Low White blood cell level

[Stonebroke]

Hi Everyone, I am 14 weeks post transplant and everything has gone really well so far. Then I get a call from the transplant nurses after my fortnightly visit to the hospital this week, my wbc had gone down to 1, I had to go back to hospital the next day they have stopped my valgancyclovir and co trimoxazole and gave me an injection of filgrastim and told me to basically go home and stay in and have as little contact with people as possible. Has anyone else had similar wbc problems and what was their outcome? many thanks stonebroke.

[melsbabe]

Hi. Stoneybroke.

My wbc did the same afyer aprox 6 months post transplant wbc down to 1 and cmv was rampant i was put back onto valgan and they stopped my mmf for aprox 6 weeks i am now all good but on a lower dose mmf as this is the cause of the wbc drop good luck and stay posative your in the best hands.

[kidneytransplan in reply to melsbabe]

Please tell me , what is MMF? I am a post 4 1/2 month kidney transplant patient with the same problem. I also am experiencing skin problems from Tacro.

[LeilaN in reply to kidneytransplan]

MMF - mycophenolate mofetil

What kind of skin problems and where?

[kidneytransplan in reply to LeilaN]

I have a rash This begins with little pink dots all over both arms with some maturing into larger ones with a black interior gradually disappearing. My skin then becomes very dry and itchy.

My other problem deals with sudden loss of muscle replaced with SEVERE sagging and wrinkling of my skin. This has been sudden. This has nothing to do with lack of exercise. My strength is excellent. I work out 5 days a week at my club lasting at least 1 1/2 hours daily... (rowing ,,,1 hour), (spinning 50 min.),weight lifting (50 min.) treadmill (30 min) etc.

[kidneytransplan in reply to kidneytransplan]

PS: The rash is also on upper back.

[LeilaN in reply to kidneytransplan]

I heard from a few people while reported similar problems. I had muscle loss during PD and slowly regaining back.

How long since you had a transplant? Have you mentioned this to your renal team?

[kidneytransplan in reply to LeilaN]

My transplant was 4 1/2 months ago.

My Transplant Team was not helpful and referred me to my primary care doctor. He has referred me to a dermatologist . I have an appointment with him in 3 days.

[LeilaN in reply to kidneytransplan]

Hope they will be more helpful!

[Tashe]

Hi Stonebroke

I too am 14 weeks post-transplant and I too have just had a low WBC result (last Tuesday}. I had repeat bloods on Wed. and was told to stop taking Myfortic {immuno-suppressant} but to keep taking Valganciclovir and Prograf 7mg- twice a day,along with

Co trimoxazol and Prednisolone 7.5mg. Seems a very different treatment to yours.

A repeat test on Friday showed my result still at 1.8 and I have to have repeat bloods tomorrow Sunday! It's doubly worrying for me as I did not had a smooth ride for the first 6 weeks post-transplant, having 2 rejection episodes and spending the time in hospital having adsorption { antibody removal} treatment. I did have an ABO, non- compatible transplant.

It's good to finally put this query to a forum and hope somebody has some reassurance... All the best to you Stonebroke

Tashe

[Abdirashid]

Not as low as that but believe me this guys know what they are doing, my advice is eat food rich with iron, that's the best bit now you can eat cheese banana and even beans enjoy as long as kidney function is ok then nothing to worry about. Get well soon

[Tashe]

Thanks Abdirashid.

Had blood tests this morning and have to go back later to see doctor and have an ultrasound scan on kidney. You're right they know what they're doing and I'm getting fantastic care.

Good health!

[manbreak]

I'm now 14weeks post Transplant and my wbc is down to 1.2 feel very crappy but I have been told to stay at home and rest good thing is kidney is fine.......its good to know this has happened to others and they are fine something like this to me with my 1st kidney over and 30yrs I was very ill and lost that kidney but times have changed a lot and medical science has moved on lots.....

[Stonebroke]

Thanks for your replies all, I am now 6 months post transplant and all is fine. After my drop of wbc and dosage of filgrastim my wbc went up to 6 but has settled around 3.5 now. Every thing else is fantastic and I feel great. I hope all who have similar ups and downs have the same results many thanks and good luck to all Stonebroke

[kidneytransplan]

My wbc is at 1.9. I had my transplant 5 months ago.EVERYTHING else is very good.This low count has been ongoing. They are now sending me to a Hematologist. Scared to Death ! Any comments ?

[Kwanster]

Hello Stonebroke,

I’m actually being admitted to the hospolital asi type this. I’m waiting for a room at admissions. I have the same problem. I’m 12 weeks+ 3 days removed from transplant. My wbc count is .8 do it actually is worse a bit. I’m going to read up what everyone here has to say to kinda know what to expect. Thanks for the opp for me to see what’s ahead!

Kwanster

[charlen24 in reply to Kwanster]

I'm the same thing it'll be almost 4 months post transplant and the coordinator was telling me that my Wbc was really low it was 1.1 last week now it's down to .8 , really nervous they want me to stop taking myfortic and do another round of CBC lab on Wednesday after Christmas. I'm also taking Valcyte for CMV that contributes to the lowering of my Wbc. Just hoping for the best as of this point.

[Xappis in reply to charlen24]

I'm at 5 month post transplant and my WBC is currently at 2.9 which is the lowest it has ever been. My doctor also had me stop taking Myfortic, Valcyte and also Losec in addition to reducing my Phosphate to one tablet a day. After 1 week my WBC increased to 3.5. My creatinine is about 1.5.

[Shamli in reply to Xappis]

Is there any increase in creatinine level? For my husband, post kidney transplant, WBC is normalised but there's a slow increase in creatinine level.

[Kernick]

That happened to me, the wbc count came back fast after the shots ( twice ). Has been steady ever since. You should be fine.

[Kernick]

I have had several episodes of low wbc. The anti rejection meds inhibit white cell production. So part of it is just that. Ajusting the meds can help but not right away hence the filgrastim This manipulation freaks me out but that is how it is done. If you have an infection or some virus activity that makes it worse. After the last episode of wbc my count went back up to 4 . They adjusted my tacrolimus up and my latest labs showed a decrease in wbc to 3. The transplant coordinator told me that that was where they wanted it. We will see. I hope this helps.

[wlocke]

Hi I was glad to see this post because I'm going through the same thing right now and it's concerning. My CMV has been negative from pre op and continues to be. My team has made some med changes and i'm waiting for them to go back up. Good luck and i will be watching for you progress.

[Shamli]

My husband's wbc was 2500 and cmv dna quantitative result is 2000copies/ml. Does it mean he is infected or safe? Pls reply.

[Santaponsa1]

Hi. I can see some of you experienced wbc problem some seven years ago or less. I’m 61/2 yrs post transplant and I’m just experiencing same. Blood count dipped to 1.9 & my dr change me from tacrolimus (prograf 3mg) to .75 evarsus daily so unsure how it’ll do, however how did you all feel with drop in wbc. Over the past few months I’m experiencing a weakness in both legs to which I can barely walk any distance now and thinking above might be partly causing same? My drop in aforementioned is because after all this time I had the EBV virus which is dangerous as you all will already know which can attack the kidney function which it has duly done. My GFR is only 26 and creating is 174. Recent biopsy has shown very borderline rejection so I’ve a fight on my hands, Dr doing everything under the sun to save same but at the same time worrying. We touched on dialysis which I’ve never had as I received a live kidney when at 10% function Ny transplant wasn’t compatible but done really well considering. Look forward to hearing how you all felt when wbc levels dropped, I thank you all in advance. Take Care.