Prednisone taper and RTX question

[mmthomm]

Backstory: I have been on Prednisone now for almost a year (at lower doses) because they initially thought I had rheumatoid arthritis but after being diagnosed with Wegener's (severe) in Nov 2013 I went up to a high dose (60 mg/day) and did four weeks of RTX in December. I had a flare in January because they tapered my prednisone too quickly. I went back up to 40 mg of prednisone and did one 1 gram infusion of solumedrol which stopped the flare. So now I'm tapering prednisone again (argh!!). Three questions: 1.) how long did it take to see the maximum benefit from RTX (I've heard 2-6 months from an oncologist and 2-3 months from rheumatologist). 2.) how slow of a prednisone taper have people found to be successful in avoiding another flare (deathly afraid of that at this point) and 3) has anyone maintained remission with MTX and RTX only and no prednisone?


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[windchime]

Welcome to forum mmthomm. Sorry you had to find us, but glad you did. There is a lot of information on the site as I'm sure you've already discovered. Feel free to share your journey, protocols, and questions with us.

Personally I'm stuck at 25 mg. I've been on pred since November and every time I try to come down even a mg I have a hard time breathing. So right now I'm taking a break and will try again next week. Everyone is different re the pred taper. Some stay on a low dose indefinitely. If you catch a flare early enough, ie you're in tune with what's going on in your body, you just start meds again. Flares while no fun are manageable. Please don't live in fear of a flare as you will make yourself a nervous wreck. I don't have any knowledge of the other two meds as I'm on CTX. Good luck.

[pwc51]

Welcome - I share Cindy's sentiments. It is important to remember we are all different compounded by differnet consultants.

My experience:-
1) I have had two rounds of RTX. The first was effective within a couple of weeks. My consultant could not believe it s he commented it could take up to 6 months. The second probably took 2 to 3 months to fully take effect.

2) I have had several attempts to reduce prednisolone the first two were fairly slow tapers and no sooner had I approached zero than I flared. This last time we did what I would consider to be a crash drop 10mg to zero in 2 months. I had a fairly rough time whilst the body caught up but 3 months later I think I am just about OK!

3) I am now on MTX (20mg injected each week) - time will tell if it works longer term!

[Alysia]

Hi and welcome.
in my case I started to see good results about 3 months after the first round of rtx. still only after the second round my sinus start to really calm down.
pred tapering is indiviual. do it slowly. listen to your body. if you are going down and feeling some symptoms, go back to the previous dose, wait for stability and then try again.
I am stuck on 5mg. can't go down. it seems that pred is going to be my friend forever...