Pred question

[Tom]

I tapered much more slowly than 7 days, I went from 60 to 50 to 40 to 30 to 20 to 10 but went down a step every month, not every 7 days.

That would have been ideal also but I could barely get below 50 and I start having problems. Like I said the Drs knew this wasnt going to be easy for me from the start. In part because I had a beat up immune system from stage 4 cancer treatment. and the they had to surpress what I had. Ive predisone in the past but only a 5 or 10 mg taper dose for 7 days and when they told me what I would be taking I about fell over. I believe they are thinking that if they can get the breating under control then I will settle in and can taper, But the COPD is fighting me too. Outside of the WEGS, the pulmo wants to get the lungs stabilized. That would be a big help for me right now and the the way they treat COPD is with steroids also.Therein lies my dilema. I got hit with both at the same time. I went in for the breating problem and within a coupleof months I am dx'd with Wegs and it had already affected the lungs and kidneys as well as the sinus's.

[marta]

Hey Tom,

my taper was crazy slow compared to yours. My doc worked at Mayo and with some of the docs who are often mentioned on here and she prides herself in being very conservative with the taper. I'm both unhappy and I guess happy with that. I started this whole gig at 60mg, like you, at the beginning of May 2010. I'm now at 7mg - the lowest I've been yet. I went very slow ( a little faster at first, but then I had a big flare in November 2010) and had to start from scratch. Since 20mg, I've been going down 1mg per month, and frankly I think despite my hate-on for pred, it's been relatively uneventful. I've read horror stories about how the wean can hit you, and other than some minor aches and pains, I've been pretty lucky.

I was just talking to a Weggie friend in Edmonton and her doc is weaning her super fast. I was actually worried about her when she was telling me her wean regime. Also happened with my dad (who they put on pred for his kidneys). He went into adrenal crisis, which can kill you. I told him what my opinion was and he listened and he went from having blood pressure that was something like low 80's over low 50's - it was scarry - I have never seen him look so bad in my life - to functioning perfectly normal. He started what I suggested for a wean, went to his NEW nephrologist and she agreed. (I've become a doctor since all of this Wegener's crazyness started). He's now on one day at .5mg and one day nothing - alternating and he's doing great (although it's probably more than a half a year from when his old doc wanted him to be off it). So I think the wean is very important and very individual. Follow your gut. Question your docs. You're the best diagnostic tool there is for your own body.

I hope my ranting hasn't confused the issue any further.

LUCK!!!!

[pberggren1]

Hey Tom,

my taper was crazy slow compared to yours. My doc worked at Mayo and with some of the docs who are often mentioned on here and she prides herself in being very conservative with the taper. I'm both unhappy and I guess happy with that. I started this whole gig at 60mg, like you, at the beginning of May 2010. I'm now at 7mg - the lowest I've been yet. I went very slow ( a little faster at first, but then I had a big flare in November 2010) and had to start from scratch. Since 20mg, I've been going down 1mg per month, and frankly I think despite my hate-on for pred, it's been relatively uneventful. I've read horror stories about how the wean can hit you, and other than some minor aches and pains, I've been pretty lucky.

I was just talking to a Weggie friend in Edmonton and her doc is weaning her super fast. I was actually worried about her when she was telling me her wean regime. Also happened with my dad (who they put on pred for his kidneys). He went into adrenal crisis, which can kill you. I told him what my opinion was and he listened and he went from having blood pressure that was something like low 80's over low 50's - it was scarry - I have never seen him look so bad in my life - to functioning perfectly normal. He started what I suggested for a wean, went to his NEW nephrologist and she agreed. (I've become a doctor since all of this Wegener's crazyness started). He's now on one day at .5mg and one day nothing - alternating and he's doing great (although it's probably more than a half a year from when his old doc wanted him to be off it). So I think the wean is very important and very individual. Follow your gut. Question your docs. You're the best diagnostic tool there is for your own body.

I hope my ranting hasn't confused the issue any further.

LUCK!!!!

How fast was your friend's taper Marta?

[marta]

Hey Phil,

It was 10mg every two weeks, then something like 5mg every week or two once she got under 20. I could have it wrong, and she can correct me if I'm wrong - she's a member here as well - but I was just blown away at the speed. Especially under 20 and under 10mg. It was way too freaky. She's also still having issues with active disease I think which warrants a much slower wean and a reasses of the chemo in use. She (my friend) told me that her doc consults with my doc, but I can't see it happening since they're on such opposing pages when it comes to that - they work out of the same clinic though. Once the vasculitis clinic opens up in January, she can jump ship.... ha ha - you reading this my Edmonton friend?

[Al]

...Also happened with my dad (who they put on pred for his kidneys). He went into adrenal crisis, which can kill you. I told him what my opinion was and he listened and he went from having blood pressure that was something like low 80's over low 50's - it was scarry - I have never seen him look so bad in my life - to functioning perfectly normal. He started what I suggested for a wean, went to his NEW nephrologist and she agreed. (I've become a doctor since all of this Wegener's crazyness started)....

Do you mind me asking, Dr. Marta, what was your Pop's kidney condition that warranted the pred? (I mean, does he mind my asking, since it would be his story to tell.) Pred is not a universal problem solver, but when we need it, we need it.

Al

[pberggren1]

Hey Phil,

It was 10mg every two weeks, then something like 5mg every week or two once she got under 20. I could have it wrong, and she can correct me if I'm wrong - she's a member here as well - but I was just blown away at the speed. Especially under 20 and under 10mg. It was way too freaky. She's also still having issues with active disease I think which warrants a much slower wean and a reasses of the chemo in use. She (my friend) told me that her doc consults with my doc, but I can't see it happening since they're on such opposing pages when it comes to that - they work out of the same clinic though. Once the vasculitis clinic opens up in January, she can jump ship.... ha ha - you reading this my Edmonton friend?

Doesn't sound fast to me. The last few flares I tapered from 60 after one month at 5 per week until down to 10. Then tapered more slowly, like 1 mg per month or 2 mg every 4 weeks until down to 4, then taper 1 mg per month.

Sounds like her doc does not know Wegs and does not consult with the Kahuna in her own clinic. Not good at all.

[Tom]

The original plan was to taper me sooner and more gradual but I guess my concern is that it seems like the affected organs seem to function better if Im on the higher dose of predisone but I lose ground at each taper with minimal recovery when they try to compensate, respitory specifically. I know initially when I first went on the pred. I was using spiriva and advair with reasonably good results. Of course my situation is changing all the time it seems as it is with others Im sure. This is a strange disease in that it seems to have a mind of its own. I might also be one of those that dont respond to the treatment very well and I do feel I have had this for awhile before the big flare that led to the dx. Longer than 2 years and maybe as much as 5 or 6 years. I have an appointment today and I will bring up my concerns about the predisone again but dispite my efforts to avoid sodium, I have some edema going on so I started my Lasix as needed again. I'm hoping that I can continue to taper even with some difficulty and hope to find a happy spot somewhere around 10 mg. I can always turn up the o2 and maybe the Advair and Spiriva will sustain and I might try pulmo rehab if the insurance will pay for another session and maybe a low dose of predisone will help with the kidneys.

[Al]

This is a strange disease in that it seems to have a mind of its own....

You are very right about that, Tom. The disease does have a mind of its own. I'm thinking that perhaps this is more literal than it seems. The immune system is an immensely complicated organ--easily as complex as the brain itself. In fact, I could make the argument that the brain is a specialized part of the immune system, which would not be an incorrect way to look at it. In any case, there is a lot going on there, too much to guarantee results from some piddly drug!

About the edema: It isn't just a matter of sodium. It is a problem with stressed kidneys not knowing where to put the excess liquid. How much Lasix are you taking?

Al

[reb876]

Hi Everyone, Happy New year, hope its all good,

Only been on the Pred for about 1 month, at 60mg now, very interesting reading about the tapering I will be very proactive about that with the doc when they start to taper me off it, My question is there anything you can do for the pred shakes, I have them real bad today, I assume its the pred, I am still on chemo tablets, so it might be a mixture, could be withdrawals from the booze, after all I am an Aussie piss head lol.

Take Care

Steve

[Sangye]

There's nothing you can do about the pred shakes. They'll go away as you taper--probably when you get below 40 mg. Glad you're not drinking! That puts a major load on the liver, along with all the meds we take. (Every drug is stressful to the liver, whether the label says it or not)