Guest guest Posted February 5, 2002 Report Share Posted February 5, 2002 Terry, I always enjoy your e-mails because you have a great sense of humor. This e-mail was different and was shocked at what you have been through and your positive progress to date. Congratulations on your success. I hope those little buggers go away and stay away. In all that they have done for you, have they determined the cause at all? in Pa. > >Reply-To: urticaria >To: urticaria >Subject: Re: Mayo Docs, to: Lori >Date: Tue, 05 Feb 2002 17:05:30 -0000 > >Hi Lori, >Please give my best to Dr. Hunt. Tell him I wish him my best, and >that we sure do miss him here in Rochester. OK, so now for the story. >After many doctors and many different meds, I went to Dr. Hunt based >on a recommend from another member of this group who was also taking >the interferon. At the time I had a bad relapse and had to increase >my prednisone usage to 65 mg per day. Dr. Hunt had me try the >colchicine and dapsone and etc. with no luck. He then put me on the >interferon at 3miu per injection 4 times a week. It took a little to >get used to because it can get you fatigued. We started tapering off >the prednisone by 5 and 10 mg per week. When I got to about 35mg per >day, we had to increase the interferon to 5 times a week because the >hiving was a littl more active. I was able to get to 15 mg of >prednisone. I kind of got stuck there for a few weeks. Dr. Hunt left >the Mayo around that time and I started seeing Dr. Volcheck who I also >like very much. Before Dr. Hunt left, he suggested that we may go to >6miu per injection and Dr. Volcheck agreed. So I went to 3 injections >per week and tapered 1 mg of prednisone per week. Eventually at this >does of interferon, I have been able to get off the prednisone. Dr. >Hunt and Dr. Volcheck also supplemented my meds with 180mg of Allegra >x 2 per day, (which never worked before) and 50 mg of atarax before >bed. I have also been taking 400mg of tagamet 2 times a day and 40mg >of pepcid once a day. I have been off of prednisone since 11/30/2001 >and of course my health continues to improve from the prednisone side >affects. I had prednisone induced diabetes Type II, and I'm now >almost off the diabetes meds. Probably just a couple more months and >my glyco hemoglobin will be back in a normal range and controlled by >diet alone. I'm still at 6miu 3 times a week of the interferon and >Dr. Volcheck believes we can start to reduce that soon as well. He >discussed that we will try and taper the interferon as well, and that >we will go for 6 to 8 more months. He also believes that I will be >hive free at some point in time, and so do I. > >If you do some research on the interferon, you'll see that the many >medical problems that it is used for, usually require 12 to 18 months >of treatment. Your body will get used to the interferon in about 4 >weeks and the side affects could even disappear. They have for me. >No fever, no fatigue, no flu like symptoms. I take the injections >before bed, and now the only side affect I have is that it can make >you have some vivid dreams once in awhile. > >I have battled this disease for 11 years now, and finally see some >light at the end of the tunnel. If by chance things stay just as they >are for me, I have at least gotten off of the prednisone and would >continue to work at having antihistimines control the CU. But as each >month passes, I see improvement. As I mentioned, I've been off >prednisone for a little over 2 months now, and at first the hives were >active. But, over the last week, they have not been much at all. I >do get some little one that seem to disappear in about an hour or so. >Exercise and weight loss have helped dramatically as well. Even if I >had to stay on a maintenance dose of interferon, I'd be ok with that. >So you see, I am so greatful for Dr. Hunt and Dr. Volcheck, you can't >imagine. The quality of my life is greatly improved. I read about >the interferon treatments about 4 years ago, and am happy that some of >us are getting it. It seems to be working for some of us. > >Hope this helps, Terry > > > > > Terry: I saw your recent post re: Mayo docs, which related to a > > question I posted last week. I am seeing Dr. Loren Hunt (formerly >of > > Mayo). I believe that you also saw him last year(?) at Mayo, and he > > began the alpha interferon treatments for you. I see in your most > > recent post that these treatments have continued for a year. This >is > > the treatment that Dr. Hunt has suggested for me, that may begin > > today, since I have not responded to the colchicine or dapsone. Can > > you tell me about how you responded to these alpha interferon > > injections? I assume that there has been some success since you >have > > continued this long. Could you tell me about what I might expect >from > > this treatment (side effects and results)? Thanks. Lori Hitchcock, > > Athens, GA. > _________________________________________________________________ Get your FREE download of MSN Explorer at http://explorer.msn.com/intl.asp. Quote Link to comment Share on other sites More sharing options...
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