Question about flare, I don't agree with my Rheumy's treatment

[ScreaminMeanie]

I was doing really well on CTX before last month. I don't feel comfortable with Rituxan. he wanted to start me on that when I was diagnosed, but I declined. I do agree with you that it is best to talk to him in person. Thanks for your input

No worries - everyone's body reacts to drugs differently! CTX literally almost killed me - it also made me feel worse than the WG made me feel, made me sterile and made all my hair fall out, to boot! RTX made me feel better instantly, and so far (6 months), I've had no ill effects from it. So I *always* suggest it as an alternative to CTX! LOL

All I really want is for you to have a doctor who is responsive to your needs.......

[NicShaf]

Thanks Screamin

[delorisdoe]

No worries - everyone's body reacts to drugs differently! CTX literally almost killed me - it also made me feel worse than the WG made me feel, made me sterile and made all my hair fall out, to boot! RTX made me feel better instantly, and so far (6 months), I've had no ill effects from it. So I *always* suggest it as an alternative to CTX! LOL

All I really want is for you to have a doctor who is responsive to your needs.......

How long were you on cytoxan Meanie? Does your hair still fall out. Mine does @ an alarming rate. I hate it. I have yet to complain about being sterile though. It also almost killed me and made me feel like crap but I have always attributed that to being on it for so long.

Nicole, I in my 2 years never had a slow taper of cytoxan. I did however have a slow taper of prednisone and "bump ups of it when my symptoms would return." Cytoxan did put me in remission but only after more than 2 years and I have been told by many here that that does not occur anymore so...I would expect to not be in remission yet but perhaps be calm enough for a switch. I also have been told that a bump in prednisone can help a doctor determine if symptoms are wegeners related. I am not sure I explained that right but you are seeing him tuesday so I would think the prednisone increase should hold you over until then.

[ScreaminMeanie]

Leigh, I was on CTX for 10 months, and they stopped it abruptly when I was dx'ed with PCP. The MTX has also made me lose some hair - nowhere near as bad as CTX, but it's definitely thinner on top than it normally is. I hate it, too!

[NicShaf]

Leigh, I asked my doc about the taper in CTX because I'd never really heard anyone else talk about it before, it sounded like everyone else just switched. He said that the taper wasn't required, but he has always found it to help in transition to a maintenance drug.

I see your point about him trying to decide if it is Wegs related or not, but I think what makes me uncomfortable is that he isn't communicating that with me. I am a very active participant in my treatment, and I expect my doctors to understand just telling me to do something because they said so isn't a good enough reason for me, I need to know the reason behind their decision. I think that is what's bothering me most. I know Wegs is uncertain and comes at you with a curve ball sometimes, but not knowing why I'm doing something just gets me....or even if he said, "if scenario A happens, we'll do this, and if scenario B happens, we'll do this" that would ease my mind a bit.

[delorisdoe]

I do know what you are saying. I am not active in my treatment but I do remember asking my doc way back when "how will I know if it is the pred reduction, the cytoxan reduction-i did reduce just much more quickly, like a week-or if it is the wegs creeping back"? he replied with a shrug of his shoulders.

thanks, that helps a lot.

[NicShaf]

I do know what you are saying. I am not active in my treatment but I do remember asking my doc way back when "how will I know if it is the pred reduction, the cytoxan reduction-i did reduce just much more quickly, like a week-or if it is the wegs creeping back"? he replied with a shrug of his shoulders.

thanks, that helps a lot.

You mentioned that he might be asking me to raise my Pred dose to rule out anything but Wegs activity; I hadn't thought of that before.

I'm not trying to say that anyone else is or isn't active in their treatment, I'm just trying to say that in my case, my doctor has always understood that I ask A LOT of quetsions, and he's aways been kind enough to be patient with me, and that is what I love about my Rheumy and Pulmonary docs. And I was surprised that when I went to my Rheumy with very specific questions, this time he didn't answer them as detailed as I wanted to hear.

[delorisdoe]

No worries it did not sound that way. Nicole as chris (female) will tell you I am the polar oposite to that and it is bad. I am quite sure I am the worst patient on this board. I envy you and others who so naturaly take charge of their care. It is a good thing. I have been sick with wegeners for 10++ years and no less about it than most. When I read what you and others write about taking charge of their own care I am jealous, in awe and inspired...flaunt it please...it gives me strength.

[Al]

You mentioned that he might be asking me to raise my Pred dose to rule out anything but Wegs activity; I hadn't thought of that before.

I'm not trying to say that anyone else is or isn't active in their treatment, I'm just trying to say that in my case, my doctor has always understood that I ask A LOT of quetsions, and he's aways been kind enough to be patient with me, and that is what I love about my Rheumy and Pulmonary docs. And I was surprised that when I went to my Rheumy with very specific questions, this time he didn't answer them as detailed as I wanted to hear.

Nicole, I know that weggies can be a real pain to doctors, but the fact is, the get paid well to sort things out with us. Any employee is going to consider his manager a nuisance--all he seems to want is for me to do stuff kind of thing. But when I take the job, I realize that I need to do the work. You are the doctor's employer--his meal ticket, at least in part. You are allowed to tell him that you are not satisfied with what he has done on the latest project. As his manager, you have the authority to ask him for clear explanations of his handling of the situation. Remember that you are the boss! You are hiring him,not the other way around!

Al

[NicShaf]

Thanks Al, that is a very good point and something I need to keep in mind.