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

[NicShaf]

Hi Everyone, I hope I can keep this short...
About 4 weeks ago, my ANCA's came back slightly elevated. They were <1:20 for about 6 months, and they went up to 1:40 at the beginning of November.
I had a cold at the time too, so I had a routine chest x-ray, and everything looked good. I had no other symptoms to speak of.
At the same time, my Rheumy recommended I go down to 25mg of Cytoxan. We have been tapering 25mg per month for about 3 months at this point, hoping to switch to Immuran at the beginning of December (at next week's appointment).
I didn't feel comfortable going this low on my Immunosuppressant, I was told by my Rheumy that it is no longer therapeutic below 50mg, but against my better judgment I listened to him because he said it was only for 4 weeks, and he felt it was the best thing to do.
Starting last week (week 3 of 25mg CTX dose) I was having pain all over. It only lasted Monday, and then went away on its own. Rheumy told me to increase Pred to 5mg, but since it didn’t' come back the next day, I didn't change any doses.
The pain came back this week (Monday again), so I upped my Pred. It got a little better, but still had a little pain Tues and Wed even on the higher dose of Pred.
I emailed him yesterday, and asked if he wanted to me to hold out until I see him next Tuesday, or if he had another recommendation...I wanted a game plan for my treatment, what his thoughts were. I also explained in my email that I didn't feel comfortable being on such a low dose of Cytoxan and relying on the Pred to control disease activity. His succinct response was "go to 10mg of Pred".
Now I'm upset. Is he not even reading my email? Is a nurse reading it to him, and not translating all the information I included? That doesn't seem like a response he would normally give, he is usually long winded when I ask any questions.
What are your thoughts/ experience? I wasn't expecting to flare like this while still undergoing treatment...I'm very lost.
Sorry I couldn't keep it shorter...thanks for reading:)

[NicShaf]

Oh, I should probably also mention I was at 3mg of Pred before I went to 5mg a couple days ago.

[Dirty Don]

I would ask your Rheumy exactly the same questions you have at the end here. Or, get a new rheumy...? There are so many variations and symptomatic behaviors with WG that one must keep aware and take every angle presented to cope with WG. You know that...now, can you get the assistance necessary? Hope so. Don't know where you live Nicole, but it would be worth your while to look into WG specialists nearest you. I work with Mayo, and even my internist (non Mayo) has trouble communicating with them at times and he's closer to them than I am. Need to go to the best you can find...I wouldn't fool with fluctuating symptoms...get better soon!

[NicShaf]

Thanks Don.
I'm in Southern California. A specialist is kinda far from here, but I have considered it many times. I normally don't have issues with my Rheumy, he is usually very thorough and attentive. That's what has thrown me off a bit.

[Sangye]

Nicole, it's hard to say if your doc is just blowing you off or if he is lost. Too many regular rheumys use pred to control symptoms when they really need to take a better look at the immunosuppressant. I think you need to have a conversation with him to clarify what's going on.

Have you ever emailed him before? Dr Seo gives long explanations in person but sends very brief answers in emails.

[ScreaminMeanie]

I think at this point I'd wait to talk to him in person. If it were me, I would bring up treatment with Rituxan. It seems to me like your WG is still active, if you're flaring every time you decrease pred. Ctx can only be used for so long before the possible damage it causes outweighs the benefits. Good luck to you, and keep us posted!

[NicShaf]

Yes, I email him quite often, and he is usually brief in him emails. He is also "old school" and not tech savy, that could be the reason for his 4 word answer.
I just feel really uncomfortable upping my Pred so much right before we were going to reevaluate my immunosuppresant situation. it feels like a step backwards and in the wrong direction.

I think what I want to do is stay where I'm at for the next few days and montior my symptoms, then discuss everything with him Tuesday morning at my appointment.
I also go in for more blood work today, so I guess I'll see if my bloodwork has changed at all...

[NicShaf]

I think at this point I'd wait to talk to him in person. If it were me, I would bring up treatment with Rituxan. It seems to me like your WG is still active, if you're flaring every time you decrease pred. Ctx can only be used for so long before the possible damage it causes outweighs the benefits. Good luck to you, and keep us posted!

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:)

[Dirty Don]

FYI Nicole...you are about 6 hours then from PHX Mayo Clinic & Hospital...people come from all over the world...my rheumy (a WG specialst) is actually head of a team with and ENT and pulminologist involved on all decisions. Once contact is established with the docs of Mayo, then your rheumy in SoCal can communicate with them...albeit, it may be a bit slower as Mayo tends to be 'self involved' in what they do. But, once proper meds are established then it's just a matter of monitoring...either with your current rheumy or in AZ. Just a thought, you're not that far away...

[NicShaf]

FYI Nicole...you are about 6 hours then from PHX Mayo Clinic & Hospital...people come from all over the world...my rheumy (a WG specialst) is actually head of a team with and ENT and pulminologist involved on all decisions. Once contact is established with the docs of Mayo, then your rheumy in SoCal can communicate with them...albeit, it may be a bit slower as Mayo tends to be 'self involved' in what they do. But, once proper meds are established then it's just a matter of monitoring...either with your current rheumy or in AZ. Just a thought, you're not that far away...

Thanks Don, I actually thought the closest specialist to me was Utah, which is about twice the distance of Pheonix. I'm gonna look into Mayo.

[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.

[delorisdoe]

I just wanted to add that Nicole this may be off topic but wow you are beautiful.

that is all

[NicShaf]

Leigh, thanks, you're a sweetheart...you can go off topic any time you want:) LOL

[Michael Dean]

Good luck Nicole,
I live in so cal also (long Beach) and have had good luck with my Rhumy, I was diagnosed in April and in remission since Sept.
She also had another Rhumy fill in for her in July, I was very impressed with him as well. From our discussion it sounds like they both have experiance with weg patients.
I think they're are some excellent Rhumy's in our area that have worked with wegs before. Mine works out of Greater Newport Physicians.

[NicShaf]

Mike, I agree, I think their are some great Rheumy's in our area. I'm with Kaiser, and see my doctor out of the Irvine/ Sand Canyon office off the 405 fwy. I usually like him, he just got on my bad side this week:) He's been treating Wegs patients since the year I was born, so I trust his judgement for the most part.

Great to hear that you're in remission, that is awesome!