Prednisone taper

[Doug]

Wow Doug. Would you come on my appointment with me??? I printed out you e mail and I'll review before I go in. It said everything I need to say!!!! Thank you

My pleasure! Remember to be nice. Ha! No one likes confrontation, few like to confront. In your case, resolving this communication issue with your nephrologist is too important to put off until you need a transplant, say, or an obituary for the local paper. Some of the doctors mentioned in this forum seem dense enough not to realize how serious our disease can be. So many doctors to train, and we do not have the time.

[Sangye]

I know that tapering pred can cause joint and muscle pain. When I first tapered off it in '07, I got severe pain that was really active Wegs. My lousy rheumy at the time kept saying it was just the taper, but I knew it was the exact same type of pain and stiffness I had when I was dx'ed.

I'm down to 3 mg pred (took me 3 wks to get down from 4mg!) and I'm getting a lot of random, major jabs of joint pain. It doesn't feel like the Wegs joint pain at all, but it's pretty intense. Some jabs of pain are in weird places. Just now it was in the middle of my forearm--very sudden, deep pain. And aside from the jabs of pain, most of my joints feel very arthritic, achy.

Anyone else experience this?

[elephant]

My jabs are mild, and I just think as long as it does not get swollen or worse or come with the other signs of Wegeners, then I will not freak out.
My pain is sometimes in the left upper arm, and left wrist. I even had left ankle pain yesterday, mild though.
Sangye, I know you will keep an eye on it. Can you email your Weg specialist?

[Sangye]

Yeah, if it's still going on by Monday I'll email him. I don't have other symptoms of Wegs and this pain is so weird I think it has to be from the pred. But man, some of the jabs have taken my breath away for a second!

[jola57]

Sangye, you are brave. I have been tapering 1mg every 1 1/2 month at least and that is with alternating 8/7, 7/6. after a month I am ready for 5/6 but also scared this is when last year i flared and had to go back on cyclo. Pain is not that bad just feeling arthritic but berable. I know what you mean about the jabs, its like someone is sticking an ice pick into that spot. Good luck with the taper. Go slow.

[stikker]

OMG!!!!!!! I am down to 20MG prednisone and I am human again. Oh don't get me wrong. I still have a hump and a huge face, but I feel human. I can breath. I am comfortable in my body again. I have more energy. I was afraid I would never be normal again. I didn't know what was Wegs and what was drugs. Turns out it was all drugs. The treatment will kill you if the disease doesn't.
Met this week with wegs Dr(Merkel, I love him) He said he thinks I am in remissison. First time I have heard that word. I like it.
One more month on cytoxan and and then Azo. He wants me on no prednisone. Nephr wants 7.5. Another battle Dr Merkel will win.
Once I switch to azo I am going with just Dr Merkel unless I flare. It will be nice to only have 1 dr. These appointnemts are killing me. Tough to keep a job.
stikker1

[Sangye]

Jolanta-- I'm comforted that the taper is probably what's causing the pain. Not comforted that you have pain too, but you know what I mean. I'm lowering by 0.25mg a week. It's impossible to go slower than that! Dr Seo said to lower by 1mg a month--no faster. I stay on each new dose until any symptoms calm down, so I might stay on this 3.0 mg several more days.

Stikker-- (LOL--nice to meet you! Doesn't it feel like you have a different personality once you taper pred some?) I agree that you should definitely go with Dr Merkel's opinion on the pred. Ask him how often you should see your neph. It might be every few months for follow-up. Meanwhile, I'm glad you have a lot more energy. Be careful though-- this is where a lot of Weggies get in trouble and start overdoing it. Your body is still on major drugs and is trying to deal with them while recovering from Wegs. That takes a lot of energy! Make sure that whatever else you do leaves enough energy for that to happen or the Wegs can flare. The 20 mg pred is still a lot-- it's giving you a huge energy boost each day. That's borrowed energy. So take it easier than you think you should, okay?

[elephant]

Congrats Stikker for feeling human! Even at 20 mg I felt better too. Just think you will feel super duper human when you get down to 10 mg of Prednisone.. Sounds like a party to me!

[Lightwarrior]

I'm still at 40mg pred. You mean there is a point where you feel human??

[Sangye]

Pred or not, 4 years into Wegs and I still have yet to feel human. I hope it happens soon for you, Lightwarrior.