Finally getting off cytoxan ! and lowering preds

[DEE]

ok will give in giving myself brain ache will wait why tues to find out . bloods have been getting better over the last couple of months it was that i had several symptoms that dont seem to stay at bay
maybe a bank holiday weekend was not a good time to change

[RCOSSIO]

Dee...wow after reading this thread its amazing how great of a resource we all are...

Anyway I not here to make a recommendation as I see it...plenty of great one were already done.

When Cytoxan and I divorced, our marriage therapist recommended using Cellcept 500Mg 6x daily...I am not sure if height and weight matters, (mind you I am 6'4" and a muscular 260...maybe a little softer) anyway that dosage has worked out great for me and after one year my Rheumy will decreased to 4x daily. Good luck!

[Sangye]

maybe a bank holiday weekend was not a good time to change

LOL-- That's why last December Dr Seo wouldn't let me try to taper the pred. He was worried about me getting into trouble over the holidays.

[Sangye]

Oh man, I missed you Richard....

(btw Cellcept dosage isn't weight-based)

[RCOSSIO]

Thanks Sangye...between you and I...I am blaming my weight increase on Cellcept hahahah....thank goodness there is someone like you smarter than me.

and trust me I miss reading about us weggies....since there is only a few of us.

[DEE]

ok guys hubby at home with me till tues morn will ring someone if i get anything i cant cope with
thanks for your support DEEx

[elephant]

Huggies Dee!

[Lightwarrior]

I am going into my third week Cytoxan free and just finished my 6th once a week of 25mg Methotrexate. My rheumy told me to stay at 15 of pred for 3 weeks then drop 1mg every 2 weeks. Saw my urologist who doesn't think that increasing my urocrit (potassium citrate) is needed to reduce my seemingly constant production of calcium oxate monohydrate kidney stones, my rheumy thinks I have gone into high production because the pred is diverting calcium to my kidneys. I have passed at least a stone a week for the last 7 weeks and had a bit of adrenal insufficency two weeks ago.

I have been running temps from 101.7 high to 99 (I normally run between 96 and 97) morning and afternoon since Wednesday (mornings is what has been throwing me since I take my 15mg pred in the am). Of course today I couldn't get ahold of my rheumy so I called my pcp and she told me I would have to go into the ER (even though the nurses and docs know me and treat me well, listen to me and try to move me through quickly, it is one of my least favorite ways to spend my day). My question going in was Infection vs adrenal problem. They did blood cultures which of course I won't know about for a few days, chest xray, lab work and renal ultrasound. I listened to the ultrasound dication which showed strong stream from right kidney to bladder and no stream from left kidney to bladder with increased hydronephrosis over last ultrasound 3 weeks ago. The ER doc thought maybe I'm in process of passing another stone from left kidney. No stream though concerns me and I'll have results forwarded to my nephrologist in AM.

The other concern I have is that I expected my CBC with diff to improve once I stopped Cytoxan, these numbers aren't improving. Am Expecting too much?

COMPLETE BLOOD COUNT
WBC COUNT ** 3.2 (4.8-10.8) K/ul STAT
RBC COUNT ** 2.99 (4.2-5.4) M/ul STAT
HEMOGLOBIN ** 10.5 (12.0-16.0) g/dL STAT
HEMATOCRIT ** 30.8 (37-47) % STAT
MCV ** 103.1 (80-100) FL STAT
MCH ** 35.1 (27-31) p/ml STAT
MCHC 34.0 (32-37) % STAT
RDW ** 16.9 (11.6-14.6) STAT
PLATELET COUNT 189 (130-400) K/ul
DIFFERENTIAL SEGS ** 96 (50-70) %
LYMPHOCYTE ** 1 (25-40) % STAT
MONOS ** 2 (3-7) % STAT
MYELOCYTES ** 1 (0) % STAT
RBC MORPHOLOGY ANISOCYTOSIS STAT MODERATE OVALOCYTES PLT MORPHOLOGY PLATELET CLUMPS NOTED ON PERIPHERAL SMEAR

[Sangye]

I think your WBCs should have bounced back sooner after stopping ctx, but I don't know how low they were on ctx. You're also quite anemic as I'm sure you realize. What's the explanation for that?

I don't see how a measly 15mg pred is diverting that much calcium. Are they running magnesium levels? What's your potassium doing?

[elephant]

Lightwarrior, I am wondering if you have a kidney infection and inflammation secondary to the stones. I would be concerned too about the " no stream." I know you are on a high dose of methotrexate maybe that is keeping your WBC low. Your hemoglobin is low.
I think that lowering your prednisone 1 mg every two weeks is too fast esp if you were in adrenal insufficiency.
Are you having any other WG symptoms?