side effects

[Sangye]

Lightwarrior, if you only had extreme fatigue, I'd chalk it up to ctx. But shortness of breath can be lung involvement or pulmonary emboli. I would think a CT of the lungs with pulmonary angiogram protocol is in order.

Please tell me you meant 150 or 200mg ctx. 250 mg is awfully high! They need to make sure your blood count isn't decreasing too quickly. It might still be in normal range, but a steep decline could reflect bone marrow suppression. That's what ctx does to me.

I hope you feel better soon.

[Lightwarrior]

No its 250. I do weigh 289, probably more like 300 now and I'm 5'10. Wish I'd got around to losiing weight before this hit. I'm worried about bone marrow supression, but thought maybe I was weirding out. I will call my Rheumy tommorrow. Yes i did(do) have lung involvement. The nehprologist and pulmonologist (i've worked side by side with them for 10 years) I think are too close to me to be completely objective, the rheumy has been right on target so far. Thanks for the feedback. I do feel better today, not as nauseauted and I seem to have lost the runs by doing the old clear liquid toast diet.

[Sangye]

Okay-- make sure the rheumy knows Weggies are 23% more likely to develop DVTs (famous "WeCLOT" study). Glad you're feeling a bit better today!

[jola57]

lightwarrior, glad you seem to feel better. For me the runs are just a way of life. i always joke that I scope out where the bathrooms are the same way thieves look for exits. You know the rule of not getting up in tha last 1hr of flight, well I think that i would be an exception to the rule or everyone would be very sorry indeed.

[elephant]

I am glad you are feeling better Lightwarrior. I just wanted to add, that I had the runs last summer and my potassium went down below normal....just keep an eye on that. One of the symptoms of low potassium....is feeling tired.....I am sure you know this very well ....I know you are on top of your game!

[Sangye]

i always joke that I scope out where the bathrooms are the same way thieves look for exits.

LOL-- This is how I was when I was on Cellcept. I haven't had it for awhile, but I'm still a bit hypervigiliant about knowing where the bathrooms are.

I'm definitely this way about chairs, because I can't stand or walk for long. I can tell you where the nearest chair is everywhere I go. I scope them out silently. If I have a friend with me, sometimes I tell them about this "inner life" I lead-- always noting where are the chairs, what have my hands touched, where's the nearest hand sanitizer, how far a walk is it, how long do I have to stand, who in the room is coughing/sneezing/looks sick, etc.... Like I have a mental notetaker.

[kmcgee21]

Our dr. closely monitors his creatinine level (which we have been told is a good indicator of kidney function) and at last count it was at 1.7 (1.3 being normal). He does still have some blood and protein in his urine, but all docs are pleased with the creatine. So please in fact that his dose of cytoxan was reduced to 150 mg from 200 mg.

[Lightwarrior]

Runs as a new way of life
LOL, I do notice i have changed the way I scope out a room. Today I added two scrub bottoms and clean underwear to my personal drawer in my office. I haven't needed those since I completed menopause. I have new certain routes I travel based on available seating to take quick sit/breathers. At least we prove we are all quite adaptable, sounds like none of us give up we just find new ways to do what we want to do. That makes us pretty unique :-)

[elephant]

In the last 30 years I pee so much I should really have a rolling portable potty! I am picky about my potty, it has to be a clean place. Or I might as well buy a toddler portable potty that plays music when you sit on it.

[Sangye]

I might as well buy a toddler portable potty that plays music when you sit on it.

This had me doubled over laughing.