely. Like you said Suzie, we can always hope. I think all the time we hope, it keeps us going. And we all have each other. You are such a special lady. I admire you, you are amazing with all the things you manage to do, with home schooling your kids, the farm and everything else. I know you struggle. I dont know how we all keep going sometimes. It does definately help that we have all our amazing LWL friends. Love you loads!! You are in my thoughts are prayers too always. You keep going too, stay strong, think of the mad english women who waited for cha cha to come along, hehe, Love to you, take care my friend, look after yourself, thinking of you, love and hugs Astrid40xoxo