Dermatomyositis started after injury

[Kathyp]

Dx with Dermatomyositis 1 year ago. This occurred after I injured both knees. Over course of summer noticed knees were not getting better and one started to get worse. When hands became effected I went to rheumy and was dx. I had been ANA pos. For years with other skin conditions, but was having no skin or joint problems and healthy till knee injury. I worry that since my DM was sparked by injury,it mat not respond to antibiotics. Has anyone else had a similar experience?

[Maz]

Hi Kathy,

You might be interested to read Katherine’s (director of this foundation) story – her RA onset arose on the heels of an injury, too. She got to remission on AP, studied for her doctorate in sciences, and wrote “The Infection Connection.”

Joint Trauma and the Onset of Arthritis

Numerous people have reported here that their rheumatic disease started after a significant life stressor (surgery, illness, death of a loved one, car accident/injury, etc.). So, there is every hope that the treatment could work for you, too.

I spoke by phone and email with a gent for a year when his wife became very ill with DM. She was hospitalized and failing on the medications she was prescribed. By using, low, pulsed doses of brand name Minocin, good quality probiotics and some other helpful supplements, plus regular gentle exercise (swimming) and careful diet (autoimmune paleo diet aka AIP), she was able to achieve remission in one year and tapered off all her other meds. Prednisone was the hardest to taper from and towards the end of her first year on AP, she had a significant skin eruption after stopping the prednisone entirely, but within a month or so was in full remission and, as far as I know, she has remained well and continues her AP and full health regimen. In other words, it can be done, but requires a good deal of self-advocacy and the road can be a bit up and down along the way. I was hoping this gent would have his wife write her remission story for the website as few DM patients visit here and it’s a less common disease type as compared to RA.

Everybody’s road back is unique and depends on lots of individual variables (current meds, co-morbidities, lifestyle habits, hormones, age, disease severity/duration – even generic minocycline types can affect success), but if you hang around here, ask questions and read the posts, familiarize yourself with the site resources, read the Scammell book to understand the therapy rationale (a slow therapy), you’ll pick things up very quickly. It can also help to find a doctor who is supportive of your treatment choice. If you need one, just click on the Resources tab above and you will find a Doctor Search page to see if any are listed near you. There is also a Lyme Literate MD (LLMD) list if there is any history of Lyme or other tickborne infections, and in places where AP docs are few and far between, sometimes an experienced LLMD can help. Overall, though, it just requires a doc with a medical license who is open to helping.

All the best, Kathy!

[whaleharbor]

Kathyp RA started for me after a period of extreme stress and the loss of my Grandfather..who was like my father. I was going to school full time to get a Master’s Degree. I was working full time. My school was 2 hours away from my work. My grandfather was dying and because my grandparents and parents lived together and I was still living at home, I saw the horror first hand every day. In fact, I’d go to bed at night not knowing if I’d be woken up in the middle of the night by an ambulance taking my grandfather to the hospital…it happened over and over and over again. Then my dad was diagnosed with a terminal illness. Then I fell down a flight of stairs and broke my tailbone. When it rains,it pours. Long story short…the RA came on swift and strong. I was taking conventional meds for almost 20 years when I found minocyclne and this website on a fluke. I had worsened and my doctor wanted to put me on meds I wasn’t comfortable with. Long story short, in about a year’s time, I was in remission. I Fast forward 10 years…another very stressful time …not quite as stressful as the first plus a change in the mino generic and voila, it came back with a major vengeance. So…I switched mino brands and reduced stress and again in about a year’s time, I’m almost back to where I was before in remission. So in my case, both injury and stress have led to RA and I’ve come out the other side. I think the stress was just the tipping point on whatever is going on. Good luck and please do keep us posted.

Minocycline 100mg every other day with food...lots of food: Zydus brand. Celecoxib 200mg twice per day: Greenstone brand.

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