Guest guest Posted January 30, 2010 Report Share Posted January 30, 2010 Thank you for your reply, Beth. I'm 71 and diagnosed for 1yr. Just returned from 10 days in Israel. Had a hard time 'keeping up' at some locations; but, enjoyed the trip, nonetheless. The dry cough that I experienced was annoying. Saw from on-line research there was a study at J-H. They accepted me and I had to travel to Baltimore three times for double-blind study that lasted for three twelve week segments. The first twelve weeks it was obvious to me that I was taking the Thalidomide. My cough ceased and the side effects began. Constipation was the worst. When I stopped, the cough did not return until the cold weather began this winter. Fortunately, I live in LA and the severe weather is minimal. As a result of having participated, I receive the drug, gratis. It is a toxic drug. It does make one sleep, also. Dreams are affected. The goal of the study is to have T approved for the cough indication. At that time, it should be approved for Medicare and private insurance. No one is willing to give me a prognosis. I'm not looking for guarantees, but, would like to know what the history of others has been. When I quit riding my bicycle due to the weather, I was riding 5-6 miles with no problems. I'm anxious to resume and determine if I'm still able to do this. I was 'spinning' for 30 min. three times a week until about 14 mos. ago. I welcome any and all info. spec Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 30, 2010 Report Share Posted January 30, 2010 Spec,I was not on a thalidomide trial, but was put on thalidomide by a doctor at UCLA, who gave it to me based on a British study. I will agree with you that it did work. I wish I was still on it, but the doc I saw at UCLA left, and the new one said there was no basis for it to work. I also agree 1000% about the constipation. By the way, welcome to the group!arghKathy ILD/Hypersensitivity pneumonitis 3/08sSubject: forwarded by requestTo: "Breathe Support" <Breathe-Support >Date: Saturday, January 30, 2010, 2:23 PM Thank you for your reply, Beth. I'm 71 and diagnosed for 1yr. Just returned from 10 days in Israel. Had a hard time 'keeping up' at some locations; but, enjoyed the trip, nonetheless. The dry cough that I experienced was annoying. Saw from on-line research there was a study at J-H. They accepted me and I had to travel to Baltimore three times for double-blind study that lasted for three twelve week segments. The first twelve weeks it was obvious to me that I was taking the Thalidomide. My cough ceased and the side effects began. Constipation was the worst. When I stopped, the cough did not return until the cold weather began this winter. Fortunately, I live in LA and the severe weather is minimal. As a result of having participated, I receive the drug, gratis. It is a toxic drug. It does make one sleep, also. Dreams are affected. The goal of the study is to have T approved for the cough indication. At that time, it should be approved for Medicare and private insurance. No one is willing to give me a prognosis. I'm not looking for guarantees, but, would like to know what the history of others has been. When I quit riding my bicycle due to the weather, I was riding 5-6 miles with no problems. I'm anxious to resume and determine if I'm still able to do this. I was 'spinning' for 30 min. three times a week until about 14 mos. ago. I welcome any and all info. spec Quote Link to comment Share on other sites More sharing options...
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