Guest guest Posted December 5, 2001 Report Share Posted December 5, 2001 Having a rough time Been flaring since last week. My nose, cheeks & right eyelid. I am so disgusted. My throat was swelling from the top down as it has in the past when they thought I was having a anaphylaxis episode. Called Dr. & he added 20 mg of pred at lunch & dinner. Called the new rheumy on Mon. to touch base. He originally told me last Thurs to go down from 60 to 50 of pred on Sat. although I was flaring. I stayed on the 60. Picked up new prescription today since I was running out of the 20 mg tablets. I will see him on Monday when he wants to start me on Imuran. I am so miserable. My nose is sore but not as bad as before. My left ear is tender at the very top although no redness, swelling or blisters. My face has swollen like a balloon and red on the nose & cheeks much worse than the pred swell. Talked to the gastro guy today for the results of the ph test I had done three weeks ago. He said it didn't show reflux. He thought the burning in my throat & chest might be heart related but I had a stress test done last year when I had the costochondritis & it was normal. He said it could be from the disease so I will talk to the rheumy on Monday. I just have the burning all the time. Have been laying low, just working on some calendars I am scrapbooking for my kids. I just sit & cut up pictures & paste them on calendar pages. Tonight my youngest daughter & I are going to make cookies. She hates to cut them out & use the cookie press & going back & forth to the oven would be too much for me, so I will sit & cut & press while she does the baking. I live in IL & not sure what the temp is but it was 59 at 8:30 this am. It was supposed to get up to 65. Definitely not Dec. 5 weather. Hope the digest comes through. We were one of the 4 million people who lost their internet on Sat. Hopefully it will work. I did re-register with the group under the new address. Susiecue Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 5, 2001 Report Share Posted December 5, 2001 Having a rough time Been flaring since last week. My nose, cheeks & right eyelid. I am so disgusted. My throat was swelling from the top down as it has in the past when they thought I was having a anaphylaxis episode. Called Dr. & he added 20 mg of pred at lunch & dinner. Called the new rheumy on Mon. to touch base. He originally told me last Thurs to go down from 60 to 50 of pred on Sat. although I was flaring. I stayed on the 60. Picked up new prescription today since I was running out of the 20 mg tablets. I will see him on Monday when he wants to start me on Imuran. I am so miserable. My nose is sore but not as bad as before. My left ear is tender at the very top although no redness, swelling or blisters. My face has swollen like a balloon and red on the nose & cheeks much worse than the pred swell. Talked to the gastro guy today for the results of the ph test I had done three weeks ago. He said it didn't show reflux. He thought the burning in my throat & chest might be heart related but I had a stress test done last year when I had the costochondritis & it was normal. He said it could be from the disease so I will talk to the rheumy on Monday. I just have the burning all the time. Have been laying low, just working on some calendars I am scrapbooking for my kids. I just sit & cut up pictures & paste them on calendar pages. Tonight my youngest daughter & I are going to make cookies. She hates to cut them out & use the cookie press & going back & forth to the oven would be too much for me, so I will sit & cut & press while she does the baking. I live in IL & not sure what the temp is but it was 59 at 8:30 this am. It was supposed to get up to 65. Definitely not Dec. 5 weather. Hope the digest comes through. We were one of the 4 million people who lost their internet on Sat. Hopefully it will work. I did re-register with the group under the new address. Susiecue Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 6, 2001 Report Share Posted December 6, 2001 Susiecue, Sorry to hear that you are having a rough time. When I was first diagnosed I did all kinds of crafts too. Had to stay busy and try not to dwell on the mess and shape I was in.LOL I think I made everyone painted T-Shirts and bags that year for Christmas! Even gave one to the Rhuemy!LOL Poor guy! I have been on Imuran for over 7 years now! I hope it works as well for you as it does for me. It is my miracle drug. It gave me a fairly normal life back. Sure I still flare but they are not nearly as bad as they were before the Imuran. Just lay low and take care of yourself until things get better. I will have you in my thoughts and prayers! Lots of Love Glenda Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 6, 2001 Report Share Posted December 6, 2001 Susiecue, Sorry to hear that you are having a rough time. When I was first diagnosed I did all kinds of crafts too. Had to stay busy and try not to dwell on the mess and shape I was in.LOL I think I made everyone painted T-Shirts and bags that year for Christmas! Even gave one to the Rhuemy!LOL Poor guy! I have been on Imuran for over 7 years now! I hope it works as well for you as it does for me. It is my miracle drug. It gave me a fairly normal life back. Sure I still flare but they are not nearly as bad as they were before the Imuran. Just lay low and take care of yourself until things get better. I will have you in my thoughts and prayers! Lots of Love Glenda Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 6, 2001 Report Share Posted December 6, 2001 Susiecue...Gosh...you sound like you are miserable... I sure hope the new dose of pred will stop the flare. Know I'm thinking of you....You rest and take it easy til Monday and Please let us know what the dr says... Gosh ..You seem to be having Calif. weather...It is only in the high 40's this week and down to the 30's at night... Sunny California right?? LOL Please take care. hugs Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 6, 2001 Report Share Posted December 6, 2001 Susiecue...Gosh...you sound like you are miserable... I sure hope the new dose of pred will stop the flare. Know I'm thinking of you....You rest and take it easy til Monday and Please let us know what the dr says... Gosh ..You seem to be having Calif. weather...It is only in the high 40's this week and down to the 30's at night... Sunny California right?? LOL Please take care. hugs Quote Link to comment Share on other sites More sharing options...
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