Finally getting off Preds

[Jack]

elephant - you can't just decide to lower you pred without approval and monitoring of your condition by your consultant. It is a far too critical part of your treatment and not to be treated lightly. Getting it wrong and trying to reduce too early could easily result in a flare.

[Rose Cozzette]

thanks, i am new to this so wanted to check it out. how are you doing? rose

[Rose Cozzette]

elephant, thanks for sharing. i wish we didnt have to be such an experiment for the med. field. sigh... my rheumyis supposed to also be experienced with weggie, but i am wondering. i see him next week. i struggle with accepting this disease as lifelong. so am up and down emotionwise. i dont like that i went from being so healthy to so old also. try to put my energy into more holistic things like Reiki and myofascial techniques. i am trainedin both so am teaching my p.t. and she is doing well with them. they both have facilitated my comfort zone to improve. anyone out there using these? would love to see these help others. both are accepted techniques in rehab. rose

[elephant]

Jack, your right. I see my local Rhuemy April 1st, so I am going to see if it is ok. I see my ENT down in Charleston,sc tomorrow and get his input to keep the sinus close to normal.

[Sangye]

Rose, you can verify your Wegs doc's experience by contacting the VF and asking if they know of him. If not, he's not.

[JanW]

If you are comfortable, Rose, you can always ask your doctor how many Wegs patients he has seen, and whether he has someone to consult with should he need to. Now granted, some docs may have such an offputting manner that you feel as though you can't ask this question, but I think that the best doctors (I believe Sangye said this earlier) welcome the informed consumer. He shouldn't feel threatened at all by knowing that you want someone who is familiar with this very rare disease. It is absolutely not disparaging to his practice if he has never seen it before. As my ENT (who has performed hundreds of SS surgeries before mine) said, "you've got to be humble. Much more skilled surgeons than I have had someone die on the table from this procedure." Although he immediately added that he had never lost a patient!

[Rose Cozzette]

i will ask him, i think he is burned out. he seems to run around and distracted. i see him tomorrow. i have seen so many docs up to now and have worked with so many that i know i have to be direct or they dont hear me. thanks.

[Rose Cozzette]

i will do this, i hadnt thought of it. i see him tomorrow. did you have continuing sinus problems even after treatment? mine never seem to let up.

[JanW]

Your sinus situation should get better once your WG is under control. In fact that's probably one of the ways that you will know that it is getting better.

[Rose Cozzette]

glad to hear this, i was wondering if it would improve.