Guest guest Posted February 3, 2003 Report Share Posted February 3, 2003 Sue, Thank you for your words of wisdom. I have to get my stuff together. I have my ivig this week and it seems to take up the whole week!! I am really tired lately again and getting very frustrated by it. I am sure it is due to the pred drop. I am tempted to go back up. Can anyone tell me how long they felt like crud after dropping from 20 to 15/mg of pred???? Thanks again, Zanna Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 3, 2003 Report Share Posted February 3, 2003 Zanna, I can understand you being nervous about your SSD. My son has been receiving SSD benefits for more than 20 years and we ALWAYS get bent out of shape when he gets called up(through the mail) with a list of a million questions to answer. The best advice I have is to go ARMED with all the paper work you have documented. The last review was so complicated he could not do it alone so I gathered up all brain surgery reports, Physclogical test results, pictures we took of him in hospital on several occassions, Physical Therapy, occupational therapy and speech therapy, follow up doctor visits, statements from the doctors concerning his ability and lack of stamina for work. He has these reviews periodically (every 2 or 3 years). The person at the Social security office zeroxed ALL the records and helped him fill out the form.I could have finished the form for him but I wanted her to see for herself how it was stressing him out. He was approved, never missed a payment but it took them 3 months to let us know he was still qualified.You can imagine the anxiety we went through. I am telling you this so you will not expect to get an answer ASAP. I feel you will probably remain on SSD due to the PM. Not many people really know what PM is or how it can limit your activities, so make sure ALL the doctors you see and the MDA will back up your condition. The good news is Drew(my son)is aable to work part time (12 to 15 hours a week) and still receive his SSD benefits. He works 4 or 5 hours a day 3 days a week. Try not to be over anxious as stress is a terrible thing even for a well person, not to mention Myositis. I hope this is of some comfort to you. BEEN THERE, DONE THAT AND WORE THE "T" SHIRT. We all love you and will continue to pray for you. Sue G Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 4, 2003 Report Share Posted February 4, 2003 Zanna... I never dropped the pred that many mg.at a time. I recall being reduced by perhaps 2 to 3 mg a week or so until I was down to a maintenance level. Even at that slow drop, though, I remember being weak and in more pain all during it. Annette -----Original Message-----From: mrsxanadu@... Sent: Monday, February 03, 2003 10:33 PMTo: OurMyositis Subject: Re: Zanna: SSD ReviewSue,Thank you for your words of wisdom. I have to get my stuff together. I have my ivig this week and it seems to take up the whole week!!I am really tired lately again and getting very frustrated by it. I am sure it is due to the pred drop. I am tempted to go back up. Can anyone tell me how long they felt like crud after dropping from 20 to 15/mg of pred???? Thanks again,Zanna Quote Link to comment Share on other sites More sharing options...
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