- This topic has 18 replies, 6 voices, and was last updated 13 years, 9 months ago by
.
-
Posts
-
I just got diagnosed with Dermatomyositis. I am currently on high dose steroids-which I hate, Methotrexate and plaquenil. I am not tolerating these meds well and am wondering if anyone else is having the same issues? Dermatomyositis mimics RA and Lupus. The slin ulcers have been so painful. I would love to hear from someone who knows something about this horrible disease!
Julie
Julie,
sorry you had to come to RBF but a warm welcome anyway. I also suffer from Dermatomyositis and have problems with the skin ulcers on my hands and even feet and severe muscle weakness. I have been on Minoxin and Biaxin for at least 26 months now and doing lots better than on Prednison, Enbrel and Cellcept. I am also taking LDN wich has helped me with the muscle weakness. I used to be very bend over, now I am more upright, still have some muscle weakness but not as bad as last year.
I found some help with soaking my hands in warm water and cornmeal and then applying either Manuka honey hand lotion or Vanicream light (Walgreens). Seems the water and cornmeal takes care of the sores and the Vanicream helps to stop the skin sores. I also use it on my feet. I buy a large bag of just cornmeal and use about 1/3 cup in about 8 cups of water, soak for 20 minutes and then dry the hands and feet and apply the lotion. (fresh water and cornmeal for each area) Works wonder.
I don't have Lupus so I think that helps me some. I am not sure what people take on antibiotics for Lupus. Someone else from the board probably will chime in and help.
Eva:D
Eva Holloway
Hi Julie,
My husband suffers from dermatomyositis with pulmonary fibrosis. I should put the suffers in the past tense as he is basically recovered now. He recovered using IVIG and a Lyme disease protocol. Others here have done well with the low dose AP protocol (some have combined it with low dose naltrexone also).
SORRY about your diagnosis. I also have Dermatomyositis. I was diagnosed with it 2 years ago. I had lots of problems with Methotrexate and had to stop taking it. I just started AP Therapy 3 weeks ago and seems to be better. I am also taking 10 mg of Prednisone AND can't wait to get off of it!! I haven't had issues with the ulcers but have muscle weakness, its not as bad as it was in the beginning. I am hoping with the AP therapy that I will be back to normal soon.
Tonya
Thank you so much for the idea about cornmeal and water. I have tried every cream known to man from the dermatologist and nothing works. The muscle weakness is not bad yet. Just comes and goes, but it is the ulcers on my hands that I can't deal with! It makes it difficult do do things that I used to be able to do! I am only 47 yrs old.
Thanks you for replying to me. I also live in Iowa and see that you do too! Do you see a rheumatologist or another type of doctor for your dermatomyositis? What antibiotics are you on that have helped? I cannot tolerate the Methotrexate and they just keep wanting to up the dose on me. My hair is falling out and I had to get it cut short!
Julie
Thank you for your response. I am so glad I found this site as now I don't feel like the only one in this world that has this horrible disease! How long did your husband have to be on IVIG therapy and Lupus regimine? What is the Lupus Regimine? I am so desperate to find something that works!
Thanks
Julie
Julie,
One of our best AP docs is in Iowa. He is semi-retired, but still seeing patients.
I'll send you his contact info in a PM (private message) that you can retrieve by clicking on “one new message” at the top right of this page.
Take care…..kim
Tonya, Are you going to the Doctor in Ida Grove for your AP therapy? If so do you know if Insurance covers it? How long does it take to get in?
Julie
Good morning Kim, I accidently deleted the message you sent me(I'm not good with computers). Could you send me the info on the doctor from Ida GRove again? I met someone yesterday in Des Moines that has been to him and had the treatment and is so much better now! It gave me faith that there might be something out there to help me. Also, where can I purchase the Road BAck Foundation Book?
Julie
Iowa
[user=2307]BJK7493@aol.com[/user] wrote:
Good morning Kim, I accidently deleted the message you sent me(I'm not good with computers). Could you send me the info on the doctor from Ida GRove again? I met someone yesterday in Des Moines that has been to him and had the treatment and is so much better now! It gave me faith that there might be something out there to help me. Also, where can I purchase the Road BAck Foundation Book?
Julie
Iowa
Hi Julie,
I resent the information.
The book, The New Arthritis Breakthrough, by Henry Scammell can be ordered online from Amazon, or you might check your library or local bookstore.
Take care….kim
I did see Dr. S. in Ida Grove. He is awesome!! I made my appt the end of Feb. It took about 4-5 weeks but well worth the wait. Insurance covered some of my appt but not all of it.
The topic ‘ Dermatomyositis’ is closed to new replies.