Spoke with my Mayo doc

[Brooke]

My doctor at Mayo clinic called me back today. I told her what my pulmonologist here in my home town had recommended as far as my pred taper. My doctor here wants me to do 15mg one day and 10mg the next and alternate those doses for one month. Then go to 10mg for a month and then 5mg for a month. I wanted to let my Mayo doc know that this was going to be the plan and so I called her to let her know. I told her I didn't want to go back up to 15mg if I didn't have to.
I told Dr. Karina Keogh (mayo doc) that 5mg wasn't working because I was coughing so much more especially at night. She said that prednisone will help with post nasal drip and maybe that is why I am coughing more since I am tapering. She told me to elevate my bed, start prilosec 20mg, start using my symbicort inhaler and
do 10mg pred for two weeks then 7 1/2mg for two weeks then 5mg for two weeks and then 2 1/2mg for two weeks. I need to let her know how I am doing after the two weeks at 10mg.
She also said that I do not need an echocardiogram every year, she said my one last year was really good and that it is very rare for Wegener's to affect the heart. She said unless I have new symptoms such as chest pain, she wouldn't not do another one right now.
I see her in follow up on Sept 15th. I will do all blood work for Wegener's, urine test, breathing tests, ENT visit, and CT scans.
I hope she is right and it is just post nasal drip and acid reflux that I have.

[pberggren1]

Are you coughing up blood?

[Jack]

I'm not a great fan of the post nasal drip theory causing a cough. This was put forward in my own case untill my specialist pointed out that my nose had been much worse in the past with no sign of it causing a cough.

Acid reflux - I can't remember, are you taking Lansoprazole or similar to protect your stomach and cut down the acid?

Echocardiogram - my own specialist has a similar view to yours. I've had one, but there is no need to repeat unless there are any symptoms. However, they are very quick to run an ECG on me and I've had loads of those.

[Brooke]

Phil - No I am not coughing up blood.
Jack - I am not taking Lansoprazole, is that like prilosec? I am supposed to start taking that.

[Jack]

I think that it is a similar type of drug, but as I understand it Prilosec is an old drug that has now been superceeded by better medicines. Not sure about that though - try Googling them. ;)

[Sangye]

Brooke, Dr Keogh is a pulmy. Only a rheumy should be overseeing your Wegs treatment. I'm surprised she wouldn't make that clear to you. With the exception of my current urgent, short-term need for 40mg pred, none of my JHU docs would change my treatment or even make treatment recommendations. They consider that Dr Seo's territory.

Even though I've always had great pulmys, every single one has been unreliable in their assessment of my overall Wegs activity. Unless the lungs are actively hemorrhaging or forming large nodules, they seem to think things are progressing fine overall and that the disease is under control. It's the Wegs rheumy who sees the whole picture and all the risks.

That taper sounds ways too fast. Like Jack, I'm suspicious about the post-nasal drip theory.

For stomach protection I've used 40 mg protonix with success. I don't know how it compares to the other drugs, though.

As far as the echo, we each have to make our own decision. I'd like to know what the Wegs rheumys at Mayo would say about it.

[Brooke]

Sangye, thanks for the response - how are you doing??
I will try what Dr. Keogh says and see how I am feeling in two weeks.
Do you think I should ask her to refer me to a wegener's specialist at mayo? I think she is pretty smart, she has done lots of research and written research articles - if you look at the mayo website and search her name (I am sure you already did since you know she is a pulmonologist), you can click on different research articles she has written.
I will be seeing her September 15th for follow up.

[Sangye]

Do you think I should ask her to refer me to a wegener's specialist at mayo?

Yes. She should be on your team, but not coordinating your care, even though she is certainly an excellent doctor.