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MTRJ75

Fall rashes - any successful approaches to cutting them off early?

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Was hoping to avoid it this year and in fact, this is the latest in the season I've gone rash free, but the beginnings of my first one of the year are starting to show up on my wrists yesterday and today. 

Short background, I've had these rashes multiple times every year between August and November since 2013 (which is the year I also had Pityriasis Rosea, though I don't particularly know if there's a connection).

Some of them have been week or two long annoyances. Last year, around Thanksgiving was the worst one yet. Most of my body was covered in this painful, swollen mess. 

So of course, that's led to some anxiety with this one and what it has the potential to turn into. 

As hard as I've tried to avoid any type of steroids for this issue, I've had to use a few topicals the last couple of years and last year even needed the dreaded Prednisolone pack. I know this is not a sustainable approach year after year because using these impactful medications can have negative long term effects. My PCP is not really of the same mind and seems content to hand these out liberally.  My other option is a long, difficult trip to a dermatologist, who I'm guessing may be stumped as well. I'd rather avoid both. 

Are these "seasonal" rashes a part of anyone else's suffering? Are they another nervous system thing or something else and has anyone found any successful alternative approaches. to cut them off early on in the process? Really not looking forward to this again. 

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That it occurs in fall suggests it could be related to some environmental trigger (like ragweed)

Have you explored allergies or mast cell activation syndrome as causes?

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I've been to an allergist and several ENTs. I certainly have seasonal allergies (every season now basically). They only suggest stuff like Claritin and nasal sprays and irrigation that don't do much. 

I've brought up MCAS to several doctors. Some have looked at me like I made up the word, a couple have brushed it off and yet another said maybe, but they wouldn't know what to even do about it. 

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I think you are wise to avoid the steroids if you can

I have MCAS and from what I understand H1 and H2 antihistamines are typically one of the most important parts of a MCAS treatment regimen, so maybe talk to your dr. about trying those?

Even if you have tried claritin already, at higher doses perhaps it will help

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Yes, we have had the antihistamine conversation a couple of weeks ago. Thank you for that though. I will revisit with my neuro. The complicated thing about that is we have to try to avoid anything that will complicate my Sjogren's dryness. 

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@MTRJ75 - the issues you are describing seem complex and specific. MCAS can be tested for by an allergist and your specific concerns should be directed at your treating physician. In my own case seasonal allergies have worsened my dysautonomia symptoms greatly and I have found improvement by using H1 and H2 blockers despite having negative MCAS testing by an allergist. 

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I didn't know there was a specific test for MCAS. All I have to do is convince a doctor to run it on me. It would be wonderful if blocking histamines could cut these off before they started. 

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Be careful in testing to know there is a difference between mastocytosis, MCAS and MCAD (Some Dr.s hear MCAS and think mastocytosis, a different disorder)

As a word of caution, MCAS is a relatively recently described disorder, so I do not think all allergists will know how to test for it or even know what it is

You will want to make sure you find a dr. who knows/has experience with MCAS or is willing to contact an expert to learn how to properly test for it

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Yup, as I've said, this has been a big part of the problem for me. A lot of doctors are quick to label something they don't understand as anxiety. I guess I was pleasantly surprised that my neuro even knew what MCAS was even if he didn't think it was something that needed to be immediately pursued. I'm fairly certain it will be near impossible for me to find someone experienced in dealing with it. (Difficulty traveling and insurance with limited options.) I'm just hoping to find someone willing to explore the possibility. 

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@MTRJ75 I saw an allergist and asked to be tested for MCAS. It required me to travel to a university hospital and give blood and urine samples. Thankfully I tested negative but since I have seasonal allergies that recently caused my dysautonomia to worsen I follow the same treatment recommended for MCAS - H1 and H2 blockers. This has greatly improved my symptoms. 

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That's the thing I can't do. Travel. I'm in a situation where if I can't drive, I'm not getting there, which hardly even matters because it will probably require going out of state, which my insurance won't cover. I thank you for the responses and certainly will pursue this direction as far as I can though. 

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These particular rashes...yes. As early as August to as late as Thanksgiving. Of the six or seven years this has been happening now, both the earliest and latest instances occurred last year. This is the latest in the year I've had my first rash, so perhaps that's good news. 

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2 hours ago, MTRJ75 said:

These particular rashes...yes. As early as August to as late as Thanksgiving. Of the six or seven years this has been happening now, both the earliest and latest instances occurred last year. This is the latest in the year I've had my first rash, so perhaps that's good news. 

I guess my question is would MCAS cause seasonal rashes?  I don't know too much about it, but thought it was something that was year round.

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I would guess it's something in the environment that time of year that triggers the MCAS in a certain way? 

Thankfully, this particular time, it seems to be receding before it gets too bad. Still going to stay on the MCAS trail in an attempt to prevent future outbreaks. 

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I have MCAS and allergies definitely seem to worsen it for me

I imagine the allergies ramp up the immune system in a way that makes the MCAS worse

Or maybe MCAS predisposes you to more serious allergies and more unusual responses to them

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