Finally getting off Preds

[Dumpy]

Went to my Rhumy last week and after looking at my blood work the sed rate was at 16 and has been close to that for some time now and he is taking me off of the Preds. It is really a good feeling to know that I am finally getting off some of the meds but it is also kind of scary too. It is like looking over your shoulder and trying to make sure that our BFF is not sneaking back up on you and getting ready to jump back onto your back. Hopefully it will hold up and I can start getting off of the Immuran soon.
Hopefully every one has started off with a good New Year.

[Jack]

Great news if you can manage without prenisolone. How much are you taking and for how long? It could take you some time to get down to zero safely.

[Dumpy]

Jack I first started on Peds when the doctors diagnoised me with BOOP in March of 07 and was put on 40 mg a day. After going through 11 months of treatment for the wrong thing and it was determined that I had Wegs I was put on 60 mg of Preds along with the Cytoxin in Feb. of 08. My Rheumy has been slowly backing me off of the Preds for the last year. I was on 2.5 mg every other day for the last 2 months. I went to a wegs specialist back on the first of Oct 09 and she has been talking with my Rheumy and decided it was time to step off of the preds.

[Jack]

That does not sound like very much at all. Hope you can make the final steps without problems. I would think there is a very good chance that you will.

[elephant]

Being on 2.5 mg of prednisone is not much at all. Wish you the best and hope it works out for you. Keep us updated on how your doing.

[Sangye]

What fantastic news, Dumpy! I would think if you've done well at 2.5 every other day for 2 months, you'll be just fine once you stop it. I'm SO glad you saw that Wegs specialist.

[ I would add that while we generally think 2.5 mg is not much, it really depends on the person and their pred history. I can't even tolerate 5 mg/day-- it acts like a much higher dose. Even my Wegs doc was amazed. I developed a moon face and supraclavicular fat pads after taking 5 mg for only 2 days. I had been off pred for 2-1/2 years by then!

Thankfully, he understood and accepted what was happening, and put me on "only" 4 mg/day. Even so, if you saw my body changes with that, you'd swear I was on 40 mg or higher. During the 4 weekly ritux infusions, the 100mg IV solumedrol (equiv 150mg oral pred) nearly killed me. I was so weakened by it. ]

[janene]

Hi.
this is Janene. My doctor has now switched me to Imuran. I noticed you take this too.. Did it make you nauseus?? I am only on one tablet/day and he wants to increase it to 2 tablets... If you were sick did it settle down or should I tell him and try something else. thanks

[Rose Cozzette]

everything makes me nauseous they put me on. when i was getting iv cytoxin i insisted on being given strong nausea meds twice on that day and it made all the difference in my comfort level. it also was iv, i find that oral meds dont work as well for nausea. just looking for relief when it gets bad.

[Rose Cozzette]

so how are you doing now? i still feel docs overdose us, esp women. i have stayed on 50mg of oral cytoxin as it contd to bother my stomach, still have diarrhea almost daily, and pain. look forward to getting off it and try another one. keep in touch...