Prednisone Taper

[Daggar]

I'm not sure how this works -- Holly was originally on 50mg of oral pred at the time of her release from the hospital in November. They started to taper a bit after 1½ months. She got down to 35mg before they changed the plans and added a monthly iv methylpred treatment while holding with the oral dose as well. They explained that it was a precautionary move at the time to see if they could further combat any possibility of inflammation and the iv dose would help to safely reduce the oral dosage. The kidney function has increased since the two iv treatments so I'm not questioning that so much.

Holly is now down to 25mg of oral and the plan is to give her two more monthly iv treatments (April/May) which will see her lower the oral to 15mg. They will hold at that for a bit to see how she reacts.

Does this sound reasonable? Has anyone heard that the iv treatment allows them to safely reduce oral?

Also -- do most flare-ups occur when switching from cytoxan to the maintenance drugs (imuran/mtx)?

[delorisdoe]

My brother has a disease that when he first flared they had him on an industrial amount of iv prednisone. He was able to stop it quickly and was told that it was because it was Iv. Im thinking this makes sense to me because oral cytoxan is more toxic than iv cytoxan i think because long term use is worse for you than a quick burst. of course I really dont have any idea of the reason why but this is what my brother was told. I went from cytoxan to nothing.
Tapering from prednisone made me feel like i was flaring but i was not. truth be told i was young then and sick of it all and decided that 20 mg every other day of prednisone followed by 0mg two weeks later was the way to go. I did survive it but i would not do it again. lol.

ps when i read my replies i wonder if perhaps i have multiple personalities as i jump all over the place. I have alot to say.

leigh.

[Sangye]

Daggar, Dr Seo told me they treat kids with Wegs differently than adults. They use a lot more pred. I don't think you can extrapolate much from most of the members on here.

As far as when flares occur, I don't know if there is data on that. From reading posts here it seems they occur quite randomly for the most part. Some people do have trouble transitioning to a milder drug. It makes me wonder if remission was truly induced first. I know it wasn't in my case.

[Daggar]

Holly's been amazingly tough up to this point but as spring/summer is nearing she is getting down about what the steroids have done to her. It's very hard to keep her thinking 3-4 months ahead and not dwelling on the day-to-day. It's tough to watch an optimistic kid start to have doubts....

Hopefully they don't need to continue the iv treatment into June.... she has levelled off in all tests so I don't think it can improve anything other than making it safer to taper the oral dosage if that is the case.

"Remission induced"... that's a tough one! How do they determine that.... by the PR3 count... negative ANCA... 0 CRP.... can't all of those jump if not on the treatment method that controlled them in the first place? It'll be a scary time when they start to transition her.

[Sangye]

Daggar, in addition to the lab work they use the BVAS assessment to determine disease activity. BVAS is the rating scale they use in research studies to determine if remission has been induced, and it's the scale Wegs specialists use to follow patients. Lab work alone is not sufficient to determine that. (My lab work looks great even when the Wegs is obviously active.)

[Daggar]

Is that the form that they fill out during each clinic? A lot of symptom-related inquiries as well as the physical exam.

[Sangye]

I don't know-- look at the form in the link to see.

[Daggar]

Yes -- that's the one....

They showed that to me back in February after they said they believed the WG was in remission.

[Sangye]

If I have symptoms and start to worry and wonder if it's Wegs, I take a look at the BVAS. It's been a good tool for me to know when to call Dr Seo or another doc on my team and when things are just fine.

[JanW]

Daggar - please keep in mind as well that lab work is only one piece of the puzzle. My PR3 for instance, has always been in around 60-68 (at diagnosis in the 90s) whereas many people here have extremely low levels plus negative ANCA (mine has NEVER been negative) and I have been considered in remission for greater than six months and am currently reducing my meds. Some docs say it is the absence of most symptoms, some say all, some use other metrics. PR3 and ANCA are not considered great indicators for most people beyond initial dx.