Prednisone taper

[stikker]

I am currently debating with Nephrologist regargding presdnisone taper.

Wegeners doc that I see Quarterly sent a letter saying, that I have signs of toxicity. He wants me down to 20 mg in a month( down from 50 mg.)
Nephr. says she will make decision based on my urine testing.
Weg Doc says urine may get worse even under effective treatment.
I feel like I am running put of fight. I want to do what weg doc says. Can I make them do it? I don’t want to drive the 1.25 hours to boston weekly but I will if I have to.
How was everone else tapered? Is 20 in a month too fast? What does anyone think?
stikker1

[Sangye]

Follow your Wegs doc. (Who is it again? I forgot)

I think it's best to get to Boston at least until this gets sorted out. You shouldn't have to go weekly, but if you do it's well worth it. They will keep you safe and alive, able to fight.

What did s/he mean by signs of toxicity?

[elephant]

Yes agree with Sangye. I was wondering the same thing toxicity. I have heard prednisone can be hard on the kidneys. So was wondering if that was the case? Or liver?

[stikker]

I am not sure what he meant by toxicity but I feel horrible so it made me feel justified. Kidney and lung are my problem areas.
I see Dr Merkel at Boston Medical Center. I think I will call him tomorrow and switch to him. I can't fight every day. I am worn out.
Thanks for your input. I knew you guys would clear it up.
stikker

[Sangye]

That's right--Dr Merkel. You're safe in his care. He should be overseeing your treatment and advising the other specialists, not the other way around. That's routine-- rheumy in charge.

I know what it's like to be overwhelmed and ready to give up. Dr Merkel will get things under control and you'll be on the other side of this very soon. Take care, Stikker. You'll be okay.

[JanW]

I've seen Merkel speak on the VF website and he's definitely knowledgeable and also seems like a very nice guy. Sangye is right -- the rheumy is the team leader, as my rheumy made very clear to me, and that's just the way it has to work with a rare disease like this. You've got one of the top guys in the business, that's for sure, and the neph should just be following his lead and respecting Merkel's advice. There should be no argument, or, if there is, it should be between the two docs, without you in the middle...but I guarantee you that your neph isn't going to know as much about this disease as Merkel. I am just in the earlier days of treatment (one surgery, no therapeutic dose of meds as of yet) and I'm at the rheumy's every other week (granted it takes me only about 45 minutes to get there, but it's a 45 minute visit, not including bloods each time)...sometimes it's just what we have to do to fight this disease.

[pberggren1]

Well said Jan!

[Doug]

Me, too, stikker. You know how wearing it is to deal with occasional communication issues between doctors. That's why you need to get it across to your nephrologist that WG isn't a kid's game, that while s/he no doubt is seriously qualified to deal with most diseases of the kidneys, WG requires a rheumatologist in charge of the overall treatment because of the rapid changes and potential mortality that comes with it when treatments are too far off base. (Please and thank you! )

Note that you have a world-class doctor (rheumatologist) caring for your WG, and that you'd like her/him (Ithe nephrologist) to gain WG experience by reviewing her/his findings and judgements with this world-class WG doctor before talking with you about it. Note that the stress having discordant information on what needs to be done for your WG is wearing you down. Note that if she/he is unable to defer to the rheumatologist's knowledge of WG treatment and your particular variations on the disease, you have no course of action but to find a doctor who will work with the world-class WG doctor.

You might even give her/him the link to the Vasculitis Foundation and your rheumatologist's cellphone telephone number, e-mail address, any other means of communication if you can (and with his permission, as a courtesy to him).

[Jack]

I feel so lucky that both my Nephrologist and Rheumatologist jointly headed a world class Vasculitis research group. I think that must be about as good as it gets.

[stikker]

Me, too, stikker. You know how wearing it is to deal with occasional communication issues between doctors. That's why you need to get it across to your nephrologist that WG isn't a kid's game, that while s/he no doubt is seriously qualified to deal with most diseases of the kidneys, WG requires a rheumatologist in charge of the overall treatment because of the rapid changes and potential mortality that comes with it when treatments are too far off base. (Please and thank you! )

Note that you have a world-class doctor (rheumatologist) caring for your WG, and that you'd like her/him (Ithe nephrologist) to gain WG experience by reviewing her/his findings and judgements with this world-class WG doctor before talking with you about it. Note that the stress having discordant information on what needs to be done for your WG is wearing you down. Note that if she/he is unable to defer to the rheumatologist's knowledge of WG treatment and your particular variations on the disease, you have no course of action but to find a doctor who will work with the world-class WG doctor.

You might even give her/him the link to the Vasculitis Foundation and your rheumatologist's cellphone telephone number, e-mail address, any other means of communication if you can (and with his permission, as a courtesy to him).

Wow Doug. Would you come on my appointment with me??? I printed out you e mail and I'll review before I go in. It said everything I need to say!!!! Thank you