Guest guest Posted May 8, 2000 Report Share Posted May 8, 2000 Connie, I want all the stories I can get. Purpose? 1. To let newly diagnosed Myo patients to know what's ahead and they are not alone. 2. Myo patients talking with other Myo patients and their families, to understand the terrible disease. 3. I hope to get the chief of neuro at the UTSWMC in Dallas (who is in our support group) to use the book and it's contents as " an evaluation " of the lack of knowledge among the medical professions as well as to Myo patients. 4. There is so much information in the stories that the book could basically be read as a " study " forum if data is input into a medical survey program. (The book would be of more value that a " study group of 12 people " simply because of the volume of stories and the experiences of having Myo. I would encourage every one to think about submitting their story. Either Email or Download to JRKilpatrickMYO@... Thanks, everyone, Jim Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 8, 2000 Report Share Posted May 8, 2000 y'all when I first sat down to write my bit, I just didn't know where to start. my sweet hubby said to just start and rearrange later. Once I sat down and started, it just flowed. I do wish I had mentioned a few more things, but I feel good about what I submitted. It will help other myositis patients not feel so alone and help the family members and friends and doctors too, to understand what we go through. Please, do consider submitting a story, you can remain anonymous if you'd like too. *karen* Re: hello everyone Connie,I want all the stories I can get. Purpose? 1. To let newly diagnosed Myo patients to know what's ahead and they are not alone. 2. Myo patients talking with other Myo patients and their families, to understand the terrible disease. 3. I hope to get the chief of neuro at the UTSWMC in Dallas (who is in our support group) to use the book and it's contents as "an evaluation" of the lack of knowledge among the medical professions as well as to Myo patients. 4. There is so much information in the stories that the book could basically be read as a "study" forum if data is input into a medical survey program. (The book would be of more value that a "study group of 12 people" simply because of the volume of stories and the experiences of having Myo.I would encourage every one to think about submitting their story. Either Email or Download to JRKilpatrickMYO@...Thanks, everyone,Jim Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 11, 2000 Report Share Posted May 11, 2000 cool , so i hope he did enjoy it. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 13, 2000 Report Share Posted July 13, 2000 Hello everyone... About the Prednisone... When I was on 60 mg a day and had such a terrible time. This is what we did. Every 7 days I got to lower it 5 mgs. While your on a high dose you can do this until you get to 20mg. Then you must really take care of the amount you lower it too. After I reached the 20mg mark I then went 2mg every two weeks... there were times, right around the 14mg mark, when I could tell I needed more so I went up just 1mg more...then waited another 7 days and dropped the 1mg....then 1mg every 7 days until I got to 10mg...then it was 1/2 to 1mg every two weeks. My concern is Ferns 60 mg one day then 5mg the next. It would seem to me that it would be a shock to the system to not receive the usual dose of 60 mg.... I can, however, see 60mg one day and 40mg the next day.....There are many people who do this and it works for them. Lower the Prednisone can be tricky business if you lower it to fast. Just my opinion..... Take care everyone Vicki-PM Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 13, 2000 Report Share Posted July 13, 2000 Hi Connie....Just a question for you. Does the antibiotics cure the Myositis or will you have to take the antibiotics for the rest of your life? Vicki-PM Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 13, 2000 Report Share Posted July 13, 2000 Hi Vicki, Some people choose to take the antibiotics indefinitely, and some choose to go off of them after all blood work returns to normal, along with all symptoms. It is really up to the individual and their doctor. Some have gone off of them, and their symptoms returned. Some decide to reduce their antibiotics....say 50mg two or three times per week and stay on that dosage. Still, others have gone off of the antibiotics, and are still doing very well. When the time comes for me to decide.....I am leaning towards taking a low dose, maybe indefinitely. The doctor I see, Dr. Franco of Riverside, CA, has been using this treatment for over 10 years and has a lot of patients (can't remember how many at the moment) and I will go along with his recommendation. hope this helps......although sort of a wishy-washy answer, Vicki :-) Connie Re: hello everyone > > Hi Connie....Just a question for you. > > Does the antibiotics cure the Myositis or will you have to take the > antibiotics for the rest of your life? > > Vicki-PM > > > ------------------------------------------------------------------------ > Your old buddies are not out of range anymore. Free search with > Military.com's Personnel Locator. > http://click./1/4158/11/_/561170/_/963533725/ > ------------------------------------------------------------------------ > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 13, 2000 Report Share Posted July 13, 2000 Oh my gosh, I am so sorry to have confused everyone. What my doctor wants me to do is take 55mg one day and 60 the next for an entire week before decreasing it again. Gentle hugs, Fern Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 14, 2000 Report Share Posted July 14, 2000 It is so funny that you explained the adrenal glands the way you did. I took Bobby out to dinner last night for his birthday and we had this very conversation. I was trying to explain how the medicine works and what the goal is, etc. I probably know more about the side effects of prednisone that most because of my nurses training. Sometimes it can be nice to know a lot of information and sometimes it is better not to know so much. I hope you saw my earlier message that I didn't explain the to well the way the doctor wants me to decrease the prednisone. I took 60 mg yesterday and today I will drop to 55mg. Then I will alternate 60 and 55 for a week before I drop it again. My question is when I go to decrease it again do I take it of the 55 or the 60? I know it will be the same dose over two days, but I want to do it the correct way and I cannot remember what the doctor said to do next. Gentle hugs, Fern Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 14, 2000 Report Share Posted July 14, 2000 I haven't started the antibiotic therapy just yet Ann-Marie. I am waiting until my appointment to see my GYN on July 21st. My husband and I have been wanting children for years, but we haven't been able to even think about pregnancy while I've been on all of the meds. Now that I have been off of them to get ready to go on the antibiotics, I thought it would be a great opportunity to try the pregnancy route. I am trying not to get my hopes up too high until after we (hubby and I) talk with Dr. , my GYN. My husband is afraid for me and wants to be certain this is truely do-able. But I'll let you know if, or when, I do start the antibiotic therapy. love, karen dm Re: hello everyone Dear , ...Have you started the antibiotic treatment yet?Love,Ann-Marie .. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 14, 2000 Report Share Posted July 14, 2000 Fern, JDMS is different in many ways... however, if you alternate between 60 and 55mg, then you should drop to 55mg all days and then 55 mg and 50mg, once your body adjusts to each dose. Does that make sense? Vicki, Teddi, help! This is how we did 's. He did stay at each does for at least a few months. Cari --- Starflower wrote: > It is so funny that you explained the adrenal glands > the way you did. I > took Bobby out to dinner last night for his birthday > and we had this very > conversation. I was trying to explain how the > medicine works and what the > goal is, etc. I probably know more about the side > effects of prednisone > that most because of my nurses training. Sometimes > it can be nice to know a > lot of information and sometimes it is better not to > know so much. > > I hope you saw my earlier message that I didn't > explain the to well the way > the doctor wants me to decrease the prednisone. I > took 60 mg yesterday and > today I will drop to 55mg. Then I will alternate 60 > and 55 for a week > before I drop it again. My question is when I go to > decrease it again do I > take it of the 55 or the 60? I know it will be the > same dose over two days, > but I want to do it the correct way and I cannot > remember what the doctor > said to do next. > > Gentle hugs, > Fern > > __________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 14, 2000 Report Share Posted July 14, 2000 It took me f o r e v e r to get my dose down ......think we stayed at least a month at each level and never more than 5mg at a time.. ,,,,then when got down to lower doseage it was 1mg decrease per month......and.... several times we had to go back up..... like now..I'm at 10mg every time I get down to 4 or 5 I start hurting and have to go back to 10,,,,,Yipee...oh boy....my magic number ....lol Teddi - dm Quote Link to comment Share on other sites More sharing options...
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