Just Dermatographism or MCAS?

[fredam7]

@Galixie i have severe dermatographia and took xyzal as well. I took monteleukast and Zantac as well, all 3 together . I agree , it barely helps and the itching and hives are hell.

I got the same raised X from the scratch test but the hives spread allover , face to feet. The allergist told me then that antihistamines would not help me and she ordered xolair and it was approved and infusion set up within a week.

I was overwhelmed and didn't know the dermatographia was part of MCAS so I decided to wait it out . Wrong choice . Got much worse , very quickly, so you may want to see an allergist who knows about mast cell disorders and get the 24 hr urine done .

Recently, the neuro reiterated my brain symptoms are from MCAS but I don't know , i don't think so. But I understand what you did with the half pill because that's me all the time but I'm not amused by it because it's scary and awful now and I feel I have brain damage . I make very bizarre decisions and am stumped by how to close the fridge . It took me 5 hours to realize I could empty the contents of the fridge drawers and leave the drawers out , then close the fridge . That's pretty low mental function after being very high functioning . It's horrifying .

So it is possible the dermatographia is part of a more involved mast cell disorder . Do you get imprinted by your clothing ? I mean every stitch and detail , anything you touch , and it itches ?

In my experience, the dermatographia just went strong and endless , until this moment . The brain stuff got worse and worse . But I don't know if it's the MCAS

The other thing is , some people can't dampen the MCAS . Nothing has helped me with it at all. Quercetin and vit c and xanax , all useless . Cromolyn , I think made me worse . Antihistamines had a minor effect then became useless

It's possible your hives are unrelated to MCAS . Can you eat ? Use products?

It's best to get the 24 hr urine and then rule it out . If your hives are better , that's a very good sign . I personally wouldn't keep taking antihistamines if you don't need to . Or try Allegra . They simply don't do anything when you have bad dermatographia but you can have them there just as bsck up

It's all very strange, I think we were exposed to a lot of radiation or mold to set this off . It's not some life long thing like some dr's like to say . If you can get away from what is making you sick , maybe it will go away so maybe less is more right now . You will know if you worsen and then can try stronger things if necessary .

The most important thing is the 24 hr urine and thorough blood work . MCAS is being diagnosed a lot by a small number of dr's and specialists are then on edge and sort of upset about it and might not be willing to look further . Your allergist might not want to run all these tests in the abscence of other very bothersome symptoms .

 

[Galixie]

So it is possible the dermatographia is part of a more involved mast cell disorder . Do you get imprinted by your clothing ? I mean every stitch and detail , anything you touch , and it itches ?

It's possible your hives are unrelated to MCAS . Can you eat ? Use products?

Until now, I never gave any thought to the way clothing imprints on my skin. I notice it most with my socks, where I can see every stitch, but I also am usually able to see lines where seams of clothing have been against my skin. I tend to wear pretty loose clothing and the imprinted areas usually don't itch or just barely itch. I also get the imprint of sheets when I sleep. I guess I just assumed it was normal.

So far, the only hives I've been dealing with are on areas that have already become really itchy. If I scratch, hives pop up looking like bug bites. Thankfully, topical hydrocortisone calms those down pretty quickly.

I have yet to figure out any actual trigger. I did switch to a hypo-allergenic laundry detergent, as the allergist recommended, but I haven't really noticed a difference so far. Otherwise I am still using the same products and eating the same foods as before.

My level of itchiness varies. Yesterday was bad enough that I took an antihistamine, but today is much better (so far).

 

[fredam7]

Until now, I never gave any thought to the way clothing imprints on my skin. I notice it most with my socks, where I can see every stitch, but I also am usually able to see lines where seams of clothing have been against my skin. I tend to wear pretty loose clothing and the imprinted areas usually don't itch or just barely itch. I also get the imprint of sheets when I sleep. I guess I just assumed it was normal.

So far, the only hives I've been dealing with are on areas that have already become really itchy. If I scratch, hives pop up looking like bug bites. Thankfully, topical hydrocortisone calms those down pretty quickly.

I have yet to figure out any actual trigger. I did switch to a hypo-allergenic laundry detergent, as the allergist recommended, but I haven't really noticed a difference so far. Otherwise I am still using the same products and eating the same foods as before.

My level of itchiness varies. Yesterday was bad enough that I took an antihistamine, but today is much better (so far).

Sounds like you definitely have a strong case of dermatographia.
I never had hives or clothing imprints and had very good skin .

Well, if I sit on exam table papers , it all imprints , every crease , same with sheets and Seams and yes I have been wearing very loose clothing too.

The stitching and sheets is not normal , it's the dermatographia. If I lay a piece of thread on my knee, it will imprint .

I was blasted with radiation and mine started and I mean zero hives or imprinting before , none , nor even from tight socks of tight jeans , bra straps , none of it .

Question is , is this part of something else . And yes , I get those mosquito bumps too. When the allergist did the X on inner forearm and hives spread , the hives had bumps allover . You have the same dermatographia I have . It really sucks

Watch the trend . I have not had any success with wishing it away or waiting it out . I saw a new allergist whole they're working me up at a new place to figure out the dysphonia , gi etc and the new allergist said he doesn't need to do the scratch test becayde when I moved hair out the way , I left track hives on my face

They're very annoying after an extended period of time . I would Just itch and itch and my scalp itches and my face and everywhere but I have nerve involvement as well

Xolair can help but it can cause cancer and other problems but I don't know . In on IVIg whigb has had no effect on the dermatographia, it makes it worse while on treatment and the week following

Allergists said that IVIg does nothing for MCAS or dermatographia from the outset though .

I will say monteleukast might not be the best drug . None will control that level of dermatographia. That's what the allergist told me and she was right .

I have no idea what triggers it and with dermatographia, you may never know . Things just imprint , everything. If I touch my leg with my hand , hives develop . Any pressure sets them off so it's not allergies snd antihistamines are well, pretty useless as far as I'm concerned .

If you can get the 24 hour urine test and all the labs , you can get a better idea but MCAS diagnoses are not standardized . Elevated histamine is enough to say someone has MCAS , not even close, but some non specialists are diagnosing people with MCAS based on that. So your allergist probably is wary due to the trendiness of this all

Have you had mold exposure ? Radiation ? Think bsck to any kind of light treatment , anything that could have altered your lymphocytes .

 

[fredam7]

I also wanted to say that it seems you have been carrying this a long time .

I never had imprints , all the hives and imprints showed up together post radiation , within 24hrs.

If you had a history of sheets and stitches imprinting , then you have had this brewing much longer . I wonder why it worsened ? Do you have mold at home ? Are you immune compromised ? Trauma ?

How long have you imprinted ?

 

[Galixie]

I also wanted to say that it seems you have been carrying this a long time .

I never had imprints , all the hives and imprints showed up together post radiation , within 24hrs.

If you had a history of sheets and stitches imprinting , then you have had this brewing much longer . I wonder why it worsened ? Do you have mold at home ? Are you immune compromised ? Trauma ?

How long have you imprinted ?

I don't know how long the imprinting has been going on (years probably). There really wasn't anything notably different at the time it worsened. Maybe a little extra stress, but even that should not have been enough to bring on weeks of itching.

If it was brought on by stress, that's pretty ironic. At this point, I'd need a vacation from my own body if I wanted to relax.

 

[fredam7]

I don't know how long the imprinting has been going on (years probably). There really wasn't anything notably different at the time it worsened. Maybe a little extra stress, but even that should not have been enough to bring on weeks of itching.

If it was brought on by stress, that's pretty ironic. At this point, I'd need a vacation from my own body if I wanted to relax.

If the stress is extreme , trauma , I believe it can do it.

But it may be that it flared up for you . It may pass, your allergist might be right that it can not be linked to MCAS or anything.

If the hives are not there some days, that's a very good sign . If even part of the day , they're going away , maybe they're receding . That's encouraging .

It's really the trend . Are the hives getting worse and it's itching all day and night ? Or are you getting longer reprieves ? Are yiy picking up symptoms quickly or do things seem pretty much the same ?

Calming down and relaxing goes a long way . Long way . I'm saying something I can't do for a specific reason but if anyone can , it's a big help.

Don't get too worried about MCAS , it's not as common as it's presented . I think the environment is making a lot of people ill and there is a lot we don't know .

We are carrying infections, viruses , eating and breathing poisons and many medications are terrible . And I regret all the medications I took over the years , that plays a role .

Then we get so sick we take more medications ! It's endless .

Keep us posted what happens with the hives . I hope they go away

 

[Gingergrrl]

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 apologize for my delayed reply and everything that you just explained makes sense. I can't remember, have you tried other H1 anti-histamines besides Xyzal? That is one of the few that I actually have never tried (and I tried just about everything known to man in 2015 when I was having anaphylaxis)!

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.

The two main mast cell stabilizers are Gastrocrom (Cromolyn) & Ketotifen. In the US, Ketotifen can't be purchased at a regular pharmacy like CVS and can only be obtained at a compounding pharmacy. I did not do well with Gastrocrom in 2015 (it had no positive affect and actually made me sicker) but once I started on Ketotifen, it was like the miracle medication for me and the very first step in controlling my MCAS reactions. It was not sufficient in and of itself by any means, but it made a huge difference for me. I'm hoping that you will be able to find another doctor who can properly assess and diagnose you. The average allergist sadly just doesn't know about MCAS.

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.

I am glad that my story was helpful and that is part of why I keep sharing it. I was not aware of MCAS myself until my allergic reactions started in Feb 2015 and progressed to the point of hospitalization in May 2015. No one at hospital had ever seen an MCAS patient before but they were able to (temporarily) stabilize my reactions with IV Benadryl after my main doctor did a phone consult w/Dr. Afrin about my case. And then two months later, I started w/my MCAS specialist (who I found through a private MCAS group on FB). I was positive on all the MCAS markers in blood & urine (histamine, prostaglandins D2 & F2a, Chromogranin A, etc) but was never positive for Tryptase.

He is the one who immediately prescribed Ketotifen and prescribed Atarax as my rescue med (since I had built up a toxicity to Benadryl and had to stop it). He made sure I always carry an EpiPen and that I got a Medic Alert bracelet that says "anaphylaxis risk" (among other things). Ultimately he (and my main doctor) got me on high dose IVIG which put the MCAS into remission by the end of 2016. He's had many patients in which IVIG re-set their immune system away from the insane allergic reactions and luckily I was one of them. But I also had 3+ years exposure to toxic mold in a prior rental, and if we had not moved and gotten rid of all of our belongings, I do not believe that any of these treatments could have helped me.

 

[Galixie]

If the stress is extreme , trauma , I believe it can do it.

But it may be that it flared up for you . It may pass, your allergist might be right that it can not be linked to MCAS or anything.

If the hives are not there some days, that's a very good sign . If even part of the day , they're going away , maybe they're receding . That's encouraging .

It's really the trend . Are the hives getting worse and it's itching all day and night ? Or are you getting longer reprieves ? Are yiy picking up symptoms quickly or do things seem pretty much the same ?

Calming down and relaxing goes a long way . Long way . I'm saying something I can't do for a specific reason but if anyone can , it's a big help.

Don't get too worried about MCAS , it's not as common as it's presented . I think the environment is making a lot of people ill and there is a lot we don't know .

We are carrying infections, viruses , eating and breathing poisons and many medications are terrible . And I regret all the medications I took over the years , that plays a role .

Then we get so sick we take more medications ! It's endless .

Keep us posted what happens with the hives . I hope they go away

As of yesterday, I am feeling better. Taking xyzal in the morning on Thursday seemed to help. I finally got complete itch relief by Thursday afternoon.

I guess now it's just a waiting game to see if it flares up again. According to mastcellaction.org, there can be cycles of activation and remission:

• The symptoms are often episodic or cyclic and wax and wane with varying degrees of intensity, sometimes worsening over time.

I'm cautiously optimistic that it was a one-time thing. Time will tell.

 

[fredam7]

I'm glad yours is calming down and you get itch relief , that's pretty great .

I'm not sure how it goes for others but there have been no episodes nor waning for me . I was just looking at the dermatographia allover my knee through a big hole in my pants becayde pieces of loose thread touched it and thought how much I hate having all these weird things that make me feel disgusting and ugly .

From what I understand, idiopathic dermatographia tends to disappear and may not reappear or there may be episodes . If it sticks around and it's there every single day, well, something not so good is going on .

A hematologist told me my lymphocytes and cells have been altered , fundamentally, so that's great. I have had dermatographia constantly for 17 months and counting , it's always on me somewhere , they last longer too as time goes on . Trend is always telling .

I think of there is no particular medical trauma or disaster , the body will try to go back to baseline so you might have had a flare . You're getting relief from medication and it seems you're sleeping through the night , both are extremely positive and fortunate things .

I would suggest steering clear of all toxins as much as possible . It looks like you're moving away from this episode and hopefully won't have another one .

Don't want to throw a monkey wrench in there , just putting this out for info. Sometimes persistent dermatographia coupled with a lot of symptoms , can mean more than MCAS . You need a good hematologist and biopsies of both a hive and bone marrow .

Mast cell disorders are really weird and cause a lot of problems for those with them . The effects on the brain are disturbing , I don't know what to call it other than it seems like some kind of encephalitis.

The dr's kept telling me to bring my stress level down and so I don't know if that is of any use to you but maybe you can cut this thing off and maybe it recede .

Glad you are moving forward

 

[Galixie]

Timeline of the start of the next episode (probably):

7:30pm I wake up from a nap with my neck and chin itching and some obvious dermatographia. The collar of my sweater, which was only lightly against my neck, had left a clear, obvious impression. I think little of it because it's not that bad.

5:30am I wake up in the morning to one side of my sinuses swollen shut. The swelling goes down and I'm able to breathe normally once I've been upright for a little while. Still a little itchy, but it's manageable.

7:00am I notice the cough. It's mild and unproductive. It's also kind of annoying. This is the point where I think maybe I should take an antihistamine to see if it helps, only to realize that I don't have one with me to take.

I have questions. It took about 12 hours for the cough to start, is a slow build up strange or normal with MCAS? Will it get worse if I do nothing, or has it peaked? (I realize no one can answer that one.) If a slow build up is the norm for me, does that mean I'm less likely to have to worry about anaphylaxis? Why was I triggered while I slept? Is that common?

 

[Gingergrrl]

This is the point where I think maybe I should take an antihistamine to see if it helps, only to realize that I don't have one with me to take.

Is it possible for you to always have antihistamines with you? I have not had anaphylaxis or a severe allergic reaction since 2016 but I still have Zyrtec, Atarax, and an EpiPen in my purse (for whether I am at home or out).

Will it get worse if I do nothing, or has it peaked? (I realize no one can answer that one.)

You are right that there is no way that anyone could answer that question and each case is different (even in the same person).

If a slow build up is the norm for me, does that mean I'm less likely to have to worry about anaphylaxis?

If you read some of the mast cell sites, there are people who are "leakers" and others who are "shockers" and some can be both. So you might have a very slow leaking of histamine or other substances from the mast cells that are chronically making you sick or you might have a sudden degranulation of mast cells resulting in anaphylactic shock (or some combination of both).

 

[Galixie]

Is it possible for you to always have antihistamines with you? I have not had anaphylaxis or a severe allergic reaction since 2016 but I still have Zyrtec, Atarax, and an EpiPen in my purse (for whether I am at home or out).

So far the only thing I've added to the traveling pharmacy of must-haves that I carry with me is hydrocortisone cream. The current list is:

• Extra Strength Tylenol
• Caffeine (to combine with the tylenol for an aspirin-free form of excedrine)
• Ondansetron (for the nausea brought on by migraines)
• Fludrocortisone
• An electrolyte drink and a salty snack (to make the fludrocortisone effective)
• Hydrocortisone cream

I sort of hate having to add much more to this list. But I did bring a few xyzal tablets to work in case I need something while I'm working. We could probably start a whole new thread of items/medicines you absolutely can't leave the house without. I bet that thread already exists.

I do think coughing was the peak of that episode because it pretty much went away a couple of hours later and I'm back to a very low level of itchiness that's really only affecting my arms.

 

[Galixie]

I don't want to attribute more things to MCAS than are really related, but I have a few new questions:

1. Can MCAS be the cause of idiopathic gastritis (gastritis that is not caused by h. pylori or an autoimmune condition)?
2. Would an antihistamine work to resolve the gastritis or would it need to be some other mast cell stabilizer based on whatever mediators are released?
3. If an antihistamine would definitely work, would a flare up of gastritis be possible while an antihistamine is still in your system?

If the answer to #1 is 'no' or the answer to #3 is 'yes', then I can assume my current gastritis flare up is unrelated to MCAS.

 

[Gingergrrl]

1. Can MCAS be the cause of idiopathic gastritis (gastritis that is not caused by h. pylori or an autoimmune condition)?

I would think that MCAS could be a cause of gastritis b/c there are so many mast cells in the GI tract. Can you post this question in one of the mast cell groups (like Mast Attack)? I think you would get a lot of good feedback there.

2. Would an antihistamine work to resolve the gastritis or would it need to be some other mast cell stabilizer based on whatever mediators are released?

It's so hard to say (b/c each person is so different). Have you tried an H1 blocker, H2 blocker, and a mast cell stabilizer and did they make any difference with the gastritis?

3. If an antihistamine would definitely work, would a flare up of gastritis be possible while an antihistamine is still in your system?

I think it would be impossible to say that an antihistamine would definitely work, even if you had 100% rock solid confirmed MCAS. It is also challenging to find the right one and there is a lot of trial and error. Back in 2015 when I had acute/severe MCAS, the most common H2 blocker, Zantac, did nothing for me but Pepcid later helped. I also tried endless H1 blockers that did nothing (Claritin, Allegra, etc) but Zyrtec helped and then Atarax was the miracle/rescue med for me. I also did horribly with Cromolyn but Ketotefin was another miracle med for me. There was significant trial and error until we found the right combo.

 

[Galixie]

I would think that MCAS could be a cause of gastritis b/c there are so many mast cells in the GI tract. Can you post this question in one of the mast cell groups (like Mast Attack)? I think you would get a lot of good feedback there.



It's so hard to say (b/c each person is so different). Have you tried an H1 blocker, H2 blocker, and a mast cell stabilizer and did they make any difference with the gastritis?



I think it would be impossible to say that an antihistamine would definitely work, even if you had 100% rock solid confirmed MCAS. It is also challenging to find the right one and there is a lot of trial and error. Back in 2015 when I had acute/severe MCAS, the most common H2 blocker, Zantac, did nothing for me but Pepcid later helped. I also tried endless H1 blockers that did nothing (Claritin, Allegra, etc) but Zyrtec helped and then Atarax was the miracle/rescue med for me. I also did horribly with Cromolyn but Ketotefin was another miracle med for me. There was significant trial and error until we found the right combo.

The reason I'm asking about it is because I had been doing ok not taking anything for my very low level itching, but the itching ramped up a couple days ago, so I took a xyzal. That made the itching stop for awhile. Xyzal is supposed to last 24 hours (I have my doubts) and the gastritis attack began about 14 hours after taking the xyzal.

So I was having a reaction strong enough where I needed to take something for it, and that seemed to calm the reaction down, but then I had a bad gastritis attack later that night for no obvious reason. I can't tell if they are related.

It would be nice to know the reason for the gastritis. Especially if it means there's a way to treat it.

So far I haven't tried anything besides xyzal. I'm hoping to get and try some quercetin. I would like to find something that doesn't make me sleepy.

 

[Gingergrrl]

Xyzal is supposed to last 24 hours (I have my doubts) and the gastritis attack began about 14 hours after taking the xyzal.

Even though I tried every antihistamine known to man in 2015, I never tried Xyzal. Is it supposed to be similar to Zyrtec in strength?

So I was having a reaction strong enough where I needed to take something for it, and that seemed to calm the reaction down, but then I had a bad gastritis attack later that night for no obvious reason. I can't tell if they are related.

If it was a mast cell reaction, whatever triggered it might have first triggered the itching and then the gastritis (even though they appeared at different times). Or they could be unrelated. It is hard to know.

So far I haven't tried anything besides xyzal. I'm hoping to get and try some quercetin. I would like to find something that doesn't make me sleepy.

Quercetin is an OTC supplement and you can order it on Amazon or buy at Vitamin Shoppe, etc. It has never made me sleepy and I have been taking it since 2015. I have heard some people report that it was stimulating for them but for me it is just neutral. I took 2000 mg per day in 2015 but now only take 500 mg per day (and often skip it completely and probably do not even need it any more but I see no downside to taking it for me).

 

[Galixie]

Even though I tried every antihistamine known to man in 2015, I never tried Xyzal. Is it supposed to be similar to Zyrtec in strength?

The box says the active ingredient in each xyzal tablet is 5mg levocetirizine dihydrochloride.

I think I read something yesterday about zyrtec having a second active ingredient that xyzal doesn't contain? So they are similar in antihistamine strength, but different because of whatever the second ingredient does.

I did find some quercetin while shopping yesterday, so I've started taking 500mg of that. The itching/hives have continued to to flare up, so I'm using xyzal and hydrocortisone cream also. I sure hope somethings works and it calms down soon.

 

[Galixie]

I would think that MCAS could be a cause of gastritis b/c there are so many mast cells in the GI tract. Can you post this question in one of the mast cell groups (like Mast Attack)? I think you would get a lot of good feedback there.

Maybe I'm not searching using the correct words, but I honestly can't seem to find a forum for MCAS. When I searched, the only thing I found that seemed similar was some sort of facebook group (which is not going to work for me, since I don't use facebook). Is there a good MCAS forum somewhere?

 

[Gingergrrl]

I think I read something yesterday about zyrtec having a second active ingredient that xyzal doesn't contain? So they are similar in antihistamine strength, but different because of whatever the second ingredient does.

I believe that Zyrtec just has one active ingredient "Cetirizine" according to my bottle. I am wondering if it might work better for you than Xyzal?

I did find some quercetin while shopping yesterday, so I've started taking 500mg of that.

Maybe I'm not searching using the correct words, but I honestly can't seem to find a forum for MCAS. When I searched, the only thing I found that seemed similar was some sort of facebook group (which is not going to work for me, since I don't use facebook). Is there a good MCAS forum somewhere?

The two mast cell groups that I belonged to were on Facebook. One was "Mast Attack" and I cannot remember the name of the second but I can find it if it would be helpful. Both were private, members only groups.

 

[Galixie]

I'm not sure where to put these questions, so I'm tacking onto my existing thread in the hopes that someone will give it some thought and answer:

I know that I've had high antibodies for a few years that have clearly indicated that something was going haywire with my immune system. It's the basis of my CFS diagnosis. The urticaria didn't start until March of this year.

• So is MCAS a progression of my existing immune system dysfunction?
• Or was it always MCAS and now it's just more obvious?
• Or do I have two separate but similar things wrong with me (which seems like the less likely possibility).

My naturopath seemed to indicate that my MCAS is a result or progression of the CFS. But it seemed speculative and I'm unclear how CFS would cause MCAS.