Finally some light and maybe an end to the tunnel.

[drz]

After five months in hospitals and rehab facilities I made it home. Labs are finally good enough along with no obvious clinical symptoms so rheumatologist is beginning taper on prednisone with plans to get me off Cytoxan to something less toxic by end of year if I can handle taper of Prednisone. I am down to 22.5 mg daily now and labs have been cut to every two weeks. The plan is keep cutting prednisone slowly to see how low I can go. I was told I will most likely be on low dosage of prednisone for long time since i started with 1000 mg Solmedrol in April. A switch to somethig less toxic will be considered once Prednisone is under 10 in lab and clinical picture still look good.

It is nice being home and I enjoy sitting outside, going out to eat at various restaurants, watching fall colors, feeding the birds in back yard. I was disappointed that some of my more grandiose dreams of going traveling, fishing etc have to wait since a 50 foot walk seems to reach my endurance limits but I think my strength is slowly increasing, so maybe next year.

Only concern so far is some pain injoints and foot seems to be returning as Prednisone is reduced. could this be Wegener's disease? Podiatrist doesn't know. Rheumatologist hopes it is temporary thing.

[misskay]

drz... we have just dropped my Pred to 25mg (was at 80 for a while, then 60 for a while. Slowly tapering down by 5mg every few weeks). I also noticed some joint pain returning once we dropped below 40mg. I keep hoping it is just the body getting used to the lower dose, but the past few days the knees and hips have been hurting even worse :/

Also know exactly what you mean about stamina... I have days when I feel 'pretty good', so I try to do some of the things I used to do. Doesn't take long before I run out of gas...

[Sangye]

Pred pain usually goes away a few days after dropping to a new dose. For me, it felt more like flu-type pain than the Wegs joint pain. I could clearly tell the difference, though I have to admit that the pred pain was so bad at times that I was really worried. If it's Wegs pain, it will get steadily worse as you taper the pred.

drz, I'm so glad you're finally home where you can heal faster. I don't understand your doc's thinking about keeping you on low dose pred for a long time. The longer you're on it, the harder it is to ever get off. 1,000 mg in April is not that long ago. I think most Wegs docs would have you off it by the end of the year if your labs and symptoms look good. I'd grill him on it if I were you....

Misskay, a 5mg drop might be too much at once, especially if you were at 60 or 80 for awhile.

[drz]

I think we are looking at real slow taper 2.5 every 2-4 weeks till we get to 10 mg, then 1 mg every 2-4 weeks depending upon symptoms and lab work. I am just happy we starting down that trail.

[elephant]

dr hope things start to turn around for you. I would assume if your joints don't get better after three days and still very tired...it could still be the wegeners ..like Sangye stated.

[Jack]

Only concern so far is some pain injoints and foot seems to be returning as Prednisone is reduced. could this be Wegener's disease? Podiatrist doesn't know. Rheumatologist hopes it is temporary thing.

Foot pain seems to be very common even when in remission. There is a thread on the subject, but I can't get the link to work. Seach titles only for "foot pain" and you should find it.

[JanW]

yes. I still have my ankle pain and go to PT for it; the decrease in pain directly correlated with the use of a medrol pack and later an increase in mtx, so I'm going with it as Wegs pain.

It's so much better than it was, though, I'm not complaining right now.