PDA

View Full Version : Update on high W.B.C. & very scared & worried, reummy pulled me off imuran & low pred



~LUVMYFLOWERS~
01-30-2011, 06:28 AM
Hi Everyone,
As some know i was supose to go get my reclast infusion this fri to protect my bones becuse of the 40mg of predisone reumy has me on a day. Well for
the past 2 wk's i've been feeling extremly tired,little red dot's under my skin,
& so weak i have to hold on to the walls just to walk to the bathroom, feel's like my leg's just wont hold me up. The fatigue & weakness is even worser than my lupus or sjogrens flair's. No appetite, and still no weight gain witch reummy said i would gain on the pred & imuran.
Last week i got the yeast infection from one of my autoammuine diseases witch thats normal about twice a year, but in 1 day time i noticed it it had ran my whole body so went to dr. gave me diflucan & checked my urine & no kidney inf, and told dr. i was extremely weak & i thought maby the imuran had
droped my red blood count to low. He said to tell my reumy fri when i go for reclast infusion & tell her to check my blood count's.
So friday when i got to reummys office i demanded they check my blood work before the reclast told them my symptoms, and my reumy did & it come back
it was my white blood count was 18.400 extremly high! The nurse told me my reumatologist wanted to talk to me first & since i was not to see her fri i know something was wrong with my blood work. She was very concerned and ask did i have an infection, i told her not that i knew of not for my wbc to be that high, no fever, just i was severely weak & fatigued & felt very bad & a little cough.
So bless goodness she pulled me off my Imuran imadiatly & drop my predisone to 40mg a day to 20mg a day & gave me a prescription of zithromax
z-pack incase i had an upper respatory infection due to me coughing!
I had been trying to keep upbeat with all thats going on and test after test
even lip biopsy was neg for sjorgrens in the salave gland's, But this just totaly
got me so depressed i cryed all way home, that high of white count and it was climbing before i started imuran & pred it was 13.500 whitch is elevated high is a huge Red Flag for Leukemia or hodgkins, witch ive been suspecting
& fearing the back of my mind for a while now becuse of my symptoms.

So now im off the med's that was supose to slow the inflamation down in my brain becuse of cns vasculitis, and i horrified the vasculitis is going to take what little thinking i have left as it has been progressing fairley fast due to info on m.r.i's.
And also could not do the reclast infusion becuse of high wbc.

I have an appt to go back to see my rummy in 10 more days, and she was wanting me to come in sooner, so she told me if im still feeling verry weak
by monday jan 31, go to my family dr. & let him ck my blood work again and see what he thinks! So i pray the wbc go's down if not im horrified there gonna want to put me in hospital and do more test, Becuse if i dont have a severe infection some where it can only be leukemia or some kind of hodgkins
cancer with a white count of 18.400, my wbc has been elevated for several years now but it steadly jumping started about 3 mont's ago, And with my dermatologist also told me last month that my reummy seriously needed to check me for leukemia or lymphoma, if it is i hope & pray they get serious
now and check for it ,and if it is cancer it's in the earley stages to where i
will have a good chance if beating it with med's.

Thank's for letting me vent on these dr's And thank's so much for listening
& careing and all the wonderful people here at WHL!
Dont know how i would make it through all this without you all!!!!!
Gentle Hug's to all and wishing all less pain today!! Love Diane,,,

Nonna
01-30-2011, 10:55 AM
i know it's hard to do, but don't borrow trouble. I have the cancer scare every other year or so with my mammograms. I know you can't help but be afraid. yet you can't control it; what is .... is. Try your best to go with the flow of things, it's easier stress wise. Stress will only make you feel worse. I won't tell you that each time it gets easier, it doesn't. you just have to endure. You have lupus, you have the strength to fight anything.

Trust in the Lord and He will carry you through,
I know, I do,
Nonna

Angel Oliver
01-30-2011, 12:03 PM
I am so sorry you are feeling so sick and now have this added worry.My dad had leukima and the fear for you must be high.But like Nonna said,its not an easy time,but just rest,take each day as it comes,no forward thinking.There could be other reasons why its so high.Your mind can play tricks ,so keep resting untill you see your doctor.Soon enough he will find out what the problem is.Until then,one day at a time,keep posting here and try not to worry,easy for me to say i know.Thinking of you.
lots of love
Amanda.xxxx

Peridot_Gem
01-30-2011, 02:17 PM
Hello Diane,
Oh i am sorry mate, it sounded like things was on a steady level since we last chatted and now this.
I am lost for words in one way knowing your such a lovely woman and i am hoping it's not cancer [seen to much of that mate] i do hope better news comes in tomorrow when you go back.
With your saliva coming back negative are they trying to state now you have'nt got sjogrens disease with what you've gone through? but i am pleased to hear you yeast infection as cleared more.

Diane i'm not a religious person mate but i do hope and pray your next lot of tests show totally different and nothing in the signs of cancer shows.

Thinking of you dearly diane ((Hugs & Kisses)) dear friend Terri xxxxxx

~LUVMYFLOWERS~
01-30-2011, 05:47 PM
Thank's Nonna,
For the kind word's, I try my best not to borrow trouble as i surley have my plate overflowing now. Just seem's at time's just as you pick your self up from one sickness or set back and
start your can do attitide & healing process here here come's another set back.
thanks so much for careing, just needed time to adjust & regroup again and gather my strength, And i do trust the lord, he is the reason ive made it this far & wouldent make it without him
for sure!
Gentle Hug's to you!!! Diane,,
i know it's hard to do, but don't borrow trouble. I have the cancer scare every other year or so with my mammograms. I know you can't help but be afraid. yet you can't control it; what is .... is. Try your best to go with the flow of things, it's easier stress wise. Stress will only make you feel worse. I won't tell you that each time it gets easier, it doesn't. you just have to endure. You have lupus, you have the strength to fight anything.

Trust in the Lord and He will carry you through,
I know, I do,
Nonna

~LUVMYFLOWERS~
01-30-2011, 05:58 PM
Thank's Amanda,
I just needed a little time to take a deep breath and regroup to go again, It scared me
realy bad for my wbc to jump by 5,000 in 4 week's when i didnt feel like i had a bad infection
other than extreemly weak & fatigue & thats normal for me with a lupus flair except never been quite that weak. But hopeing it may have just been the yeast that had run my body, and
what ever it is the antibotic will bring my wbc back down. Thank's for reminding me to rember my one day @ a time!
Lot's of love to you also!!!!! Diane,,
I am so sorry you are feeling so sick and now have this added worry.My dad had leukima and the fear for you must be high.But like Nonna said,its not an easy time,but just rest,take each day as it comes,no forward thinking.There could be other reasons why its so high.Your mind can play tricks ,so keep resting untill you see your doctor.Soon enough he will find out what the problem is.Until then,one day at a time,keep posting here and try not to worry,easy for me to say i know.Thinking of you.
lots of love
Amanda.xxxx

~LUVMYFLOWERS~
01-30-2011, 06:26 PM
Thank's so much Terri,
I surley needed a little time on this set back as not only the quicky riseing wbc, but that also
jerked me off my med's that were supose to help my brain disease. I think they call it a 1 -2 punch! LOL! I do wonder sometime's though.I feel a little better just my legs still get very weak by noon, been resting more today and takeing it easy and will the rest of the week, reumatologist said to go to family dr. mon if im still the same sick as i was friday. But if i
feel still little better tamarrow with just leg & body weakness by mid-day im going to try
and wait for my next appt with my reummy in 9 more day's feb,11th.Maby the antibotics are
doing some good! I surley hope so. But if i get to feeling worse before then ill go to the hospital
and get checked.
Reumatologist 2 of them still say i have sjogren's to many physical symptoms as of now!
Thank's terri for the prayer's I alway's need them! and the thoughtfulness, & for careing!.
As we do endure a lot with these diseases but always manage to pick our self's up and
take a deep breath and continue to good fight!!!!!
Lot's of love!! & Gentle Hug's to you!! hope you are feeling better your self!!!! Diane,,
Hello Diane,
Oh i am sorry mate, it sounded like things was on a steady level since we last chatted and now this.
I am lost for words in one way knowing your such a lovely woman and i am hoping it's not cancer [seen to much of that mate] i do hope better news comes in tomorrow when you go back.
With your saliva coming back negative are they trying to state now you have'nt got sjogrens disease with what you've gone through? but i am pleased to hear you yeast infection as cleared more.

Diane i'm not a religious person mate but i do hope and pray your next lot of tests show totally different and nothing in the signs of cancer shows.

Thinking of you dearly diane ((Hugs & Kisses)) dear friend Terri xxxxxx

magistramarla
01-31-2011, 11:19 AM
Hi Diane,
I'm thinking of you and hoping that you are feeling better by today. Let us know if you see your PCP today.
BTW, there are lots of people who are sero-negative for Sjogren's but still have all the symptoms. You are very
lucky to have docs who seem to be willing to treat the symptoms without the "verification" of the tests.
Gentle Hugs,
Marla

Angel Oliver
01-31-2011, 11:43 AM
Hi Diane,

Just know you are in my thoughts and hope your appt went ok today .

love
Amanda.xxxx

Peridot_Gem
01-31-2011, 12:58 PM
Thank's so much Terri,
I surley needed a little time on this set back as not only the quicky riseing wbc, but that also
jerked me off my med's that were supose to help my brain disease. I think they call it a 1 -2 punch! LOL! I do wonder sometime's though.I feel a little better just my legs still get very weak by noon, been resting more today and takeing it easy and will the rest of the week, reumatologist said to go to family dr. mon if im still the same sick as i was friday. But if i
feel still little better tamarrow with just leg & body weakness by mid-day im going to try
and wait for my next appt with my reummy in 9 more day's feb,11th.Maby the antibotics are
doing some good! I surley hope so. But if i get to feeling worse before then ill go to the hospital
and get checked.
Reumatologist 2 of them still say i have sjogren's to many physical symptoms as of now!
Thank's terri for the prayer's I alway's need them! and the thoughtfulness, & for careing!.
As we do endure a lot with these diseases but always manage to pick our self's up and
take a deep breath and continue to good fight!!!!!
Lot's of love!! & Gentle Hug's to you!! hope you are feeling better your self!!!! Diane,,Hello Diane,
It is alot pulling you off your meds though in one go, you would think they would withdraw you off slowly because all meds can have side affects done in one go, unless it was the extreme and refering your legs that's the sjogren's because i have that day after day.
I dow blame you resting and taking it more easy, mind you i've had an easy day this afternoon but this morning i had to shower Bruno and trying to get some stretch in the back of my legs is murder i bet your the same feeling it's like your ligaments are getting shorter.
Diane if you do have to go to hospital before you appointment fingers crossed you don't have to let us know how you are.

Just take it easy and get loads of rest. All my love to you ((Hugs & Kisses)) Terri xxx

tgal
01-31-2011, 02:01 PM
I know it is hard but I have to agree with Nonna. We all have so much going on it is very important that we don't "borrow trouble" (my mothers favorite saying). Don't add more stress to yourself by wondering what is going to be said at the doctor. Try to deal with what you know is wrong and when you get to the doctor then you can deal with what is going on for sure. I may not be near as bad as your mind is making it out to be so try not to stress no matter how hard it is.

We are here for you and I will be sending good thoughts your way!

~LUVMYFLOWERS~
02-01-2011, 04:16 AM
Thank's Amanda for checking on me! And yes thank goodness my appt went
very well, only took my family g.p. of 20 yr's ive been seeing 20 min to figure out
why my wbc was so high & i was so sick, and that's sad that my Rheumatologist
should of known what it was also instead of freaking out and scareing me. My gp
said when he went out the room waiting on blood work to come back, I think the dr's did it this time or we doctor's. It was the high dose of predisone!
Lot's of love to you!! Hope you have a good day!! Diane,,
Hi Diane,

Just know you are in my thoughts and hope your appt went ok today .

love
Amanda.xxxx

~LUVMYFLOWERS~
02-01-2011, 04:27 AM
Thank's Mari,
I know it's just hard sometimes expecialy when your reummy is stressing
and dont know what to do with you when you have so much going on. I do
belive it's time i try to switch reummy's to the other one in the same office as the one im useing now. The reummy im seeing is fresh out of school, ive been seeing her for 3yrs now
and every time a lupus problem or sjogrens problem comes up she dosent know what to do and sends me to some one else for all kind's of test. So i ask her nurse am i her only lupus & sjorg paitent , nurse said yes her other paitents are mainly arthirtis paitent's.
And the other reummy in the same office is lot's older and has had many luppie paitents.
May be my best bet?
Lot's of love to you!! Hope you have a great day!!! Diane,,
I know it is hard but I have to agree with Nonna. We all have so much going on it is very important that we don't "borrow trouble" (my mothers favorite saying). Don't add more stress to yourself by wondering what is going to be said at the doctor. Try to deal with what you know is wrong and when you get to the doctor then you can deal with what is going on for sure. I may not be near as bad as your mind is making it out to be so try not to stress no matter how hard it is.

We are here for you and I will be sending good thoughts your way!

~LUVMYFLOWERS~
02-01-2011, 04:39 AM
Thank's Marla,
For keeping me in your thought's and checking on me! Yes im feeling better, and did keep my appt becuse of still very weak & make sure wbc was not still riseing. I know i blessed becuse even though all bloods & lip biopsy is negative for sjorgrens , my dr's insistn it's sjorgrens becuse of all the physical symptoms and are treateing me for it. Guess im gonna just be
Sero- Negative too, dr's keep saying sometimes it takes year's to pop up in blood work and
sometime's it dosent.
Gentle Hug's to you!! Hope you have a great day!! Diane,,
Hi Diane,
I'm thinking of you and hoping that you are feeling better by today. Let us know if you see your PCP today.
BTW, there are lots of people who are sero-negative for Sjogren's but still have all the symptoms. You are very
lucky to have docs who seem to be willing to treat the symptoms without the "verification" of the tests.
Gentle Hugs,
Marla

Nonna
02-01-2011, 04:58 AM
Hi Glad it was just the prednisone. Hugs to you. I'm gonna go see the GP myself; been having some problems..... maybe that's the pred also..... teehee

nonna

~LUVMYFLOWERS~
02-01-2011, 05:33 AM
Hi Terri, Yes, I am going through awafull withdrawal symptoms from reummy jerking me of the 40mg predisone, she should of known to taper me down slowley, and gp also agreed, the
hard chills & sweat's hot & cold is withdrawal from her pulling the pred from 40mg to 20mg a day. I went on to my gp appt, becuse of my rheumatologist scareing me so, she always want's to throw me to someone else when she should of known her self, I think it may be time to switch to the other more knowledgeable reummy that is in the same office as her
at least he has 20yr's exp with lupus & sjogrens paitent's! She jus kept saying you must have an
infection somewhere and gave me the antibotics? Even the dr's she keeps sending me to are complaneing stateing , I dont know why she keeps sending you here your problems are all related to lupus & sjogrens & ryanuad's.
My family gp did blood count and only took him 20 min to figure out way my wbc was riseing so fast it was the predisone! He ask how long i was on the 30mg a day & how many days ive been up to my 40mg a day , ive been at 40mg for 5 days, during that 5 days my wbc had climed 1,000
a day that i was on the 40mg. My rheumatologist should of known that herself, instead of her freaking out and got me freaked out LOL! My family gp also seemed not happy with my reummy
not knowing that herself & jerking me off and sending me to him to figure it out. He said who
is doctoring you now for your lupus & other autoamuine diseases, I told him my rummy that he sent me to, but my other rummy in the teaching hospital was supose to be guideing her on the treatment plan he had fixed for me when he dx'ed me with cns vasculitis ,lupus & sjogrens.

Any way he said the dr's made me sick this time, checked me for swolen lympnode's looked in my mouth all the lupus ulcer's & yeast still, looked at my red & white swolen hand's. and
i ask him way are all the dr's always looking at my red hands , i ask what are you all looking for
or what dose it tell you about my hands. He said lupus! The scalded red swolen look red around
your cuticals, it tells them it's lupus. I just needed to know why every dr i see keeps looking at my hand's now i know.

I also ask for an b-12 shot & he said sure to try and build my stregenth back up, And i do feel
lot's better this morn, just the b-12 shot woke me @ 3:00am this morn. And a relief it's was the
predisone makeing me so sick not the C word.
Hubby going with me to my next rummy visit on the feb 11th & were gonn have a talk about lowering the pred to maby 20 mg a day, my family gp seem to think the 40mg was a bit
to much also, gp said the pred that high rushes you body so hard till at mid day your body is exaulted it's self then you crash down, leaveing you very weak.
Lot's of Love to you!!!! Hope your leg's and Pain is better today!! And you have a good day today! Gentle Hug's toooo!!!!!!!!!!! Diane,,

tgal
02-01-2011, 05:59 AM
Hey, I pulled my daughter out of her kindergarten class when she was little and switched her to another because she had a first year teacher who had no idea how to handle students. This is WAY more important then that. I wouldn't go anywhere that didn't understand the diseases that I have. I say find someone who has dealt with this before

~LUVMYFLOWERS~
02-01-2011, 06:00 AM
Thank's Nonna, And Hug's to you too! Hope you have a good dr. visit and it's
nothing serious. Girl i thought i was going through to change again with all the
hot flashe's and chill's, I was fanning myself one min and had the heater on the next min!
Hope you have a good day!! Gentle Hug's to you!! Diane,,
Hi Glad it was just the prednisone. Hugs to you. I'm gonna go see the GP myself; been having some problems..... maybe that's the pred also..... teehee

nonna

Peridot_Gem
02-01-2011, 11:56 AM
Hi Diane,
Christ mate i am shocked with what you've put. For a start off a Rheumo like that should'nt be treating people it's like they're trying to kill you not help you. It's a good job your GP is on the ball concerning your health and i really hope your suffering with the shakes etc is'nt hurting you to much, been there diane just once when i was 21 and my god 6mths i had it for it drove me soft in the end, they took me off 30 odd tablets a day as they'd over balanced the hormones of my brain and left me with brain damage to the right side.

[ Some of the Doctor's want shooting mate it does get me angry]

I do hope to god your going to move back to your other Rheumo and how long will it take for your reading to drop as the doctor mentioned it??
Diane they keep checking your hands and fingers mate as that shows how strong the Lupus is working, it's going mad at me at the moment my fingers are purple, it's underneath my nails inside my nails and my hands are swollen and i can't keep my nails long as it gives me pain in the growth plus i type with gloves, sometimes it makes me feel odd. I do hope you get a boost from your B12 shot to help your system.

I've got a feeling i won't be put on the plaquenil, went and had my eyes tested today my eye sight in less than a year as gone down hill and she's told me i've got a lot of problems going on with direct light, the numbness to my face and pain in my head on the left side all connecting to my eye sight besides, the doctor should recieve her letter by thursday and the Doctor's recieved the hospital letter this afternoon after i phoned them to fax it through, so i won't know what's happening till either friday if they can get me in at the Doctor's or early next week.

Diane do takecare mate and rest up and i know it's goning to be hard coping.

All my love to & kisses your way. Love Terri xxxxxxxxx

Angel Oliver
02-01-2011, 01:28 PM
Oh such great news and hopefully now you'll feel less stressed n worried.Pheeeeeeeew!! Hope you go rest now,so happy you found out.

lots of love
Amanda.xxxx

~LUVMYFLOWERS~
02-02-2011, 04:56 AM
Hi Terri,
Yes girl I will be asking the reummy im useing now if she is still reporting and working with the
specialist reumy in the teaching hospital for sure. She had put me on those med's at that strength due to the lupus specialist and what he saw on my mri how bad the sjogrens had dammaged my brain and was progressing pretty fast.
But dont think ive ever been that sick with lupus & sjogrens togeather, feeling little better
though. My hand's are a mess black blood lines under my nails nail fungas for 2 yr's now,
swolen, purple red,& white. I posted a photo of my hand you can go look at
on my profile page, also the little blood spots i get under my skin.
So hopeing they will still put you on your plaquinel as it will help your flairs, got my eyes checked 2 months ago when they thought maby i would be getting the plaquinel, i have the numb side of face, my eyes were little worse , changed my strength on glasses, but give
me the go ahead for plaq but my disease was to far progressed for plaq so the put
me on the imuran & strong pred.

Sure hopeing you get good new's on the plaq go ahead or something to help you out
so you can feel better!!! love ya lot's , Wishing you the best of LUCK!! Hope yopu have a good day today!!!!!!!!!!!!!!!!! Diane,,

Peridot_Gem
02-02-2011, 06:50 AM
Hello Diane,
I hope your abit better today mate and the side affects off the drugs ain't to bad but it can take days and weeks sometimes for the reaction's to move, you was lucky your GP tested you and acted quickly.
It is a shame the sjogrens is acting quickly though, when i saw the Rheumo he said the sjogren's was strong with me and the lupus was going mad also with it plus my autoimmune was high, i've never know sympstoms so strong with this disease it's a wonder we're all alive and kicking.

I'll take a look at your picture on your profille of your hands, if they're like mine it's a terrible sore process and hot and cold water is a total nightmare, i forgot to tell you the rheumo mentioned me putting my hands in hotwater, wheather he could understand god knows but i told him straight you can knock that one on the head for a start off, it's a good job ste was there to do alot of communicating.lol

My skin specialist wanted me on presidone straight away when he diagnosed me and that was before he refered me to the rhuemo but when he checked with my other meds and found they would counter react he left it alone plus telling me it was a steroid i said no way, he wanted it on me for the strength as it's surposed to be the best apparentley but if i can't go on the plaquenil then it's sticking to the paracetamol, then swapping to iburophen when on a monthly what a game it is.

Diane have a lovely day mate & thinking of you dearly and hoping you'll be ok, Hugs & Kisses to you mate Terri xxxxxxxx