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.