I have my chest, abdomen and pelvic CT plus first mammogram at 10:30 tomorrow. Just downed my first bottle of barium for the GI contrast. Taste was OK but it feels like a brick in the stomach. No allergic reactions thankfully...I'd read nickel allergy might mean issues with barium, another metal. Plus the solution is full of sodium benzoate, which I apparently react to, and other artifical sweeeteners, etc, but no gluten. Good time to be on prednisone!
I'm going to the appt alone by choice, walking 4 blocks from my office. I hope I can make it with no D!
I'm finding more DM patients with nickel allergies, many who had their first flare after dental work, crowns, etc. I also learned that systemic nickel allergy results in itchy dermatitis in many of the DM locations... Eyelids, flexures, buttocks, fingers, etc.
Here's a well-written article by a chiropractor that differentiates between mercury toxicity and mercury/metals allergy. I believe I probably don't carry more mercury than the average person, but I think I have a chronic allergic response to it and other metals which = chronic inflammation.
http://www.quantumsecret.com/dental_toxicity.php
I'm going to figure this out...and beat it!! But first, cross your fingers for no malignancies tomorrow.
Started prednisone taper on Christmas Eve. 35 mg for a week, now alternating 35/30 this week. So far, rash is still retreating. Yay!! Can't wait to get down to 20. Upping plaquenil to 2 doses/day after tomorrow. Tolerating both Meds pretty well. I sleep less, bruise more, and my essential/benign tremor is worse, bloating is worse, but no noticeable hunger or weight gain yet.
Hopeful for 2013.
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
Zizzle,
The tests begin less than an hour from now. Best wishes that the scans will rule out any malignancies.
Tex
The tests begin less than an hour from now. Best wishes that the scans will rule out any malignancies.
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.
The scans are complete. The radiologist met with me to talk me into IV contrast for the CT scan, which my doctor hadn't ordered. I figured it's no more radiation, and the prednisone will lessen any potential reactions to the iodine, so I went for it. Now I need to flush ouy my kidneys and digestive tract ASAP, to get the barium and iodine out. I started with a huge salad and green tea. If that doesn't move things along, I'll consider taking magnesium to cause D. Is there any safer MC-friendly laxative that won't have me going all night at new years festivities? Maybe I'll grab some prunes and eat pears and apples when I get home.
The mammogram went well. I opted for the 3-D mammogram which is more sensitive and results in fewer call backs. I saw the pics on the screen and didn't notice any obvious masses. They'll have to more closely examine some areas of dense tissue.
The CT scan will be read today and my rheumy should have the results at my appointment tomorrow. The mammogram could take many days.
Hoping for a happy new year!
The mammogram went well. I opted for the 3-D mammogram which is more sensitive and results in fewer call backs. I saw the pics on the screen and didn't notice any obvious masses. They'll have to more closely examine some areas of dense tissue.
The CT scan will be read today and my rheumy should have the results at my appointment tomorrow. The mammogram could take many days.
Hoping for a happy new year!
I had trouble getting rid of the barium, and it made life miserable for me for several days. I should say more miserable, because I was already sick as a dog when I had the test, including nausea/vomiting. I would think that some of the safe oils might help to speed things along. I didn't try anything though, because it never occurred to me at the time. Since then I've discovered that when I need a quick cleanout, grapes work quite well for that. 
Your doctor is working tomorrow? Kudos to him. Hearing the news that the tests were all negative will be a good way to start the new year.
Tex
Your doctor is working tomorrow? Kudos to him. Hearing the news that the tests were all negative will be a good way to start the new year.
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.
Oops, my appointment is Wednesday, not tomorrow. The reason I made the call on the contrast is because my doctor's office was closed today too. DC is an absolute ghost town today (except for Congress!). All the restaurants and shops are closed, not a food truck in sight. No one parked on the streets either. It's eerie.
I had 2 BMs already thanks to the salad and 2 green teas (Which I'm also drinking for the antioxidant/radiation-protective effects), but they weren't white yet. I'll probably take 1000mg of Vit C when I get home, plus a tablespoon of coconut oil and see what happens. Magnesium sulfate will be my last resort, but I'm not at all uncomfortable.
Happy New Year!
I had 2 BMs already thanks to the salad and 2 green teas (Which I'm also drinking for the antioxidant/radiation-protective effects), but they weren't white yet. I'll probably take 1000mg of Vit C when I get home, plus a tablespoon of coconut oil and see what happens. Magnesium sulfate will be my last resort, but I'm not at all uncomfortable.
Happy New Year!
I thought that congress was inhabited by ghosts year-around — after all, nothing realistic ever happens there.Zizzle wrote:DC is an absolute ghost town today (except for Congress!).
Yep, you'll notice when the barium decides to exit.
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.
Good news!!! 
My CT scan was largely normal. No suspected malignancies. They did find a few ovarian cysts and free fliud in the pelvis, and one of those cysts was 2.4 cm with a think and irregular wall, so I have to go back for a pelvic sonogram. They suspect it's a collapsing follicle cyst, but they can't rule out something more sinister. Interesting that I have no discomfort from it. They also found a few "tiny" (sub-6mm) "noncalcified ovoid nodular appearing juxtapleural densities" in my lungs (a.k.a. lung nodules). Since I've never smoked, they are thought to be insignificant and commonly seen in CTs of healthy lungs. Since my diagnosis does come with a risk of interstitial lung disease, I'll need a repeat chest CT in a few years to monitor any changes.
My Myositis-Specific Antibodies also came back negative!! 12 of them! My doc said that's not uncommon, but it does mean a less aggressive disease course. Phew! I asked if there was any chance I don't have Dermatomyositis, and he said no, because my skin biopsy was pretty conclusive.
They drew more blood and checked urine today, and I don't have to go back for another 6 weeks. Of course I have to get the ultrasound and another eye exam, not to mention get my 2 fillings out, and anxiously await my mammogram results, so the journey continues...
I'm alternating 35/30 prednisone this week, next week I will drop to 30 for a week, then 30/25 the following week. Can't wait to get under 20 mgs! Although I'm loving this vacation from MC!
My CT scan was largely normal. No suspected malignancies. They did find a few ovarian cysts and free fliud in the pelvis, and one of those cysts was 2.4 cm with a think and irregular wall, so I have to go back for a pelvic sonogram. They suspect it's a collapsing follicle cyst, but they can't rule out something more sinister. Interesting that I have no discomfort from it. They also found a few "tiny" (sub-6mm) "noncalcified ovoid nodular appearing juxtapleural densities" in my lungs (a.k.a. lung nodules). Since I've never smoked, they are thought to be insignificant and commonly seen in CTs of healthy lungs. Since my diagnosis does come with a risk of interstitial lung disease, I'll need a repeat chest CT in a few years to monitor any changes.
My Myositis-Specific Antibodies also came back negative!! 12 of them! My doc said that's not uncommon, but it does mean a less aggressive disease course. Phew! I asked if there was any chance I don't have Dermatomyositis, and he said no, because my skin biopsy was pretty conclusive.
They drew more blood and checked urine today, and I don't have to go back for another 6 weeks. Of course I have to get the ultrasound and another eye exam, not to mention get my 2 fillings out, and anxiously await my mammogram results, so the journey continues...
I'm alternating 35/30 prednisone this week, next week I will drop to 30 for a week, then 30/25 the following week. Can't wait to get under 20 mgs! Although I'm loving this vacation from MC!
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Sheila
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Wow, Zizzle, that's great news. I hope all the rest of your tests are negative and you get some well deserved peace. Please keep us informed. I know there are many of us who are very concerned about you and wish you well.
Sheila W
Sheila W
To get something you never had, you have to do something you never did.
A person who never made a mistake never tried something new. Einstein
A person who never made a mistake never tried something new. Einstein
I've just spent the first half of my morning reading this entire thread. 
I know I don't know you Zizzle, but I "feel" as though I do. Have there been any more updates? Your last post was in January, and I'm wondering about the additional tests you've taken.
I'm 29, born in CA and recently moved to WA. I can relate to your angry red rash, although mine is on my face and neck (extremely itchy and burns like no tomorrow) . My rash began one month after removing my amalgam fillings and switching to composites. (I still have one deteriorating amalgam filling that needs to be removed).
It began on my right forehead and spread over months from there. This was 4/2011.
I have gone to GP, to an allergist, dermatology and the University Of WA located in Seattle and no one could diagnose me. Although, the University did a patch test and found I have a Nickel allergy. I also have a history of eczema and allergies and initially thought I had an allergy due to climbing one of the mountains here. I changed soaps, purchased two air purifiers, changed bedding, cleaned aggressively etc. etc. nothing helped. I started juicing after watching "Fat sick and nearly dead" and the rash got worse. I then went gluten free and it helped a little. I was put on steroids 50mg for over three months and gained 35lbs
Finally, a year later a new dermatologist said last week he believed I have dermatomyositis. They received my results last week and when I called to get them they stated the Dr. doesn't want to go over the results with me over the phone that he'd like to sit and talk to me.
Over the course of this year I have had multiple staph infections, shingles, respiratory infections etc. I am a firm believer that this is due to the prednisone.
I'm not sure what will happen Monday when I go in for results but you posts give me hope. I haven't met anyone that can relate to me as much as you have through reading your posts. I hope all is well and that you have found comfort. For me, I feel a rollercoaster of emotions some days I feel I'm going to find a cure while others I want to hide away in my room and scratch myself to a deep sleep for a month.
I know I don't know you Zizzle, but I "feel" as though I do. Have there been any more updates? Your last post was in January, and I'm wondering about the additional tests you've taken.
I'm 29, born in CA and recently moved to WA. I can relate to your angry red rash, although mine is on my face and neck (extremely itchy and burns like no tomorrow) . My rash began one month after removing my amalgam fillings and switching to composites. (I still have one deteriorating amalgam filling that needs to be removed).
It began on my right forehead and spread over months from there. This was 4/2011.
I have gone to GP, to an allergist, dermatology and the University Of WA located in Seattle and no one could diagnose me. Although, the University did a patch test and found I have a Nickel allergy. I also have a history of eczema and allergies and initially thought I had an allergy due to climbing one of the mountains here. I changed soaps, purchased two air purifiers, changed bedding, cleaned aggressively etc. etc. nothing helped. I started juicing after watching "Fat sick and nearly dead" and the rash got worse. I then went gluten free and it helped a little. I was put on steroids 50mg for over three months and gained 35lbs
Finally, a year later a new dermatologist said last week he believed I have dermatomyositis. They received my results last week and when I called to get them they stated the Dr. doesn't want to go over the results with me over the phone that he'd like to sit and talk to me.
Over the course of this year I have had multiple staph infections, shingles, respiratory infections etc. I am a firm believer that this is due to the prednisone.
I'm not sure what will happen Monday when I go in for results but you posts give me hope. I haven't met anyone that can relate to me as much as you have through reading your posts. I hope all is well and that you have found comfort. For me, I feel a rollercoaster of emotions some days I feel I'm going to find a cure while others I want to hide away in my room and scratch myself to a deep sleep for a month.
Hi Ariyuana! Welcome!!!
We sure do have a lot in common. How did you find the Potty People? Do you also have MC or did an Internet search lead you to this thread? I'm sorry about the impending DM diagnosis, if that's what it's gonna be. It'll mean lots of follow up tests, but I am a firm believer that the disease is not as bad as what you read online. Many of us with skin-rash only DM probably never get properly diagnosed. There is a great closed support group on Facebook that is worth joining. Lots of very sick people there, but success stories too, especially people on healthy diets like we aspire to here.
I'm doing very well. I'm tapering down to 10 mgs of prednisone next week and I'm taking Plaquenil. My rash is still under control except for a small patch on my shoulder and some red forehead rashes if I get too much sun. I had my last 2 amalgams removed 2 weeks ago, taking vit c and chlorella for several days to catch any mercury in the process. So far, no issues.
Do you have other signs of DM? Red/purple knuckles or gottron's papules?
I'm so sorry you may have this, but I'm convinced there is so much we can do to keep this disease under control. I know it's scary, but don't lose hope!
We sure do have a lot in common. How did you find the Potty People? Do you also have MC or did an Internet search lead you to this thread? I'm sorry about the impending DM diagnosis, if that's what it's gonna be. It'll mean lots of follow up tests, but I am a firm believer that the disease is not as bad as what you read online. Many of us with skin-rash only DM probably never get properly diagnosed. There is a great closed support group on Facebook that is worth joining. Lots of very sick people there, but success stories too, especially people on healthy diets like we aspire to here.
I'm doing very well. I'm tapering down to 10 mgs of prednisone next week and I'm taking Plaquenil. My rash is still under control except for a small patch on my shoulder and some red forehead rashes if I get too much sun. I had my last 2 amalgams removed 2 weeks ago, taking vit c and chlorella for several days to catch any mercury in the process. So far, no issues.
Do you have other signs of DM? Red/purple knuckles or gottron's papules?
I'm so sorry you may have this, but I'm convinced there is so much we can do to keep this disease under control. I know it's scary, but don't lose hope!
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
Sigh, hubby and I got glutened at a restaurant for the first time in ages. The unmistakable gluten D and gurgles are back. And he's passed out on the couch with a headache and malaise, right before his birthday dinner!! It'll be interesting to see what this first glutening does to my rash...
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
Both actually. Was searching for dermatomyositis specifically when I found your post. I noticed when I'm taking 20mg+ of Prednisone there is no rash. I've just completely tapered off prednisone all together and I'm completely flared once again. Ah, I just want Monday to be here already.
Thank you for replying. Means a lot.
Thank you for replying. Means a lot.
I've just completely tapered off prednisone all together and I'm completely flared once again.
How long did you take to taper down from 50 mgs prednisone? I started at 40 mgs, tapering 5 mgs every 2 weeks until I reached 15 mgs. I'm tapering 2.5 mgs every 2 weeks now and I'll taper 1 mg at a time when I'm under 7.5, I think. Your flare returned when you were under 20 mgs, or only when you were off pred? My doc said getting below 5 mgs may be tough, since it requires your body to start making it again (your body produces 5 mgs of cortisol/day).
If the diagnosis turns out to be DM, they will probably offer you Plaquenil, which is supposed to be really effective for the rash, although it can take seveval months to start working. A steroid cream like clobetasol should help too. Protopic can also be effective.
If you ever develop muscle involvement with DM, then they start talking scarier meds like methotrexate, Cellcept, IVIG, etc, but plaquenil seems pretty mild. I have no side effects at all.
I'm assuming they did a skin biopsy? Make sure you get a copy of the biopsy results before you leave the appointment. You'll want to refer to it later, especially if you see other doctors. Please be sure to post the results. Mine said it was "Interface vacuolar dermatitis" which can happen in a couple other conditions, but combined with all my clinical signs (the hands, the locations of the rash, the itching, the autoantibodies), the DM diagnosis was clear.
Good luck tomorrow!
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