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.

[Jules]

Will be interesting to follow Holly's progress Daggar. Similarly was on 50/60mg oral pred at beginning of 'adventure' in December - have been slowly reducing and lowered today to 15mg. Also at stage of hopefully switching from ctx to imuran/mtx (rheumatologist and nephrologist still not in agreement!) in next few weeks if all goes according to plan.

I think I'm looking forward to the switch - ctx has played havoc with my lymphocite count! However, just when you think you have a 'handle' on everything - I've been put on ACE Inhibitor as of today . . . that was a new one!!!!

Tell Holly to hang on it there . . . she's been amazing!
Jules

[Jack]

An Ace Inhibitor is fairly standard practice if you have kidney involvement.

[Psyborg]

So can I ask a taper related question? (I guess I just did )...

I've been tapering 1mg a month, and that is starting to feel way too slow at this point. i'm down a few days after taper then I stablize...is it unreasonable to go a bit faster if I feel fine with it? I was thinking like every 2 or 3 weeks if I felt stable enough. I guess I'm antsy to get off the Pred...

[Jules]

I'm angsty to get off the pred too . . . and so it would seem at last is my nephrologist! Am switiching this week from Ctx to Aza and have been dropped from 15mg of pred to 10mg for two weeks, then have to drop to 7.5mg for two weeks with the target being to have me down to 5mg in 4 weeks! Sounds great to me, but reading other peoples' expericences does it sounds a little fast to anyone!?