The Weggie Book - tell your story time

[marta]

Hey Terri, I've just sent it out to you. Glad you're back. Take care of yourself with those snotty nosed little urchins running around.

Luce, Luce, Luce... I'm happy for you but sad for us. This 'l-less' stint has given me so much giggles that I'm sad it's done. Maybe you'll find it too hard to work with a remote keyboard and go back to the 'and acking 's'

[elephant]

Terri, did you taper from 10 mg slowly going down 1mg every 4 weeks. I had a problem tapering...now I am tapering 1/2 mg every 4 weeks and I am down to 5 1/2 mg of prednisone. Keep an eye out if you start to feel worse.

[Sangye]

Terri, "truck hit me" sounds like the pred is too low. In May when I tapered too fast that's exactly how I felt. I kept chalking it up to this thing or that, but it was the pred. I continued like that for 3 weeks, when I saw Dr Seo. I was almost off pred! Dr Seo said that if I'd raised the pred within 2-3 days I could have continued the taper. But not after it had gone on for 3 weeks. He said I had to raise it all the way back up and stay there 6 months before attempting another taper.

(That was the plan, but within a week I got the hearing loss/vertigo thing and had to go back on high-dose pred )

How long has it been since you dropped to 7.5 mg? If your doc is okay with you changing your dose by yourself, I suggest you try 10 mg for a few days and see if the truck drives away....

[Terri]

Thanks Marta, I did receive the info.
Sangye, today is day 10 of the 7.5. I've been thinking the same thing of going back to 10 maybe for the week-end and see if I feel better.
Elephant, I went from 10 directly to 7.5 because my pills are 2.5 but I might try the 10 until Monday and ask the Dr. to prescribe me 1mg and slow down the taper.
I was on 7.5 for a year and we celebrated by going to 5. Within 3 months I started to flare so went back to 10 and have been on that for 5 months. I had been feeling about the best I had been physically so maybe I can't go lower then 10??? I don't know. I've even noticed more pain and swelling in my "bad " leg. Just a little. I've just thought of a good t-shirt picture.......a yo yo pred head weggie, that's what we are.....or 2 pred heads on a teeter totter....up & down, up & down.

[Sangye]

Terri, if it's okay with your doc, don't wait to bump up the pred again. I think the jumps from 10 to 7.5 and 7.5 to 5 are WAY too fast. Especially after being on 7.5 for a year, you can't just jump down to 5 overnight.

When you're at the higher doses (20mg and up), dropping 5 mg is no big deal. Even a drop of 10-20 mg is fine for some high doses. The lower you go, the slower you have to go. Anything below 10 mg is very slow, and once you get to 5 it's a snail's pace.

[elephant]

Terri, you mentioned pain in your joints. I am wondering if you need to increase your other immunosuppressant ( methotrexate, cellcept, imuran) to keep the WG more quiet? When I was tapering last year my sinuses got worse, but no joint pain. My Rhuemy wants me off prednisone because of the damage it has done to my body, so we might increase the Cellcept if I start to show worsening sinus problems. For me.....Joint pain that lasts over 5 days is indication that the WG is still very active. But joint pain can mean other things too.

[Sangye]

Can you tell the difference between pred-tapering joint pain and Wegs joint pain? I can--totally different. Pred pain for me feels more flu-ish and I can't reproduce it by moving a joint. Wegs joint pain-- oy! Feels like the joint is badly sprained or the bones are broken. Moving it is very painful.

[Jack]

My method of telling the difference is -

Wegs pain - like I would imagine arthritis to be. Joints hurt all the time and in spite of moving to try to find a comfortable position it just won't go away.

Pred pain - more a case of joint stiffness. I used to notice it a lot after driving the car and I would then discover that I could not walk for a few minutes until I got everything moving again.

But perhaps it affects us all differently.

[Sangye]

It must affect us differently. I have arthritis in a few joints and it doesn't even come close to Wegs joint pain. Also, for me Wegs joint pain isn't just the joint, it's the joint capsule (ie ligaments that support and surround the joint).

[elephant]

The joint pain was weird, sometimes could not move the joint. One time my hand had a large bump in the middle and I could not move my fingers. That is when I got my first prednisone taper pack ( before being diagnosed). Then the shoulder arm joint...could not move my arm up or down. Another prednisone pack and it took several months for that to go away and then right after that the knee joint hurt so bad I could barely walk.
I also noticed when I would walk for 20 minutes my knees and behind my knees would hurt. This is all before diagnosis of WG.