LUPUS UK
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White cell count in boots ☹️

Hello all , Happy Christmas to everyone ⛄️⛄️

Had wbc and some other bloods done yesterday and rheumy Nurse phoned to say wbc and neurophils are still very low , kidney function a bit abnormal and urate is raised . I have to get them repeated on 29th . If things remain like this I will be referred to haematology for further investigation. Not my best Christmas present ever !! I have been running to loo alot but nurse did a drip last week and no sign of infection. Im feeling very tired but if i sit down I won’t get up and my youngest is home from uni in Holland tomorrow so can’t sit down 😀😀

Love to all merry Christmas and a happy new year xxxxx

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hi WV,

are you still off the plaquinil?

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Still off plaquenil and due rituximab January/February . Tired but otherwise have avoided infections so far . How are you , hope you have a wonderful Christmas xxxx

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Does the rituximab treatment also lower wbc? I'm well. Just trying to get through the Holidays with as little stress as possible! and also avoid the germs everyone is spreading! LOL

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Rituximab foes lower wbc as well 😀 stress is hard to avoid but can avoid the coughers and wash the skin off my hands !!!! Lots of luv to you and your family for Christmas xxxxx

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yes try not to stress and enjoy your Holiday! We all need the joy. Hope you have a Merry Christmas!

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Thank you 🎄⛄️🎄xx

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Oh no that’s the absolute pits Weathervane you poor thing! Autoimmunity, sons, Christmas all such a bad combination for this kind of poorliness. I wonder what’s occurring for you? I do hope the return of your uni son and festivities are uplifting for your neutrophils and other stuff to somehow perk up by 29th. Try to see rest as a necessity. Your boys won’t want you to be sick just in order to make the Christmas traditional. Xx

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Hi TW , you are in same position im sure preparing for your boys for Christmas . Im in reasonable form, just like to know cause. Hope to have a rest after Christmas is over 😀 Hope you and your family have a wonderful and a Happy New Year xxxx

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Aww glad you feel not too bad at least. I’m a bit fungal in all departments just now but otherwise prepared for three strapping young adult sons to be sharing our tiny new 2 bed home for our first Christmas ever under this roof! X

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Plenty of walks on the beach may be required after a couple of days. Keep well and have a merry time. Xx

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Oh dear Weathervane, what a bummer. Do you think it's the Ritux that's knocking your WBC? I think we all feel a bit vulnerable over the Xmas/New Year period as so many of our HCP's are on annual leave. I've been referred to haematology in the past for low blood counts - they know their stuff. My bloods are monitored by them from a distance but they've never needed to intervene. When was your last Ritux infusion?

Christmas is lovely but I'm always so relieved when it's over . . . Try to relax and let everyone share the load xxx

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Hi clare good to hear from you ! Last rituximab was ini july and they realised then thst my bloods were not being monitored closely enough. I think i would like haematology to be involved just to be sure but will see what rheumy thinks after bloods next week. I hope you have a wonderful Christmas and the buzz word is delegate 😀🎄⛄️🎄

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xoxo...I wish I had something to say...I just want you to know I am thinking of you xo

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Thank you leslie , much appreciated! I hope you have a lovely peaceful Christmas ⛄️⛄️

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My 11 year old daughter is similar at the moment her lymphocytes are low. She had red and white blood cells in her urine and also her creatinine gas gone from 37 to 44.She isn't diagnosed with anything yet and not been on any medication. She had anaemia in the past and has a lot of lupus symptoms although only a low positive ANA. They want to redo her FBC and U&E in 6 weeks and she has a kidney scan on the 28th but I'm worried sick in the meantime. I hope you are ok add and that it's just the meds causing the low wbc x

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Hi.

I have SLE with renal involvement. Just to be on the safe side and only to cover all bases, get your daughter a Renal Specialist referral. The gold standard of seeing whats going on at kidney level with autoimmune stuff is a kidney biopsy. Whatever antibodies might be effecting your daughter would most easily be seen under the microscope with the biopsy sample if it is the kidneys being effected.

X

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Thanks for the reply, I have been wanting this for years but Dr's keep saying that her kidneys are fine because her GFR was ok and nothing was seen on the MRI. She is having an abdominal doppler tomorrow. I have noticed her creatinine has gone from 32 last year to 44 but I don't really know if that is good or bad. I'm assuming something has come up or they wouldn't be requesting U&E bloods again x

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I'm from Australia so I don't know weather pathology creatinine numbers are recorded the same way there. But a rise of levels in the urine shows something might be a little off ? - its good that its prompted the Doctors to look for a cause. I know the dynamics of protein leak for full on renal problems - but I'm guessing there are 'many' other things that can cause it.

Creatinine is a byproduct of muscle use/metabolism ? and levels are kept even by the kidneys. Mild spikes can be caused by too much exercise, too much meat, taking a wrong medication but given what your Doctors are doing I dare say they think something needs to be looked into ?

I'm in a (SLE) - post nasty renal flare - semi healed state. I'd lost 50% GFR and the protein leak was so high it was enough to wipe out the rest of my kidneys due to pressure on the renal capillaries. Now a few years later my GFR is near 90% but the creatinine/albumin ratio ...protein etc. stuff is still leaking at a reasonably high rate. But this is a very specific problem to me - caused by class 3 & 5 Lupus Nephritis. (I'm 49 years old and this was my second renal flare - so that doesn't help) I'm on lots of immuno - suppressants and BP medications to keep the pressure off the capillaries.

Just keep on top of those Doctors backs until they find an answer !!!!

I still think if you ultimately hit a dead end - a renal specialist would be in order. It would't hurt anybody for this to happen.

I really hope you find an answer soon.

xoxoxox

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My kidney specialist said the same thing when I thought it was out of wack but he wasn't concerned. So your GP probably is right. Although he did comment on my lupus flaring when my Rhuemy didn't when I saw him the same day. Good luck with your daughter and hopefully they can do a biopsy if they suspect something.

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Thanks shauna , it’s very worrying when you don’t have a diagnosis but its so much worse when you child is involved. Sending you lots of positive thoughts and wishes and i hope you find the cause soon . I hope you and your family have a lovely Christmas 🎄 ⛄️🎄

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I would like to wish everyone a very Merry Christmas and (more lmportantly) a Happy and HEALTHY New Year. I'm fortunate at the moment that thanks to my team of specialists +GP. I am in a happy place not needing pain killers at this time, and feeling normal as much as I can remember (diagnosed 20 odd years ago S.L.E and Sjogren's, Psoriasis) lived through Cancer twice etc etc am at 61yrs happy with my life. Even living with Lupus. So with all the Newbies to Lupus there is life after lupus. The point I'm trying to say is celebrate everything you can no matter how small. Enjoy the positives and a major one for me was don't STRESS it's a killer, it took me a long time to learn but seriously changed my life. Hoping this will inspire you to a better life with lupus. Wishing you all much happier and healthier life. Love to all. ❤️💙💚💜💛❤️💙💚💜💛❤️💙💚💜💛❤️💙💚💜💛❤️

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Happy Christmas weathervane. So sorry to read of your bloods problems!. Not a nice Xmas present so I do hope they're improved in time for new year!. It's good your being kept a close eye on!. It does feel like it's never ending for us as always something!. I'm having more tests in Jan!. Hope you've had a lovely time with your son and you can rest up soon. Fingers tightly crossed for you. Keep us posted. X

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Thank you both , i hope you had a lovely Christmas, best wishes for 2018

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Hi weathervane,

I'm sorry to hear about your woes.

Just make sure you do nothing but REST - no matter what, keep the fluids up the best you can and try to keep away from sources of infection if you can.

Thinking of you being 'served everything in bed'

Lot of love,

X

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Thanks Freckle , will do that , hope you had a lovely Christmas 🎄 xx

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Just an update on my daughter refused the above comment . She he has been exhausted and sleeping a lot. She has had styes 4 times since Christmas and has not been able to eat much without feeling sick. I had to collect her from school on Wednesday as she was sick in school. She had her abdominal scan which showed she had splenogmaly which is an enlarged spleen. My GP marked it as no action required. I have contacted her paediatrician as I am aware that this is not good as she has low lymphocytes and had anaemia and recurrent infections. Thankfully her paediatrician is concerned that this is an unusual finding and warrants further investigation so I have been given an appointment for the 29th January. She is not concerned about her kidney function and said blood can be seen in urine without any cause to worry. She did say that spleen enlargement and low lymphocytes can be seen in connective tissue disease and she would be writing to my daughter's rheumatologist in Alder Hey. How are you doing Weathervane? X

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I had similar problems last year and Haematology did a bone marrow biopsy which confirmed it was just the lupus/cerebral vasculitis/sjogrens causing the low counts and that it was nothing sinister. Fully understand where you're coming from.... I felt exhausted and still do, but it could be lots worse. Good luck with whatever happens next xx

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Hi shauna , i am so glad your paediatrician is going to see you , your gp seems to be rather negligent. I hope all goes well at your appointment on the 29th . Im much the same , though a slipped disc has overshadowed my blood worries as ive been in an awful lot of pain . I have just had blood taken again on Friday so will see next week if any change. Best wishes again and do let us know how you and your daughter get on xxx

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