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Daggar
05-20-2011, 11:25 AM
Got the pred taper schedule from Holly's doctors today and she will go from 17.5mg down to 10mg by mid-June and hold there. She still receives the June 2nd iv treatment to help the taper. They're planning on doing lab work every two weeks after the iv treatment and if all goes well she is scheduled to switch to Imuran on July 11th.

Only concern today was a lower wbc.... she has been holding around the 4.1-4.5 level lately. PR3 is only 2.6 .... very first time it has ever fallen into the "normal range" of <=5.0 .... CRP is still 0.0.

Does prednisone lower wbc like ctx or does it do the opposite? Neph seems to think the addition of Perindopril may be doing that?

All-in-all it is nice to finally hear specific dates!!:thumbsup:

pberggren1
05-20-2011, 12:24 PM
Typically pred increases the wbc.

What IV treatment will Holly be getting on June 2?

What is Perindopril?

Daggar
05-20-2011, 12:37 PM
She gets her last iv treatment of methylprednisolone.

Perindopril is an ACE inihibitor to control high blood pressure - protects her kidneys from further damage while on pred. I believe they will lower the dose as the amount of pred is tapered and if her bp stays normal.

She received 1g of iv methylpred and her daily oral dose of pred for the past 4 months.... quite the ordeal!!

pberggren1
05-20-2011, 02:44 PM
How often has she been getting the IV methylprednisolone (solumedrol)?

Daggar
05-21-2011, 02:06 AM
Once a month - started in February. Reason given was to try and eliminate any possibility of further damage being done to kidneys and to help taper her oral dosage.

It did help as they hoped for but the side effects have been tough to deal with.

Lightwarrior
05-21-2011, 03:12 AM
Does prednisone lower wbc like ctx or does it do the opposite? Neph seems to think the addition of Perindopril may be doing that?

All-in-all it is nice to finally hear specific dates!!:thumbsup:

Cytoxin will drop your wbc's so will Methotrexate. My wbc's ran anywhere from 2.0 to 4.0 when I was on Cytoxin, I have had to cut back my methotrexate doses. My doc's won't let me go out in the unit (I work in ICU) if I drop below 3.5. Then I am confined to my office (boring).

maria garcia
05-21-2011, 04:50 AM
Once a month - started in February. Reason given was to try and eliminate any possibility of further damage being done to kidneys and to help taper her oral dosage.


It did help as they hoped for but the side effects have been tough to deal with.

Dagger Im new in the forum and Ialso have a daughter who might have Wegeners. What was Hollys first symptoms?

Daggar
05-21-2011, 06:01 AM
Hi Maria,

I've been reading some of your posts and can understand your "stress" if you're still using the term "might" for Wegeners. The not knowing is the worst time for anyone. Have the doctors made any efforts to confirm?

Holly had a sinus infection after the H1N1 shot (about a month after) that went away with antibiotics but now looking back there were some bloody nose issues in the spring which we chalked up to the dryness in Alberta, Canada. She sprained her ankle in early summer which she went to physio for but the real illness didn't happen until the Fall when both ankles started to give her problems and she was losing her energy quite quickly so we bypassed our GP and took her into the Children's Hospital ER where things progressed very rapidly so we're lucky we got her in when we did. In a perfect world we would of gotten her in much sooner but her kidney symptoms were what the doctor called "silent".