Hello:
I came down with a skin condition called dermatographia uticaria. It's whenever something touches your skin you get a red itchy rash at the site. It goes away on it's own, but then is replaced by other rashes. The rashes are sometimes very painful and have a burning sensation. I researched it a little and the term mast cells came up.
Does anyone know about how this mechanism might apply? Has anyone else experienced this? Could this be related to MC in remission? I tried prednisone and couldn't tolerate it, so now I'm on a perscription antihistamine and topical lotion.
Thanks!
Alice
new skin condition and mast cells?
Moderators: Rosie, Stanz, Jean, CAMary, moremuscle, JFR, Dee, xet, Peggy, Matthew, Gabes-Apg, grannyh, Gloria, Mars, starfire, Polly, Joefnh
Hi Alice,
Sorry to hear about this new problem to deal with. Zizzle should be able to provide some pointers on this. Hopefully she will see your post and respond.
It's definitely a mast cell issue. Based on my research when writing the book on vitamin D, my recommendation would be to take plenty of vitamin D. It turns out that (in my opinion), corticosteroids work to suppress inflammation by suppressing mast cell numbers and activity. But the critical point is that they appear to do this by exploiting vitamin D. IOW, corticosteroids express vitamin D receptors, and it's the vitamin D that actually suppresses the inflammation, rather than the corticosteroids themselves. That implies that corticosteroids are effective primarily because of a synergistic effect that makes vitamin D work better.
Research shows that one of the ways that the immune system limits allergic reactions is associated with this: Mast cells can convert vitamin D into the active form, and and the active form of vitamin D can regulate genes that suppress the production and/or degranulation of mast cells. If that relationship gets out of balance (because of a vitamin D insufficiency, or possibly other causes, such as a kidney problem that limits the conversion of vitamin D into the active form), then the result can be autoimmune-type inflammation.
Tex
Sorry to hear about this new problem to deal with. Zizzle should be able to provide some pointers on this. Hopefully she will see your post and respond.
It's definitely a mast cell issue. Based on my research when writing the book on vitamin D, my recommendation would be to take plenty of vitamin D. It turns out that (in my opinion), corticosteroids work to suppress inflammation by suppressing mast cell numbers and activity. But the critical point is that they appear to do this by exploiting vitamin D. IOW, corticosteroids express vitamin D receptors, and it's the vitamin D that actually suppresses the inflammation, rather than the corticosteroids themselves. That implies that corticosteroids are effective primarily because of a synergistic effect that makes vitamin D work better.
Research shows that one of the ways that the immune system limits allergic reactions is associated with this: Mast cells can convert vitamin D into the active form, and and the active form of vitamin D can regulate genes that suppress the production and/or degranulation of mast cells. If that relationship gets out of balance (because of a vitamin D insufficiency, or possibly other causes, such as a kidney problem that limits the conversion of vitamin D into the active form), then the result can be autoimmune-type inflammation.
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.
Hi Alice,
Just saw this. Sorry you have developed another problem. Yes, I agree with Tex - it is likely a mast cell issue. So the antihistamine should help - it may take larger doses than usual, but your doc can monitor that.
Both Zizzle and Mary Beth have extensive experience with mast cells. I'm sure they would be happy to help if you send them a PM.
Best wishes for a quick recovery.
Love,
Polly
Just saw this. Sorry you have developed another problem. Yes, I agree with Tex - it is likely a mast cell issue. So the antihistamine should help - it may take larger doses than usual, but your doc can monitor that.
Both Zizzle and Mary Beth have extensive experience with mast cells. I'm sure they would be happy to help if you send them a PM.
Best wishes for a quick recovery.
Love,
Polly
Blessed are they who can laugh at themselves, for they shall never cease to be amused.
mast cells
Tex and Polly,
Thank you so much for your speedy replies! I don't have a scientific mind like you do, so I need help figuring things out! I'll definitely talk to Mary Beth and Zizzle. Right now I'm on a low dose (2.5 mg daily) of levocetirizine. I looked it up in my pill book and that's a child's dose. I am questioning in my mind if that is sufficient. The itching and pain have lessened but the rash is still present. I've only been on it for 3 days, though.
Alice
Thank you so much for your speedy replies! I don't have a scientific mind like you do, so I need help figuring things out! I'll definitely talk to Mary Beth and Zizzle. Right now I'm on a low dose (2.5 mg daily) of levocetirizine. I looked it up in my pill book and that's a child's dose. I am questioning in my mind if that is sufficient. The itching and pain have lessened but the rash is still present. I've only been on it for 3 days, though.
Alice
Hi Alice,
So sorry you are dealing with this. I am the queen of rashes, although I'm thankfully in remission right now due to Low Dose Naltrexone (which you might wan to look into). My Mother-in-law and a friend both have chronic urticaria and angioedema. My brother-in-law seems to have inherited it too. What my MIL and friend have in common is Hashimoto's Thyroiditis. I've done lots of research for them, and it seems in some cases, removal of the thyroid cures the hives (but neither one is willing to do that). So instead they take Allegra PLUS Zyrtec (sometimes a double dose - don't know how they function). They have also used Doxepin and Cyclosporine when the hives were really bad. My MIL takes prednisone to calm flares, usually a short course at 20 mgs and a quick taper, sometimes a long-term course at 5 mgs.
For them, hive triggers are heat, pressure, stress, allergens, and something related to their thyroid or thyroid antibodies.
My MIL also has Mastocytic Enterocolitis, which was only found because I insisted they do the special stain on her colonoscopy biopsies. The treatment given is Zantac, although I wish she would pursue Cromolyn Sodium (Gastrocrom), a mast cell stabilizer.
As far as my rash, it's autoimmune inflammation of the capillaries and small blood vessels, so not hives. I do have a life-long history of dermographia (skin writing), nickel allergy, and sensitivity to my own sweat, so I know mast cells are involved, but I don't get much relief from antihistamines.
I am careful to avoid chemicals in all my skin and beauty products. I only use a homemade body butter on my skin which is 95% coconut oil, and some jojoba and olive oil, sometimes with essential oils like frankincense (anti-inflammatory). My makeup, shampoos, etc are all chemical free and gluten free.
I hope you get some relief soon!
So sorry you are dealing with this. I am the queen of rashes, although I'm thankfully in remission right now due to Low Dose Naltrexone (which you might wan to look into). My Mother-in-law and a friend both have chronic urticaria and angioedema. My brother-in-law seems to have inherited it too. What my MIL and friend have in common is Hashimoto's Thyroiditis. I've done lots of research for them, and it seems in some cases, removal of the thyroid cures the hives (but neither one is willing to do that). So instead they take Allegra PLUS Zyrtec (sometimes a double dose - don't know how they function). They have also used Doxepin and Cyclosporine when the hives were really bad. My MIL takes prednisone to calm flares, usually a short course at 20 mgs and a quick taper, sometimes a long-term course at 5 mgs.
For them, hive triggers are heat, pressure, stress, allergens, and something related to their thyroid or thyroid antibodies.
My MIL also has Mastocytic Enterocolitis, which was only found because I insisted they do the special stain on her colonoscopy biopsies. The treatment given is Zantac, although I wish she would pursue Cromolyn Sodium (Gastrocrom), a mast cell stabilizer.
As far as my rash, it's autoimmune inflammation of the capillaries and small blood vessels, so not hives. I do have a life-long history of dermographia (skin writing), nickel allergy, and sensitivity to my own sweat, so I know mast cells are involved, but I don't get much relief from antihistamines.
I am careful to avoid chemicals in all my skin and beauty products. I only use a homemade body butter on my skin which is 95% coconut oil, and some jojoba and olive oil, sometimes with essential oils like frankincense (anti-inflammatory). My makeup, shampoos, etc are all chemical free and gluten free.
I hope you get some relief soon!
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
Thanks so much, Zizzle. The nurse practitioner who I first saw about my rash didn't know what it was. She perscribed 60 mg. of pred for 3 days, then tapering down bit by bit - I don't remember what the final dose was. My dermatologist, when I could finally get an appointment, diagnosed it and said 60 mg. was way too high. I was in a manic state for at least 4 days - a danger to myself and others-, even though I quit after 3 days. I quit the pred at 40 mg.
From what you said about your MIL it sounds like 10 or 5 mg. a day would have been the correct dose.
Alice
From what you said about your MIL it sounds like 10 or 5 mg. a day would have been the correct dose.
Alice
Alice,
10 or 5 mg may not stop the rash completely, 20 will. I took long-term prednisone starting at 40 mgs for 2 months. It was not fun. You should never quit prednisone suddenly...it can cause an adrenal crisis. Luckily you hadn't been on it long, but you must always taper.
BTW, you should look up the organizations for mastocytosis. Some people make a Masto-cream with cromolyn sodium. You can buy it as a nasal spray OTC (Nasalcrom), but there might be other forms.
10 or 5 mg may not stop the rash completely, 20 will. I took long-term prednisone starting at 40 mgs for 2 months. It was not fun. You should never quit prednisone suddenly...it can cause an adrenal crisis. Luckily you hadn't been on it long, but you must always taper.
BTW, you should look up the organizations for mastocytosis. Some people make a Masto-cream with cromolyn sodium. You can buy it as a nasal spray OTC (Nasalcrom), but there might be other forms.
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
-
Gabes-Apg
- Emperor Penguin
- Posts: 8330
- Joined: Mon Dec 21, 2009 3:12 pm
- Location: Hunter Valley NSW Australia
Here in Aus, The Sodium Chromoglycate is available as a capsule to be taken orally, it is only available via the compounding chemist
it has the same active ingredient as the nasal spray/eye drops.
do you have a compounding pharmacy near by? ask them if they can make up the cream
The tablets are for people that have histamine/mast cell issues to block Salicylate Sensitivity and food allergies
i have tried the tablets, but since i have balanced the histamine issues with magnesium, Vit C, Zinc, i found the sodium chromolycate tabs made me constipated for 3 days.
it has the same active ingredient as the nasal spray/eye drops.
do you have a compounding pharmacy near by? ask them if they can make up the cream
The tablets are for people that have histamine/mast cell issues to block Salicylate Sensitivity and food allergies
i have tried the tablets, but since i have balanced the histamine issues with magnesium, Vit C, Zinc, i found the sodium chromolycate tabs made me constipated for 3 days.
Gabes Ryan
"Anything that contradicts experience and logic should be abandoned"
Dalai Lama
"Anything that contradicts experience and logic should be abandoned"
Dalai Lama
Zizzle and Gabe:
Thanks so much for your suggestions! My dermatologist perscribed a lotion which I almost didn't buy because it was $80, and that was after my insurance paid $200 something! But my husband urged me to try it and it has helped. The cream I tried before that (perscription also) just made the rash worse because I had to rub it in more.
I'll definitely look into the Masto lotion for when the high priced brand is used up. I put it on once or twice a day, and I'm currently using it only for the worst areas: my neck and upper chest.
Alice
Thanks so much for your suggestions! My dermatologist perscribed a lotion which I almost didn't buy because it was $80, and that was after my insurance paid $200 something! But my husband urged me to try it and it has helped. The cream I tried before that (perscription also) just made the rash worse because I had to rub it in more.
I'll definitely look into the Masto lotion for when the high priced brand is used up. I put it on once or twice a day, and I'm currently using it only for the worst areas: my neck and upper chest.
Alice
Hi Zizzle!
It's called Desonide lotion, .05%. I got 4 fl oz. per Dr. script.
I wish I had the option to buy a smaller quantity, because I only use a little and it's so expensive. My rash is fading and I'm hoping to get to the point where it's totally gone. Nobody has mentioned stress as a contributing factor with this skin condition, but it's interesting that I came down with it during a very stressful time.
Alice
It's called Desonide lotion, .05%. I got 4 fl oz. per Dr. script.
I wish I had the option to buy a smaller quantity, because I only use a little and it's so expensive. My rash is fading and I'm hoping to get to the point where it's totally gone. Nobody has mentioned stress as a contributing factor with this skin condition, but it's interesting that I came down with it during a very stressful time.
Alice
It's a steroid cream. Keep in mind that it thins the skin and could cause the rash to rebound worse when you stop. You should not apply for long periods of time or for large areas of your body. At some point, if your rash is widespread, oral steroids may be advised (instead of covering yourself in steroid creams).
Personally I reacted to most steroid creams I was prescribed. They made my skin redder, tight and painful. Thankfully you're getting some relief, but don't consider this a permanent solution.
And keep in mind you are absorbing the steroid, so you may get some systemic steroid side effects.
Personally I reacted to most steroid creams I was prescribed. They made my skin redder, tight and painful. Thankfully you're getting some relief, but don't consider this a permanent solution.
And keep in mind you are absorbing the steroid, so you may get some systemic steroid side effects.
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
Creams are definitely preferable to oral pred.