PDA

View Full Version : Prednisone Taper



Daggar
04-02-2011, 07:07 AM
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
04-02-2011, 07:20 AM
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
04-02-2011, 01:51 PM
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
04-03-2011, 02:32 AM
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
04-03-2011, 03:01 AM
Daggar, in addition to the lab work they use the BVAS (http://rarediseasesnetwork.epi.usf.edu/vcrc/documents/BVAS%20Assessment%20Training%20Manual.pdf) 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
04-03-2011, 03:06 AM
Is that the form that they fill out during each clinic? A lot of symptom-related inquiries as well as the physical exam.

Sangye
04-03-2011, 03:11 AM
I don't know-- look at the form in the link to see.

Daggar
04-03-2011, 03:20 AM
Yes -- that's the one....

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

Sangye
04-03-2011, 03:33 AM
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
04-05-2011, 04:49 AM
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.

Jules
04-05-2011, 05:25 AM
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
04-05-2011, 05:37 AM
An Ace Inhibitor is fairly standard practice if you have kidney involvement.

Psyborg
05-13-2011, 02:43 AM
So can I ask a taper related question? (I guess I just did :p)...

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
05-13-2011, 02:57 AM
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 :thumbsup: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!?

Psyborg
05-13-2011, 03:03 AM
It's a bit faster than what I did. My doctor reduce 2.5 every other week to 15 mg, then I went to 2.5 a month to 10, from there it's been 1 mg a month.

Sangye
05-13-2011, 03:30 AM
Bob and Jules, what I've learned (the hard way, oy!) about tapering pred below 10 mg is that you have to be brutally honest with yourself about how you're doing. It helps to keep a daily journal of symptoms and drug dosages. If not, you can easily go into denial about what is happening and delude yourself into thinking the taper is going fine or that you can go faster. Believe me, I deluded myself into a real mess. More than once. :blushing:

Having said that, you can often go faster at times and then slow down again. After a bad taper last year, I had to taper very slowly from 20mg to 10mg, but for some reason I was able to drop from 10mg to 7.5mg all at once. Then it was very slow again. Tapering below 5mg generally takes longer because the adrenals have to start coming back online. Don't rush it at that point or you might have to go way back up on the pred to recover. I also did that. :blushing:

It also helps that I have--through experience with good and bad tapers-- really learned what "too much" pred and "too little" pred feels like. One big clue that you are too low is sudden afternoon sleepiness. If that happens, increase back up to the last dose and hang out longer. Also, if Wegs symptoms start returning or stable ones are worsening, you have to increase to the last dose.

You have to sneak away from the Wegs dog or he will chase you down the street. :wink1:

drz
05-13-2011, 09:51 AM
[QUOTE=Sangye;40254

You have to sneak away from the Wegs dog or he will chase you down the street. :wink1:[/QUOTE]

It is hard to hear the WOOF WOOF though when the dog took your hearing.:wink1:

My rheumatologist told me he will try get me off the prednisone but given my history he is not optimistic that it can happen. The plan is to keep dropping it 1/2 mg every two weeks to see how far down I can go without troubles, I am at 7 1/2 now after about a year of slow decreases.

How many people here have been able to get off entirely. I know for most people this depends upon where you start and how long you have been on it and maybe the severity or persistence of your GPA/WGs.

drz
05-13-2011, 09:53 AM
An Ace Inhibitor is fairly standard practice if you have kidney involvement.

I had been on one for years due to damage from diabetes but they took me off when they diagnosed the WEGS. I never asked my nephrologist why, but that seems a good question now.

Sangye
05-13-2011, 09:59 AM
It is hard to hear the WOOF WOOF though when the dog took your hearing.:wink1:
Yeah, that's true! Maybe you'll have to wear thin-soled shoes so you can feel the ground vibrating as he gallops towards you. He's a big dog, but sneaky. Keep an eye on the shrubs.

Daggar
05-13-2011, 10:32 AM
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 :thumbsup: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!?

Hey Jules, good to hear you're doing well. We've run into a bit of a tug-of-war between Rheumy and Nephrologist of late. Kind of funny because at first the Nephrologist was the one rushing to get the disease under control and telling us it will be a long-term deal, however, he is amazed how silent the WG has been since treatment and feels the heavy dose of iv methypred each month may of become overkill. The Rheumy appears to be playing it by the book though - 6 months no matter what. They've got her down to 17.5 mg daily for the oral pred but still want to do the last iv treatment June 2nd. We also have a clinic scheduled later in May where everyone is to sit down and discuss the switch from ctx to imuran/aza. I'm to the point that after watching Holly suffer with the side effects from the high dose pred I may become somewhat of a _ _ _ _ disturber at this clinic to see if we can get these doctors to feel what it's like to have a little "pred rage"!! lol

Just kidding... although it is very hard to sit by and watch how the prednisone dosages have changed a 14-15 year old while not knowing if they are truly necessary.

As for the taper on your end - hope it goes well but be careful!!

vdub
05-13-2011, 10:51 AM
How many people here have been able to get off entirely.

I haven't been on pred since I was dx'ed. Doc at SLC thought it might not be necessary because I'm on Cortef (30mg/day) as a cortisone replacement forever. I hope that is the case and it stays like that. I had good luck with pred for the short times that I was on it. But, I sure don't like to hear you guys talk about it. Not pleasant stuff for long periods....

Knowing what I know now, if the docs put me on high doses of pred, I think I'd be tempted to wash it down with high doses of Jack Daniels....

pberggren1
05-13-2011, 01:01 PM
I have been off pred entirely twice. Once in 2004 and from 2005 to 2007. I have been on it steady since November 2007. If things go good I should be down to 10mg by middle of June. I am at 30mg right now.

Jules
05-14-2011, 02:15 AM
Oooh, that's a thought . . . how will I get away with 'losing it' with my teenage boys when I can't get in their rooms for the mess, when I haven't got the 'pred rage' excuse? :ohmy: Anyone heard of AZA rage? Please tell me it exists!:sneaky:

delorisdoe
05-14-2011, 02:39 AM
i have spent most of the last 8 years of my life off of prednisone.

Psyborg
05-14-2011, 02:43 AM
I did decide to stay where I was at. Really want off, but risking a flair is insane at this point ;)