It's strange because through all the research I did trying to find what it was I had I never came across dermatomyositis. So When the dermatologist mentioned that is what he believed I had I came home and searched it. I have sooo many of the symptoms. But I do not have muscle involvement nor do I have it on my hands. Neck, face and chest only. I want so desperately to believe this is some form of severe allergy and not DM.
He did not take a biopsy. Only blood work. I wish I would have wrote it down. I remember seeing CK and the Jo-1 and although I've already had an ANA he reordered it again.
The flare returned once I was at 5mg a day. It started with a little itchiness and then pink started showing and now it's back to a full red color.
I'm afraid to take Plaquenil or any other drug for that matter. I had hoped to do this all natural. I'm afraid to go to the appointment tomorrow. I've so desperately wanted to be diagnosed but now that the time has come I feel I just want to be sheltered from it and hide away.
There are so many answers I want, yet none which can be found. Can diet cure this, can it help alleviate the symptoms. Was this bound to happen to me through genetics or was it something I caused? Ughhh. I'm determined to fight this I'm determined to no longer use prednisone and will lose all the weight this drug caused me to gain. I will be happy again.
The big reveal! Photos of my lame-o itchy rash
Moderators: Rosie, Stanz, Jean, CAMary, moremuscle, JFR, Dee, xet, Peggy, Matthew, Gabes-Apg, grannyh, Gloria, Mars, starfire, Polly, Joefnh
Welcome to the board. In your situation (because of the metals involvement), it would take more than just diet changes, because you would have to totally avoid all of your sensitivities, both oral and external, but with meticulous dedication, you should be able to prevent the symptoms from reoccurring. Whether you can eliminate symptoms that are already present without the use of meds, remains to be seen.Ariyuana wrote:There are so many answers I want, yet none which can be found. Can diet cure this, can it help alleviate the symptoms.
In my book, I discuss how most so-called autoimmune diseases are not actually autoimmune at all — in most cases, they're due to inflammation caused by exogenous antigens, and if those exogenous antigens are totally avoided, then the so-called autoimmune reactions cannot occur (thus proving that the reactions are not actually autoimmune in the first place). The problem is that most people in that situation are unable (for various reasons) to totally avoid all of the things to which they are sensitive. Either they are not aware of all of their sensitivities, or they are unable to totally avoid them, due to lifestyle choices. The result is that instead of preventing the inflammation by avoidance, they end up having to resort to the use of medications to treat the inflammation after it is generated. Remember that doctors always treat symptoms — they almost never treat the cause (of any disease).
The bottom line is that preventing reactions without using medications is theoretically doable, but it seems to be extremely difficult for most patients, because of the level of vigil that must be maintained at all times.
Tex
It is suspected that some of the hardest material known to science can be found in the skulls of GI specialists who insist that diet has nothing to do with the treatment of microscopic colitis.
What about a diet that is anti-inflammatory? Along with Immune boosters. Garlic, Mushrooms, Omegas, Green tea, Turmeric, Zinc.. Could I then stay away from prescription drugs?
I'm afraid that if I take any immune suppressors I'll be at susceptible to infections, I'm scared to take Plaquenil for the damage it too causes.
Yes, anti-inflammatory is the goal. However, it can't just be foods that are known to be commonly associated with inflammation in the general population. The diet has to specifically exclude all of the foods to which you personally react. IOW, those foods need to be determined by stool tests designed to detect IgA antibodies to them, and/or by careful trial and error testing while maintaining detailed records (a food/reaction journal or diary). Mediator release testing would also probably be helpful.
Avoiding nickel will be a major problem, because not only is it used as a base metal for plating processes used on buckles, snaps,etc., and alloys in other metals, but it's also found in many foods. And as you are probably aware, many people who are sensitive to nickle are also sensitive to other metals (hence the mercury connection).
Conventional medical thinking blames autoimmune disease on an overactive immune system. But if you look at the factors involved in the initial development of autoimmune-type diseases, it's pretty clear that those diseases are associated with a weakened immune system, typically brought on by a vitamin D deficiency, magnesium deficiency, or similar problems that lead to a weakened immune system.
I share your concerns about intentionally weakening my immune system. Personally, I'm a firm believer in keeping the immune system as strong as possible, not only because of the increased risk of infection that comes with suppression, but also because immunosuppressants increase the risk of developing cancer, allow otherwise slow-growing cancers to grow much more rapidly, and interfere with healing. And I'm probably overlooking a few additional disadvantages.
That said, if you should find yourself an unwilling candidate for an immune system suppressant, it's not the end of the world. Every transplant recipient has to take them for life, and million of people are taking them to suppress the symptoms of various autoimmune diseases, so there are plenty of people who are successfully living with such drugs on a daily basis. The downside is that sometimes they stop working, or cause other problems (or interfere with other issues), and for many of the newer drugs, long-term use may hold unexpected surprises. And at your young age, that's not something that you should be having to deal with, if there is an acceptable alternative solution available that can sidestep those risks.
Remember that doctors are not going to prescribe what's best for you (only you know what's best for you). They are going to prescribe drugs that have been shown to be the most effective for treating the issue or issues under consideration, because they have no training in dietary solutions for anything other than celiac disease and classic allergies that result in anaphylaxis. And they will tend to downplay the risks involved with those drugs, because the only type of treatment they understand, is the use of prescription drugs — that's what they were trained to do. Treatment by diet is not even on their radar, because they had no training in that skill.
Do you know your vitamin D level? The proper test is listed as 25(OH)D (sometimes referred to as 25 hydroxy-D). The other vitamin D test used by some doctors is worthless for our purposes.
Tex
Avoiding nickel will be a major problem, because not only is it used as a base metal for plating processes used on buckles, snaps,etc., and alloys in other metals, but it's also found in many foods. And as you are probably aware, many people who are sensitive to nickle are also sensitive to other metals (hence the mercury connection).
Conventional medical thinking blames autoimmune disease on an overactive immune system. But if you look at the factors involved in the initial development of autoimmune-type diseases, it's pretty clear that those diseases are associated with a weakened immune system, typically brought on by a vitamin D deficiency, magnesium deficiency, or similar problems that lead to a weakened immune system.
I share your concerns about intentionally weakening my immune system. Personally, I'm a firm believer in keeping the immune system as strong as possible, not only because of the increased risk of infection that comes with suppression, but also because immunosuppressants increase the risk of developing cancer, allow otherwise slow-growing cancers to grow much more rapidly, and interfere with healing. And I'm probably overlooking a few additional disadvantages.
That said, if you should find yourself an unwilling candidate for an immune system suppressant, it's not the end of the world. Every transplant recipient has to take them for life, and million of people are taking them to suppress the symptoms of various autoimmune diseases, so there are plenty of people who are successfully living with such drugs on a daily basis. The downside is that sometimes they stop working, or cause other problems (or interfere with other issues), and for many of the newer drugs, long-term use may hold unexpected surprises. And at your young age, that's not something that you should be having to deal with, if there is an acceptable alternative solution available that can sidestep those risks.
Remember that doctors are not going to prescribe what's best for you (only you know what's best for you). They are going to prescribe drugs that have been shown to be the most effective for treating the issue or issues under consideration, because they have no training in dietary solutions for anything other than celiac disease and classic allergies that result in anaphylaxis. And they will tend to downplay the risks involved with those drugs, because the only type of treatment they understand, is the use of prescription drugs — that's what they were trained to do. Treatment by diet is not even on their radar, because they had no training in that skill.
Do you know your vitamin D level? The proper test is listed as 25(OH)D (sometimes referred to as 25 hydroxy-D). The other vitamin D test used by some doctors is worthless for our purposes.
Tex
It is suspected that some of the hardest material known to science can be found in the skulls of GI specialists who insist that diet has nothing to do with the treatment of microscopic colitis.
Hmmm, I'm afraid you probably won't get a definitive diagnosis today, since no biopsies were taken. Normally you need a skin biopsy or muscle biopsy for proof, along with elevated muscle enzymes (CK). They may also look for myositis-specific antibodies (Jo-1, Mi-2, others). My bloodwork was negative for the classic DM markers, meaning my CK and myositis-specific antibodies were all normal. Not surprising since I don't have muscle involvement. But my ANA has been very high for years, along with Rheumatoid Factor and Anti-Smooth Muscle Antibody. But these are not specific for DM. Only my skin biopsy and characteristic rash were. Do you have the heliotrope rash on your eyelids? Mine looks like I'm wearing a line of purple eyeshadow. Lovely.
Regarding the meds, I too was terrified and determined to go all natural. But I've slowly accepted that there is a place for western meds, and they really do help people to stay alive, stay functional, etc. Of course when your disease is just a rash, it seems crazy to reach for immune suppressants, but my rash was eating me up...and I waited too long to get help. Now I have scars on my back to remind me.
I'm often amazed at the number of people on the DM Facebook group who pop in and explain they had juvenile DM, 20, 30, 40 years ago and they're doing fine. Many lived on prednisone, methotrexate etc for decades and were able to get off eventually without dire consequences. There is a dad in Denmark who cured his kids of DM with a whole foods diet and supplements. Yet there are people who went Paleo and it wasn't a magic fix. The triggers for DM are unique for each individual. For me, I know it's related to my bout of mononucleosis (EBV) as a teen, combined with gut dysbiosis, celiac genetics (HLADQ2) and probable heavy metals exposure.
What I do know is that the motivated people, the ones who talk about dietary approaches, the ones off gluten and processed foods, are the ones who seem to have the mildest disease manifestations. I'm convinced if I went back to a standard American diet, my DM would promptly flare, attack my muscles and lungs, etc. So I keep plugging away, hoping to keep this as rash-only or better.
BTW, I've been researching this rash for almost 9 years. You should see the crazy list of differential diagnoses I came up with - at least 20 other conditions were under consideration, and never DM!! Cutaneous lupus, lichen planus, cutaneous mastocytosis, DH, eczema, so many others! I finally came across DM last January and when I mentioned it to my very enlightened integrative medicine doc, showing him I had all the skin manifestations, he looked it up on his PDA and exclaimed "Oh no, I don't think you have DM. That's serious. You don't want that."
It's still considered a very rare disease, although people seem to be getting diagnosed in bigger numbers lately, similar to what we're seeing in MC. Coincidence??
One university near me (George Washington U) just got funding to open a Myositis Center, and Johns Hopkins up the road has the most respected one. Penn State has a dermatology department doing lots of work in DM. Between that and all the work researching Lupus (a close cousin to DM) I think there is hope for some new discoveries soon.
BTW, are you staying away from the sun and fluorescent lighting? They are the worst triggers for the rash. My skin will flare after 5-10 minutes of direct sun.
Regarding the meds, I too was terrified and determined to go all natural. But I've slowly accepted that there is a place for western meds, and they really do help people to stay alive, stay functional, etc. Of course when your disease is just a rash, it seems crazy to reach for immune suppressants, but my rash was eating me up...and I waited too long to get help. Now I have scars on my back to remind me.
I'm often amazed at the number of people on the DM Facebook group who pop in and explain they had juvenile DM, 20, 30, 40 years ago and they're doing fine. Many lived on prednisone, methotrexate etc for decades and were able to get off eventually without dire consequences. There is a dad in Denmark who cured his kids of DM with a whole foods diet and supplements. Yet there are people who went Paleo and it wasn't a magic fix. The triggers for DM are unique for each individual. For me, I know it's related to my bout of mononucleosis (EBV) as a teen, combined with gut dysbiosis, celiac genetics (HLADQ2) and probable heavy metals exposure.
What I do know is that the motivated people, the ones who talk about dietary approaches, the ones off gluten and processed foods, are the ones who seem to have the mildest disease manifestations. I'm convinced if I went back to a standard American diet, my DM would promptly flare, attack my muscles and lungs, etc. So I keep plugging away, hoping to keep this as rash-only or better.
BTW, I've been researching this rash for almost 9 years. You should see the crazy list of differential diagnoses I came up with - at least 20 other conditions were under consideration, and never DM!! Cutaneous lupus, lichen planus, cutaneous mastocytosis, DH, eczema, so many others! I finally came across DM last January and when I mentioned it to my very enlightened integrative medicine doc, showing him I had all the skin manifestations, he looked it up on his PDA and exclaimed "Oh no, I don't think you have DM. That's serious. You don't want that."
It's still considered a very rare disease, although people seem to be getting diagnosed in bigger numbers lately, similar to what we're seeing in MC. Coincidence??
One university near me (George Washington U) just got funding to open a Myositis Center, and Johns Hopkins up the road has the most respected one. Penn State has a dermatology department doing lots of work in DM. Between that and all the work researching Lupus (a close cousin to DM) I think there is hope for some new discoveries soon.
BTW, are you staying away from the sun and fluorescent lighting? They are the worst triggers for the rash. My skin will flare after 5-10 minutes of direct sun.
1987 Mononucleosis (EBV)
2004 Hypomyopathic Dermatomyositis
2009 Lymphocytic Colitis
2010 GF/DF/SF Diet
2014 Low Dose Naltrexone
2004 Hypomyopathic Dermatomyositis
2009 Lymphocytic Colitis
2010 GF/DF/SF Diet
2014 Low Dose Naltrexone
Zizzle wrote:Hey! The system thinks I'm Canadian again. How do I end up on a Canadian IP address from my home computer??
You can't fool them computers — they know all and see all. Tex
It is suspected that some of the hardest material known to science can be found in the skulls of GI specialists who insist that diet has nothing to do with the treatment of microscopic colitis.
Zizzle, you're absolutely right no definitive diagnosis was concluded. My CK ANA & Jo-1 all came back negative. He did two skin biopsy's which get sent to NY and should have the results within a week or two.
I've noticed I don't have any reaction to florescent lights or sun. I actually feel better when I'm out in the sun (when we get it). I have developed dermographia which I've never had. A big part of me hopes this is some sort of severe allergy to something I'm exposed to. I just want answers.
Tex,
My Vitamin D level has been low for sometime. I don't know the exact number I'll have to look through my papers.
Are topical steroids just as dangerous as oral steroids?
I've noticed I don't have any reaction to florescent lights or sun. I actually feel better when I'm out in the sun (when we get it). I have developed dermographia which I've never had. A big part of me hopes this is some sort of severe allergy to something I'm exposed to. I just want answers.
Tex,
My Vitamin D level has been low for sometime. I don't know the exact number I'll have to look through my papers.
Are topical steroids just as dangerous as oral steroids?
Negative ANA is a good sign.
Topical steroids are nowhere near as dangerous as oral steroids. The main risk is thinning of the skin with prolonged use and sun sensitivity. That was my initial treatment until the rash got out of hand.
My Vitamin D level was 17 when this all started (minimum should be 30). I'm up to 41 now, taking 5,000 IU at least every other day.My Vitamin D level has been low for sometime. I don't know the exact number I'll have to look through my papers.
Are topical steroids just as dangerous as oral steroids?
Topical steroids are nowhere near as dangerous as oral steroids. The main risk is thinning of the skin with prolonged use and sun sensitivity. That was my initial treatment until the rash got out of hand.
1987 Mononucleosis (EBV)
2004 Hypomyopathic Dermatomyositis
2009 Lymphocytic Colitis
2010 GF/DF/SF Diet
2014 Low Dose Naltrexone
2004 Hypomyopathic Dermatomyositis
2009 Lymphocytic Colitis
2010 GF/DF/SF Diet
2014 Low Dose Naltrexone
Ariyuana,
Tell us more about your case of MC. Is it LC? How long did you have symptoms before being diagnosed? When did you discover gluten was a problem? Were you tested for celiac disease? (Blood, endoscopy or genetics?) Do you have your MC symptoms under control now through diet changes?
I'm curious because my inegrative medicine doc thinks my DM will clear up once I can heal my gut. I suspect once triggered DM is here to stay, but I want to be hopeful.
Tell us more about your case of MC. Is it LC? How long did you have symptoms before being diagnosed? When did you discover gluten was a problem? Were you tested for celiac disease? (Blood, endoscopy or genetics?) Do you have your MC symptoms under control now through diet changes?
I'm curious because my inegrative medicine doc thinks my DM will clear up once I can heal my gut. I suspect once triggered DM is here to stay, but I want to be hopeful.
1987 Mononucleosis (EBV)
2004 Hypomyopathic Dermatomyositis
2009 Lymphocytic Colitis
2010 GF/DF/SF Diet
2014 Low Dose Naltrexone
2004 Hypomyopathic Dermatomyositis
2009 Lymphocytic Colitis
2010 GF/DF/SF Diet
2014 Low Dose Naltrexone
That's the hope, but so far, this rash seems to have a mind of its own. Many people have developed DM while trying paleo and elimination diets. I had it before MC, it went away for several years for no reason, and it flared again a couple years after eliminating most of my problem foods, so go figure.Can't you go into remission for a long time? As long as you are careful about gluten and other food sensitivities?
1987 Mononucleosis (EBV)
2004 Hypomyopathic Dermatomyositis
2009 Lymphocytic Colitis
2010 GF/DF/SF Diet
2014 Low Dose Naltrexone
2004 Hypomyopathic Dermatomyositis
2009 Lymphocytic Colitis
2010 GF/DF/SF Diet
2014 Low Dose Naltrexone
UPDATE:
Saw the rheumy today. He wants me to slow the prednisone taper now to 1 mg per month. I was doing 2.5 mgs every 2 weeks until I got to 10 mgs. I think I may cheat and taper 1 mg every 2 weeks until I get to 7 or 6, assuming no flares. I still have a stubborn rash on one shoulder, and he suggested I use my Clobetasol steroid cream on it, 2 weeks on, 2 weeks off. I told him I dropped my Plaquenil dose to an "eye-safe" dose of 300 mgs/day (based on height and weight - recommended by my opthamologist) and he was fine with it.
I asked him if they ever look for underlying infections or triggers, and he basically said there is no point, because there is no good evidence that any one particular infection can trigger DM, especially since I don't have other symptoms (neurologic, joint pain, knee sweeling in Lyme? etc). He said multiple infections and environmental triggers have been implicated, and genetic predisposition is required. Of course I forgot to ask if any specific genes have been indentified as predisposing to DM. He said he still suspects some potential for Lupus overlap in my case, but my lack of joint pains and lupus antibodies is a promising sign.
He did a bunch of blood tests to look for drug toxicity (CBC, chem panel, CK for muscles, not sure what else). He wanted to check my Vit D level but was concerned insurance wouldn't cover it (I last had it in November). I felt it wasn't necessary since I'm taking 5,000IU/day and had a respectable level in the 40s last time.
Finally, regarding sun exposure (probably the hardest part of this stupid disease), when I told him I've had a few episodes of 5-10 minute sun exposure on my chest, face or shoulders which results in a red, sunburn-like rash, he said that's expected with sun sensitivity, especially being on Plaquenil, and with thinner skin from Prednisone. He said it's not necessarily DM rash or a DM flare, so long as it goes away in a couple of days, which is does. Phew.
Saw the rheumy today. He wants me to slow the prednisone taper now to 1 mg per month. I was doing 2.5 mgs every 2 weeks until I got to 10 mgs. I think I may cheat and taper 1 mg every 2 weeks until I get to 7 or 6, assuming no flares. I still have a stubborn rash on one shoulder, and he suggested I use my Clobetasol steroid cream on it, 2 weeks on, 2 weeks off. I told him I dropped my Plaquenil dose to an "eye-safe" dose of 300 mgs/day (based on height and weight - recommended by my opthamologist) and he was fine with it.
I asked him if they ever look for underlying infections or triggers, and he basically said there is no point, because there is no good evidence that any one particular infection can trigger DM, especially since I don't have other symptoms (neurologic, joint pain, knee sweeling in Lyme? etc). He said multiple infections and environmental triggers have been implicated, and genetic predisposition is required. Of course I forgot to ask if any specific genes have been indentified as predisposing to DM. He said he still suspects some potential for Lupus overlap in my case, but my lack of joint pains and lupus antibodies is a promising sign.
He did a bunch of blood tests to look for drug toxicity (CBC, chem panel, CK for muscles, not sure what else). He wanted to check my Vit D level but was concerned insurance wouldn't cover it (I last had it in November). I felt it wasn't necessary since I'm taking 5,000IU/day and had a respectable level in the 40s last time.
Finally, regarding sun exposure (probably the hardest part of this stupid disease), when I told him I've had a few episodes of 5-10 minute sun exposure on my chest, face or shoulders which results in a red, sunburn-like rash, he said that's expected with sun sensitivity, especially being on Plaquenil, and with thinner skin from Prednisone. He said it's not necessarily DM rash or a DM flare, so long as it goes away in a couple of days, which is does. Phew.
1987 Mononucleosis (EBV)
2004 Hypomyopathic Dermatomyositis
2009 Lymphocytic Colitis
2010 GF/DF/SF Diet
2014 Low Dose Naltrexone
2004 Hypomyopathic Dermatomyositis
2009 Lymphocytic Colitis
2010 GF/DF/SF Diet
2014 Low Dose Naltrexone
