Research! The Assessment of Prednisone in Remission Trial (TAPIR)

[lag713]

www.TAPIRTrial.org (http://www.tapirtrial.org/)
https://www.youtube.com/watch?v=WQN-fJH8oswz



What we are studying:



The TAPIR Trial is helping us learn more about how to manage the care of people affected by granulomatosis with polyangiitis (Wegener's, GPA) who are in remission.



We would like to learn more about whether patients with GPA are better off being maintained on low-dose prednisone or attempting to come off prednisone altogether when they are in remission.


Who can participate in TAPIR?



You may be eligible to participate if:



You have been diagnosed with granulomatosis with polyangiitis (GPA, also known as Wegener's granulomatosis)
You have needed to take 20 mg or more of prednisone each day at some point in the last 12 months
You are currently taking prednisone (Please note that you may be on other medications for your GPA besides prednisone and still participate in the TAPIR trial)
You are at least 18 years of age
Your physician is based in the US or you can travel to a VCRC Clinical Center


*Other conditions may apply



How to join the TAPIR trial:


There are 2 ways you can join the TAPIR trial.



*JOIN TAPIR ONLINE*


You do not have to live near a clinical center to join! You can join online and continue to see your own doctor. Visit www.TAPIRTrial.org (http://www.tapirtrial.org/)

[lag713]

I'm ineligible but I thought there might be some interest from the forum.

[renidrag]

I am too. Off prednisone for way too long.'
Dale

[rebekah]

I got an email for it today and wanted to take part in it, but after reading more about it I'm not eligible either. :( I'm taking 35mg of pred, a lot more than 6-10mg. I'll definitely keep an eye out for future emails about studies that are going on.

[Alysia]

just saw this one on fb. thanks Jana :thumbup:

https://scontent-a-fra.xx.fbcdn.net/hphotos-frc3/t1.0-9/10153299_621453114600720_890711709159781385_n.jpg

[drz]

I'm ineligible but I thought there might be some interest from the forum.

I wonder if this isn't also being addressed some what in the longitudinal study on treating GPA. I know they have a list of my meds and do lab work every time to assess things along with several clinical questionnaires. I am continuing on a low maintenance dose of 5 mg and 175 mg AZA too because it is thought it might help reduce risk of flares or relapse.

[Debbie C]

It will be interesting what they conclude.Since all the drs. say you need to be on some sort of maintence drug

[MCC]

It will be interesting what they conclude.Since all the drs. say you need to be on some sort of maintence drug

They don't all say that. Sure there are quite a few who are entirely off meds.

[drz]

They don't all say that. Sure there are quite a few who are entirely off meds.

One study indicated 20% can get drug free and stay in remission for at least three years. More research will help clarify who is most likely to do this and what approach is most effective to do so. Right now it is a try taper off and see what happens method.

[Alysia]

Right now it is a try taper off and see what happens method.

I don't think I will ever dare to try taper pred again, after last time, when I tried to reduce from 5mg to 4 mg and got the worse headaches in my life :sad:

[Debbie C]

I always take my pred (5 Mg. ) in the morning with breakfast but this morning I forgot all about it and I was busy doing things all day. It wasn't until 5:30 when I was to take a different pill that I noticed it. But I didn't have any problems all day until I noticed I didn't take it and I started feeling shaky. Wonder if it is just mind over matter. I was going to try not to take it since I went all day but ended up taking it anyway. Going to try this tomorrow and see if I can go all day this time

[Alysia]

I always take my pred (5 Mg. ) in the morning with breakfast but this morning I forgot all about it and I was busy doing things all day. It wasn't until 5:30 when I was to take a different pill that I noticed it. But I didn't have any problems all day until I noticed I didn't take it and I started feeling shaky. Wonder if it is just mind over matter. I was going to try not to take it since I went all day but ended up taking it anyway. Going to try this tomorrow and see if I can go all day this time

be careful. you don't feel so much of the weaning on the first day. but a bit later.... I wouldn't try it.... at least not this way..... maybe trying to taper down 0.5 every couple of days... not sure.... if any....
anyway, good luck.

[LisaT]

I was trying to go from 10 mg to 5 and my headaches got way worse... My rheumatologist had suggested I go down to 5, then right off without a taper. It doesn't seem like good advice to me given how crummy the drop made me feel. I told him at my appointment earlier this week that I have been fiddling with it, sometimes taking 10 when I feel I need more (did this yesterday). He said to 'keep it at that' until chest ct results. Now I realize I'm not sure whether he meant, keep it at 5 mg, or keep fiddling with it? Either way, I think an abrupt drop or stopping altogether could lead to a monumental crash, which wouldn't be good. I have had those rare energetic days and thought hey, maybe I'm better and everything will go back to normal and I can stop taking all these medications. That would be lovely... But the energy doesn't ever seem to last to the next day. So, I try to take advantage of it without overdoing it and wait for a good string of energetic days before making any major changes. I think that life's demands on my energy almost always outweigh what's in the energy bank... :unsure:

[Alysia]

Lisa, you can't drop from 10 to 5. it must be gradually: 10, 9, 8 , 7, 6, 5. each doze at least 2 weeks and to see if you can bear it.

[LisaT]

That's what I thought! He says no so I'm trying to ignore him and do it my way but only have 5mg pills. I'll talk to my pharmacist, maybe he can give me some 1 mg.

[Dirty Don]

A pill cutter or a sharp knife with a steady hand works well. The pills are not perfect, but the drugs are usually distributed pretty well within the compound, so don't worry about too little or too much.

[drz]

A pill cutter or a sharp knife with a steady hand works well. The pills are not perfect, but the drugs are usually distributed pretty well within the compound, so don't worry about too little or too much.

At one time when tapering i was cutting 1 mg pills into four pieces and going down 1/4 mg every couple weeks.

[MikeG-2012]

My taper schedule is
10 mg on odd days 7.5 on even days for two weeks,
7.5 for two weeks
7.5 on odd days and 5 on even days for two weeks
5 for two weeks -- Dr appointment.

So taper schedules vary from doc to doc.

[MCC]

The taper thing is different for everyone and every doctor. Mine was 10 - 7.5 - 5 - 0.
I had no problem going from 5 to 0.

IGNORE ^ got it wrong :flapper:

[Debbie C]

The taper thing is different for everyone and every doctor. Mine was 10 - 7.5 - 5 - 0.
I had no problem going from 5 to 0.

How long were you on the pred before you went off completely ?

[MCC]

I cant remember now sorry Debra, quite a while. I was on medication for two years in total, so the prednisone must have been quite some time of that. I started on 60mg.

edit: i looked back on past posts and it was 18 months...AND I got it wrong doh! It was 10-7.5- 5 but then wrong. I have the worse memory these days very sorry. According to past posts I went 5mg and then down by 1mg every 3 weeks until finished.

[Bing505z]

Here is how I dropped the Pred':

- Jan 2014.... Started with a sinus infection
- Feb 2014.... Hospitalization lead to diagnosis and placed on 80mg/day of Pred' and 20mg/day of CYC
- Late Feb 2014.... Found the right Doc' and taken off 20mg/day of CYC and Pred' reduced to 60mg/day
- First week of March.... First Rituxan treatment and Pred' reduced to 50mg/day
- Second week of March.... Second treatment of Rituxan and Pred' reduced to 40mg/day
- Third week of March.... Third treatment of Rituxan and Pred' reduced to 30mg/day
- Fourth week of March.... Final treatment of Rituxan and Pred' reduced to 20mg/day
- First week of April.... Pred' reduced to 10mg/day
- Second week of April.... Pred’ reduced to 5mg/day
- Third week of April.... Pred' reduced to 2.5mg/day
- Fourth week of April.... No more nasty Pred'

By May I regained feeling in my feet and legs and was able to walk again. My sinuses and lungs are clear and I have returned to work. I work 12 hour rotating day and night shifts in an oil refinery. My job is outside and involves extreme physical activities including climbing structures of 100', lifting and controlling heavy objects, and walking more than 5 miles every shift. I was extremely sore and stiff the first several weeks and still am. Doc says the Pred' did that crap to me, but I’m driving on. Everyone can. Don’t let this defeat you.

[Alysia]

welcome to the Forum Bing :) thanks for sharing :thumbup:
pred can make you raging. not was my case though but I know it can.
you are not mean. it was just the pred.