Just Dermatographism or MCAS?

[Galixie]

A couple of weeks ago, the back of my shoulders started feeling itchy and tight. The itchiness progressed to my neck, chest, face, arms, and legs over the next couple of days. The worst day also included a bad sinus headache and probably the worst heartburn I've ever had. (It was so painful I started hyperventilating.) A day or so later, the muscles in my upper back, where the itchiness had started, became very sore.

It all seemed a bit like an allergic reaction to me, so I went to an allergist. We didn't find any new allergies, but I do have dermatographism. The allergist didn't know what to make of the symptoms I listed that were not skin-related. In her view it is idiopathic dermatographism which may or may not clear up on its own. She recommended over the counter allergy medication and avoiding lotions/soaps/detergents with fragrances.

I've been extra tired since it started, even when I haven't taken antihistamines. I suspect it is MCAS and I'm wondering what to do now.

She tested for dermatographism by scratching an X on my arm and waiting a few minutes. The area all around the X became red and the X itself puffed right up. I don't have a picture of that. This picture is how it looked two hours after I'd been scratched and after they had applied a cream to it to calm the reaction down. I could actually still see the X 12 hours after the test was done, but it was gone by the next day.

 

[junkcrap50]

My CFS doctor believes that dermographia is indicative of MCAS. And your dermographism seems to be fairly bad, above average.

 

[Gingergrrl]

I suspect it is MCAS and I'm wondering what to do now.

I would agree with you because you have listed many symptoms in addition to dermatographism. Have you been able to identify anything that triggers the reactions (certain foods, medications, smells/odors, temperature changes, etc)? Also, did your allergist only test you for IgE allergies or for histamine, prostaglandins, tryptase, chromograin A, or other mast cell markers?

 

[Galixie]

I would agree with you because you have listed many symptoms in addition to dermatographism. Have you been able to identify anything that triggers the reactions (certain foods, medications, smells/odors, temperature changes, etc)? Also, did your allergist only test you for IgE allergies or for histamine, prostaglandins, tryptase, chromograin A, or other mast cell markers?

I don't know the trigger. I'm not allergic to trees, but we did have a couple of dry, sunny weeks where every tree in the area suddenly flowered. I had initially thought the reaction was related to that, but I'm not sure. Hot water definitely makes it worse, but I don't think it triggers the initial reaction.

I don't have a copy of the lab work yet, but I know she ran a standard FBC along with liver and kidney function tests. My results all came back normal. I don't think she tested for anything else, but I won't know until I get my copy of the report.

When the nurse called me to tell me that my results were normal, I asked if they wanted to run any additional tests. She said no. They seem to be satisfied with the 'idiopathic dermatographism' diagnosis and aren't interested in doing any other tests.

 

[Galixie]

My CFS doctor believes that dermographia is indicative of MCAS. And your dermographism seems to be fairly bad, above average.

What makes it above average? I had been thinking that I'm lucky that my symptoms were not life threatening. I had assumed my case was mild.

 

[valentinelynx]

If you can spare $15-$20, this makes fascinating reading, even if you don't have MCAS: Never Bet Against Occam: Mast Cell Activation Disease and the Modern Epidemics of Chronic Illness and Medical Complexity Kindle Edition by Lawrence B. Afrin M.D. (Author)

 

[junkcrap50]

What makes it above average? I had been thinking that I'm lucky that my symptoms were not life threatening. I had assumed my case was mild.

Just the dermographia. Well, because you said it was raised and not just red. Also, that it lasted 12 hours even after applying a cream (hydrocortisone?) to calm the reaction down.

 

[Galixie]

Just the dermographia. Well, because you said it was raised and not just red. Also, that it lasted 12 hours even after applying a cream (hydrocortisone?) to calm the reaction down.

Ah, that makes sense. I assume the cream was hydrocortisone. I wasn't actually told. My skin seems to heal a little slowly in general. I think that's caused by the fludrocortisone I take. I was surprised that the X lasted so long though.

 

[Galixie]

If you can spare $15-$20, this makes fascinating reading, even if you don't have MCAS: Never Bet Against Occam: Mast Cell Activation Disease and the Modern Epidemics of Chronic Illness and Medical Complexity Kindle Edition by Lawrence B. Afrin M.D. (Author)

Thank you for the link. It does sound interesting. Unfortunately my brain fog has been made worse by the combo of the reaction plus the antihistamines. I can't comprehend anything that in depth right now.

 

[Blake2e]

A couple of weeks ago, the back of my shoulders started feeling itchy and tight. The itchiness progressed to my neck, chest, face, arms, and legs over the next couple of days. The worst day also included a bad sinus headache and probably the worst heartburn I've ever had. (It was so painful I started hyperventilating.) A day or so later, the muscles in my upper back, where the itchiness had started, became very sore.

It all seemed a bit like an allergic reaction to me, so I went to an allergist. We didn't find any new allergies, but I do have dermatographism. The allergist didn't know what to make of the symptoms I listed that were not skin-related. In her view it is idiopathic dermatographism which may or may not clear up on its own. She recommended over the counter allergy medication and avoiding lotions/soaps/detergents with fragrances.

I've been extra tired since it started, even when I haven't taken antihistamines. I suspect it is MCAS and I'm wondering what to do now.

She tested for dermatographism by scratching an X on my arm and waiting a few minutes. The area all around the X became red and the X itself puffed right up. I don't have a picture of that. This picture is how it looked two hours after I'd been scratched and after they had applied a cream to it to calm the reaction down. I could actually still see the X 12 hours after the test was done, but it was gone by the next day.

View attachment 32164

Dermatographism signifies a heavy histamine load which does suggest a mast cell disorder. Run some blood tests to get your answer quick.

• Serum tryptase,
• Serum chromogranin A
• Plasma histamine
• Plasma PGD2
• Plasma heparin
• Urine for PGD2
• PGF2a
• N-methylhistamine

 

[valentinelynx]

Thank you for the link. It does sound interesting. Unfortunately my brain fog has been made worse by the combo of the reaction plus the antihistamines. I can't comprehend anything that in depth right now.

I do understand about the brain fog. If it helps, the book is written in a style appropriate for the layperson. It's kind of like a series of medical mysteries.

 

[Galixie]

On Friday my level of brain fog was so bad it caused some very convoluted thinking.

The allergist had recommended taking a pediatric dose of Xyzal, which is half a tablet, to reduce the itching. By the third day I realized that dose was too low for me. In my fog, I reasoned that I needed to go one more day on the half tablet because I still had a half tablet to use. My befuddled thinking was telling me that, if I didn't do it that way, I'd have to cut up the next pill so that I could match the existing half with half of the next pill to get a full dose. It was a few hours later that it dawned on me that I could've just set aside the half tablet and taken a full dose instead. When I realized how messed up my thinking had been, I laughed until I had tears rolling down my face.

By the way, is Xyzal the best thing to use? Today is my first day on a full dose, so I'm still trying to figure out what works best. Also, how safe it is to take antihistamines for an extended period of time?

Dermatographism signifies a heavy histamine load which does suggest a mast cell disorder. Run some blood tests to get your answer quick.

• Serum tryptase,
• Serum chromogranin A
• Plasma histamine
• Plasma PGD2
• Plasma heparin
• Urine for PGD2
• PGF2a
• N-methylhistamine

I will try to bring up this testing with my naturopath when she's back in town. I assume I would need to be off of antihistamines for some period of time beforehand. How long would I need to be off the allergy medications to get accurate results? Do mast cell problems cycle through flares and remissions? Would the testing have to be done in the middle of a flare? (Can you tell that I'm still hoping the itching will just stop?)

 

[Blake2e]

On Friday my level of brain fog was so bad it caused some very convoluted thinking.

The allergist had recommended taking a pediatric dose of Xyzal, which is half a tablet, to reduce the itching. By the third day I realized that dose was too low for me. In my fog, I reasoned that I needed to go one more day on the half tablet because I still had a half tablet to use. My befuddled thinking was telling me that, if I didn't do it that way, I'd have to cut up the next pill so that I could match the existing half with half of the next pill to get a full dose. It was a few hours later that it dawned on me that I could've just set aside the half tablet and taken a full dose instead. When I realized how messed up my thinking had been, I laughed until I had tears rolling down my face.

By the way, is Xyzal the best thing to use? Today is my first day on a full dose, so I'm still trying to figure out what works best. Also, how safe it is to take antihistamines for an extended period of time?



I will try to bring up this testing with my naturopath when she's back in town. I assume I would need to be off of antihistamines for some period of time beforehand. How long would I need to be off the allergy medications to get accurate results? Do mast cell problems cycle through flares and remissions? Would the testing have to be done in the middle of a flare? (Can you tell that I'm still hoping the itching will just stop?)

The mental effects is the worst part about MCAS, I often joke about having alzheimers despite being so young.

Ideally try to be off all meds 5 days before testing to get most accurate results, also youll have to make yourself as symptomatic as you can handle then do the testing within 30 minutes afterwards. Some of the tests need to be done immediately after a reaction, tryptase is the only one that needs to be done 1 hour after a reaction. If I were you, I wouldnt wait for the Naturopath. You shouldnt be lay back on this. Pursue it aggressively. I'd try to find an immunologist who can see you sooner and tell them you suspect you have a mast cell disorder and want to get checked. My mast cells have never cycled. In my case its been a constant steadily increase in sensitivity and symptoms.

You can take gen 2 antihistamines long term without significant side effects. Its the gen 1s that can cause brain issues with long term use. Xyzal/Levoceterizine is gen 2. Xyzal is fine. You can also use mast cell stabilizers like cromolyn.

 

[Galixie]

If I were you, I wouldnt wait for the Naturopath. You shouldnt be lay back on this. Pursue it aggressively. I'd try to find an immunologist who can see you sooner and tell them you suspect you have a mast cell disorder and want to get checked.

The allergist I saw on the 3rd has agreed to run just the serum tryptase test tomorrow. It sounds like they won't do other tests unless this one is positive. Hopefully being off xyzal for only one day will be a long enough break. Wish me luck. (Which, in this case, I suppose would be more itchiness.)

 

[Blake2e]

The allergist I saw on the 3rd has agreed to run just the serum tryptase test tomorrow. It sounds like they won't do other tests unless this one is positive. Hopefully being off xyzal for only one day will be a long enough break. Wish me luck. (Which, in this case, I suppose would be more itchiness.)

Thats very strange of your allergist, he must not know much of MCAS. You could have MCAS and not have elevated tryptase. Multiple tests are done when diagnosing a patient for MCAS. You might need to google around to find an allergist/immunologist near you who says they treat this condition. Its better to see docs who have experience. And as youre waiting to see the new allergist, it might expedite things if you do the tests with the naturopath.

 

[Gingergrrl]

You could have MCAS and not have elevated tryptase.

Agreed and I had severe MCAS but never had elevated Tryptase (vs. elevated Prostaglandins, histamine, and about 40 of the 50 possible symptoms from the Mastocytosis Society for MCAS).

 

[Galixie]

Thats very strange of your allergist, he must not know much of MCAS. You could have MCAS and not have elevated tryptase. Multiple tests are done when diagnosing a patient for MCAS. You might need to google around to find an allergist/immunologist near you who says they treat this condition. Its better to see docs who have experience. And as youre waiting to see the new allergist, it might expedite things if you do the tests with the naturopath.

My Naturopath isn't in town, so I can't have any tests done there until she returns. I'm not certain that she's familiar with MCAS either.

I agree that the allergist doesn't sound particularly knowledgeable about MCAS. I actually had called her office to see if there were any other docs there who are more experienced with it (because I keep thinking that an allergy and asthma place that specializes in immunology ought to know about this). Somehow the result is that the same doctor is willing to run this one additional test.

I tried searching online for someone in my area that deals with MCAS and the only thing I found was a naturopath who specializes in lyme disease and who doesn't take any form of insurance. So I think I will try having this one test done first and see if that gets me anywhere.

Of course I woke up far less itchy this morning than I was yesterday. Go figure.

 

[Galixie]

I imagine that this is surprising to exactly no one, but my tryptase level came back normal and the allergist isn't going to do any further testing. It seems unlikely that I will get an MCAS diagnosis from anywhere, because I would have to have the tests done within a couple of hours of the start of the reaction (rather than a couple of weeks later when it was finally winding down...). I have no idea what the initial trigger was, so generating a reaction for testing purposes isn't an option either.

My symptoms have mostly subsided and I've stopped taking the antihistamine for now. I'm not sure if that's the right choice.

My reaction didn't result in anaphylaxis, but I am a little worried that it could if it ever happens again. I am split between wanting to hope it was a one-time occurrence and just move on, and wanting to be prepared in case it is just the beginning of things to come. I'm debating whether a medical alert bracelet would be a good idea, but it seems kind of extreme since I didn't have that severe of a reaction.

Should I just wait and see if it happens again in the future?

 

[Gingergrrl]

I imagine that this is surprising to exactly no one, but my tryptase level came back normal and the allergist isn't going to do any further testing.

This is very common and very frustrating ... I wish you could get tested for methyl-histamine and prostaglandins, too.

I have no idea what the initial trigger was, so generating a reaction for testing purposes isn't an option either.

The initial trigger for me (of first anaphylaxis episode) was a yellow dye in a piece of candy (yellow #5 also called "Tartrazine") and we almost didn't figure it out but luckily we did.

My symptoms have mostly subsided and I've stopped taking the antihistamine for now. I'm not sure if that's the right choice.

I cannot give medical advice (so please check with your doctor) but if you tolerated the antihistamine well, I see no down side in continuing it a bit longer. What was your thought process in stopping it? Were you wanting to see if your symptoms returned without it? I was also curious if you have tried a mast cell stabilizer (and hope I did not already ask you this a few posts above )

I'm debating whether a medical alert bracelet would be a good idea, but it seems kind of extreme since I didn't have that severe of a reaction.

I wear one that says "anaphylaxis risk" (and a few other things) and carry an EpiPen in my purse even though I have been in remission from MCAS since the end of 2016. I just do not feel confident that it could never happen again.

 

[Galixie]

I cannot give medical advice (so please check with your doctor) but if you tolerated the antihistamine well, I see no down side in continuing it a bit longer. What was your thought process in stopping it? Were you wanting to see if your symptoms returned without it? I was also curious if you have tried a mast cell stabilizer (and hope I did not already ask you this a few posts above )

My thought process was along the lines that
1. I couldn't tell how much of my tiredness and brain fog was a result of the reaction and how much was due to the antihistamine, so I wanted to see if I could think more clearly without it.
2. Even while on the antihistamine, the itching never fully subsided, so I wasn't sure that it was actually effective. I'm still not sure if it's a dose issue or if something about xyzal that just doesn't work for me. Or, maybe, taking it before bed meant that I was sleeping through the time when it was actually effective.
3. I'm trying to figure out what my baseline-normal is, so that I have some sense of what to pay attention to and what to ignore.

I did end up taking another xyzal this morning because the itching seemed to be ramping up again. I'm mildly hopeful that taking it in the morning will mean complete itch relief during the day.

I haven't tried a mast cell stabilizer. This whole thing is still really new to me. I had wanted to work with a professional on figuring out the best tactic. That's why it's disappointing to me that I won't be able to get a diagnosis. I feel as if I've been left adrift to figure this out on my own.

Honestly, if it were not for your story, Gingergrrl, along with someone I met a couple of years ago who also mentioned MCAS in passing, I would not even be aware the condition existed. I certainly wouldn't have heard about it from the allergist. In that sense, I feel like I am farther along in figuring out how to deal with it than I would otherwise be. So thank you! The information here has been wonderfully helpful.