A rant...

[Daggar]

Wish it were that straightforward. Pred really messes with your emotions, clarity of thinking, hormone balance, sleep patterns, bone density, stomach lining, etc... All invisible from the outside, like a private hell.

Understood but that "C" word is most feared at this point especially for someone who had bladder issues beforehand.

[delorisdoe]

Understood but that "C" word is most feared at this point especially for someone who had bladder issues beforehand.

I am going to offer my two cents.

first off i was on 100mg of daily oral prednisone for 3 months, 50 for another 6 and then tapered to 30 for at least another year after that.
I was on 100-150mg of cytoxan for 2.5 years.

i am i conclude an expert on this subject.

I hate prednisone. I hate it for all of the reasons sange listed. I hate it for more than those reasons. Cytoxan is different. I hated the hair loss, also, cytoxan left me for dead. Also, we cant forget that it could be the cause of cancer years from now. Anyone who has been on these drugs probably would agree that you dont spend much time thinking about what cytoxan could be doing but you spend alot of your waking hours dealing with the effects of prednisone AND thanks to the prednisone there are alot more awake hours in the night to think. You cant go anywhere without wondering if people notice the change in you-of course they do. Prednisone makes you a psycological mess. I would make up staff schedules in the middle of the night after scrubbing the floor and it would take me 15 minutes to do. The next day I would check it over and they made no sense. My temper was uncontrollable and I thought I was completely loosing my mind. I could go 5 days with as little as 2 hours of sleep a night and not be tired until day 5.

Haveing said all of this if my daughter who is 13 was diagnosed with a disease that could be treated by either cytoxan or prednisone I would chose prednisone for her. Too bad we dont have a choice between the two. which one would you chose.

[Daggar]

A case of pick your poison - thankful they saved her life now but worried they'll take it in the end.

[ScreaminMeanie]

Daggar, if it's any consolation, I'm 20 years beyond 8 months of high-dose cytoxan (which almost killed me at the time), but I've had no bladder problems. 34 at initial dx, 54 now. Who knows what will happen next year or the year after, but for now, 20 years of whatever I've got going on now seems like a pretty good trade-off for the 8 months of misery I went through.

I would only take cytoxan again, however, if my wegs became life-threatening and everything else failed to work.

[pberggren1]

Daggar, if it's any consolation, I'm 20 years beyond 8 months of high-dose cytoxan (which almost killed me at the time), but I've had no bladder problems. 34 at initial dx, 54 now. Who knows what will happen next year or the year after, but for now, 20 years of whatever I've got going on now seems like a pretty good trade-off for the 8 months of misery I went through.

I would only take cytoxan again, however, if my wegs became life-threatening and everything else failed to work.

ditto to this

[Daggar]

Thanks SM.... hopefully when she goes off it in July it is for good!

...and ditto the pred when she gets to that point.

[Sangye]

Daggar, I didn't mean to diminish the effects/risks of ctx. I was on ctx twice and had bone marrow toxicity. I can't take it again. As bad as it made me feel, it was nothing compared to pred. From a holistic view pred is much more deeply damaging to the body. I'll be so happy when Holly can be off both of them.

[Jack]

It has been over 20 years since I last took ctx, but I had a lot at that time and was told that I should not use it again. I did not take much by way of precautions against future side effects because we did not have the internet then so my knowledge was limited. However, I've got away without trouble since then. It is now the Pred that is killing me.

[delorisdoe]

I totally have no ill feelings against the cytoxan I would just be so worried if it were my daughter on it as opposed to myself.

[Daggar]

We see a lot of studies related to immune suppressants - haven't seen much in the way of an alternative to pred. Has anyone read anything that would indicate an alternative in the future?