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[user=1713]alice in wonderland08[/user] wrote:
Is there anyone out there that can relate to me?
Hi Alice and a warm welcome to the RBF support forum! 😀
We have a number of dermatomyositis posters here, including Eva Holloway, TroysMom (son with DM) and Parisa (hubby with DM). I'm sure there are others and they will post when they see this to send you a welcome!
In the meantime, to keep you hopeful, please read the Remission Update of Karen N. in RBF's Fall 2008 eBulletin (scroll to bottom of following link)…she had both DM and Lupus and has been enjoying remission now for 6 years or so!
https://www.roadback.org/EmailBlasts/ebulletin_fall08.html
And there were a few DM studies/articles in the summer 2009 edition, too, tying DM with infectious causes:
https://www.roadback.org/EmailBlasts/ebulletin_summer09.html
Peace, Maz
Hi Alice,
my name is Eva Holloway and I have DM since 2005. I definitly can relate to your situation. I have been on AP for 18 months now and doing a lot better, the only problem left is the weakness in my back and my hands.
I have started LDN about four weeks ago and still at the starting stage of this medication so I can not tell if it wll make a difference. I used to hurt a lot but the body pain has gone now just te muscle weakness and hand problem is left.
I know from reading other peoples post this illness does not go away overnight, so I am patient and take my meds.
I know you will find lots of helpful people on this site and welcome from me too. If you need any info you can always send me a private e-mail (PM).
Eva:D
Oops: I have been on AP since January 2008, guess time is runing away with
me.Eva;)
Eva Holloway
Dear Alice. I was diagnosed with DM in May. I have a terrible rash in my scalp, on my chest, arms, and upper back. Also, I have lost LOTS of hair! I have been on high doses of predinisone, plaqunil, and currently am still on prednisone and Methotrexate. My muscle weakness is better as long as I stay on prednisone. My rheumy will NOT give me the AP so I'm in the process of finding a new doctor that will follow the protocol! I'd love to hear from you. This is a really good place for info on DM.
Hi Alice,
I was recently diagnosed with DM (September 09) and am meeting w/ an A/P doctor for the first time on 12-14-09. My previous Rheumy told me she wouldn't treat me when I refused to take Metx and asked to be given A/P treatment.
I am seeing Dr. T (from the List of AP doctors), she's in Parma, OH, which is about a 4 hour drive from Cincinnati where I live close to!
I'm 43 and have DM, Sjogren's and Reynauds, also possible Lupus. The only thing that bother me is the DM because of the muscle issues.
What are your main symptoms and have you started any treatment yet. I noticed that you are in Lima? That's northern Ohio isn't it? You should be close to Dr. T also.
If you want to send me a personal message I can give you the info about her that I have. I called her office and told her what I had been diagnosed with and was told that she would be willing to treat me w/ A/P.
Looking forward to hearing from you!
BetsyrI was also diagnosed with Dermatomyositis 2 years ago, I started AP April 2010. Do you still have symptoms or are the antibiotics helping? I have small improvements but not major ones. The thing that is bothering me the most is the loss of muscle and extreme fatigue!
Just wanted to talk to someone that has been through the same thing.
Tonya
Tonya – you might get alot out of reading Eva Holloway's story about her journey in treating DM. She recently fell and broke her hip so, whilst she is back home now, not sure how much she is tuning in to the Forum. She may well chime in. In the meantime, you might like to take a look at her Personal History and Progress thread which is called Eva's Story. Here is the link: http://www.rbfbb.org/view_topic.php?id=2338&forum_id=3&page=1 Lynnie
Be well! Lynnie
Palindromic RA 30 yrs (Chronic Lyme?)
Mino 2003-2008 100mg MWF - can no longer tolerate any tetracyclines
rotating abx protocol now. From Sep 2018 MWF - a.m. Augmentin Duo 440mg + 150mg Biaxsig (roxithromycin). p.m. Cefaclor (375mg) + Klacid 125mg + LDN 3mg + Annual Clindy IV's
Diet: no gluten, dairy, sulphites, low salicylates
Supps: 600mg N-AC BID, 1000mg Vit C, P5P 40mg, zinc picolinate 60mg, Lithium orotate 20mg, Magnesium Oil, Bio-identical hormones (DHEA + Prog + Estrog)I have Dermatomyositis. I was diagnosed with it 1.5 years ago after I had carpal tunnel surgery. What questions do you have that I might be able to help you with. I am currently receiving my 2nd round of AP therapy in 3 months. I had been on the oral mini twice daily for the last 3 months but then broke out in this terrible rash.
Please let me know if I can help you out in anyway.
Julie
Hello troysmom,
when I was in the hospital recently the doctor gave my a lotion for my hands which realy helped a lot , my hands are looking a lot better, “Ammonium Lactate Lotion 12%” I also had Cipro and my hands look almost normal 99%:D. I thought about Troy and maybe it would help him with his hands, it has to be prescriped from the doctor.
Best wishes,
Eva
Eva Holloway
How long were you on the antibiotics before you started to see improvements? I know I am still in the early stages of AP. I am on my 4th month right now but I still have extreme fatigue! Just wondering when and IF it will ever go away.
Tonya
Tonya,
It took me a long time, probably 8 or 9 months, but I was really in bad shape and was to a point were I did not even want to get out of bed anymore unless I had to go to the bathroom and cook something for my family. I finaly was able to do lots more after being on Minoxin and Biaxin for 8 months the skin startet to look better, my hands still had a problem until recently when I had iv Cipro for several days in the hospital. Now they look good, I also have a prescription lotion “Ammonium Lactate lotion 12%” it seems to help a lot., You have to be patient with the antibiotic protocol. The muscle weakness took longer and I asked my doctor to give me LDN (low dose Naltrexon) and after that the muscle weakness started to go away. I still have some in the middle of my body, but it is getting better now. I have not been able to take LDN since I had been in the hospital. They put me on codein medication for the pain and after the surgery for more pain:headbang:. I am down to one codein pill a day and hope to wean off it soon. My hip still hurts some and I know if I don't take at least 1/2 a pill during the day I hurt by 6 pm and have to take a whole pain pill.
You can read my story if you click on the bottom of my e-mail: www…..
Take care and you can always ask more questions when needed.
Eva:D
Eva Holloway
Eva,
Right now I am dealing with muscle weakness and Extreme Fatigue. My energy level is at a 0. Having a hard time doing anything around the house or going anywhere.
Tonya
Tonya,
can you ask your doctor to give you LDN, this helped me a lot last year. I had pictures from when I walked very bend over and then 6 months after I had taken LDN, the difference was very noticable. Another thing to, maybe you need to get some Ensure to help you build up your body again. I never thought to drink it but when I was in the hospital I didn't eat enough and they brought a bottle to every meal. It has helped a little. The muscle weakness is the worst feeling Have you ask your doctor if you can get some upper torso physical therapy? I went to a physical therapy place after I got my script and explained to them what I needed help with and they were great on doing exercises geared to my problem.
Unless your doctor has the muscle testing done, there is nothing else to really help. Sometimes they do IVIG (blood transfusion) that may help you get better to beginn with. It is very expensive and hopefully your insurance will cover that. You may ask your doctor to see if she can change your protocol to another medication or have IV's done like doxy or so. Everybody is different.
Eva:D
Eva Holloway
Eva,
I asked my AP doctor about LDN and he didn't think I was a good candidate at the moment. He suggested I go back to my regular dr. to see if there is something else wrong. She did a blood test and found I have hypothyroidism. I was doing water therapy but had to stop for a while due to fatigue. I've contacted my AP doctor about another round of IVs but haven't heard back. I will also ask about IVIG therapy.
Thanks for all the information!
Tonya
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