Finally getting off cytoxan ! and lowering preds

[DEE]

back from gp x ray in morning plus shed load of blood test and cultures of the bathroom department
hubby has just come back from the hospital i have to get my x ray done at ten mins before gp appointment
good job he loves me returning again tomorrow

[pberggren1]

Dee, I'm glad to hear that the Wegs consultantant ordered all that stuff including a cxr. I hope you are comfortable with him and he knows what he is doing.

[DEE]

thanks Phil yes im lucky gp five mins from house rang him this morning he rang back in half an hour ,left message for wg consult he rang after his clinic
i just know things are not right
hopefully things will get sorted DEEx

[elephant]

Good Dee, thinking of you and hoping tonight will be restful and one bathroom trip.

[DEE]

got the first of my blood results back INR dropped to 1.70 so they have put my warfarin up to 8mg daily
i was hopeing i was going to be better because they were talking of me maybe coming off in oct dont think it will happen now back to weekly inr test
will get main test results back monday when im going to talk to wg consult again
wiill let u know DEEx

[Jack]

My INR goes up and down like a yo-yo even though my diet and the drugs I take don't change. I'm on only 2-3 mg of Warfarin (target INR 2-3), but I still bruise at the slightest touch.

[elephant]

Sorry to hear about that Dee. Here is a yellow hug!

[DEE]

Thanks Jack and Elephant
my target is 2-3 too just abit concerned as it was that level 1.7 when i had blood clots and on 9mg and because of me having the cough again
gp said my chest sounds clear and i reminded him that it did when i had blood clots before hopeing im reading to much into situation and wait and see what monday brings
Thanks again for your support DEEx

[Sangye]

Dee, I don't remember if you had blood clots in your lungs. If so, given that you have Wegs also, it might mean that you need to stay on warfarin for life. My JHU hematologist told me the combo of pulmonary emboli and Wegs increases the risk of future clots to an unacceptable degree, and lifetime warfarin coverage is necessary.

Also, when my lungs were filled with clots (and I do mean filled), they sounded perfectly clear and my pulse oxygen was 100% (at high altitude, no less). I could hardly breathe and insisted on a chest CT. Boy, wasn't my doctor surprised.... The radiologist paged him to the CT room stat.

[Jack]

I'm on Warfarin for life following my PE.