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#1 britishangel6

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Posted 29 October 2010 - 03:49 PM

Does anyone else get periodic rashes? It usually appears after I shower, go outside (Florida heat), or exercise. They don't hurt or itch; just small, flat, discrete red or purple circles covering my chest, abdomen, or extremities. The rashes last anywhere from 30 minutes to a couple hours. Other times (usually after I shower) I get a flat, blotchy, pink/red rash along my cheekbones (similar to the placement of lupus butterfly rashes) and my face will feel very hot. With all the symptoms related to POTS I didn't know it this was another one and if it is, how POTS could explain it?

#2 Tia

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Posted 29 October 2010 - 08:44 PM

Does anyone else get periodic rashes? It usually appears after I shower, go outside (Florida heat), or exercise. They don't hurt or itch; just small, flat, discrete red or purple circles covering my chest, abdomen, or extremities. The rashes last anywhere from 30 minutes to a couple hours. Other times (usually after I shower) I get a flat, blotchy, pink/red rash along my cheekbones (similar to the placement of lupus butterfly rashes) and my face will feel very hot. With all the symptoms related to POTS I didn't know it this was another one and if it is, how POTS could explain it?


Hi, I wish I could help. I get a recurrent rash on my arm everyday that lasts about an hour or two. Sometimes it comes up after I shower as well. They're like hives. My GP told me to go to a dermatologist, but I still haven't made it. Maybe you should make an appointment? If the rashes are on your face as well, maybe they would send you to a rheumie if they didn't know what it was. Sorry! Good luck!

#3 Brye

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Posted 29 October 2010 - 10:33 PM

My last intermittent rash went along with Mono. Have you had mono? Just a thought.

Brye

#4 TLC's Mom

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Posted 29 October 2010 - 11:08 PM

Welcome to the world of Hives. It sounds like cholinergic urticaria. Researchers are currently trying to figure out the connection between MCAS/D and Dysautonomia. As long as you are not anaphylactic and don't have any itching, you won't need much in the way of treatment. Just try taking cooler showers, minimize exposure to extreme heat and outdoor exposure. My daughter has severe, chronic urticaria and angioedema. She has cold induced urticaria, cholinergic urticaria, andrenergic urticaria, dermatographism and angioedema. She also has POTS. Her urticaria is extremely itchy and it burns and will quickly take her into shock. She has been anaphylactic three times. She is now on three antihistamines and one inhaler to control her reativity. She still has major reactions on all these meds, but not as bad without them. Unlike urticaria, angioedema does not itch, but it will last beyond 24 hours and will leave scars behind in the deep tissues.

Good luck figuring it all out.

#5 blue

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Posted 29 October 2010 - 11:58 PM

Hi TLCsmom,

I sound a lot like your daughter. Chronic urticria. Erythema. Anaphylactic response to aspirin (nearly died). Anaphylactoid reactions to god knows what, a few times. Angieodema at times. Dermagraphism seems to be always present when I bother to test for it. For the past two years I always have hives somewhere on my face - chin and temples being a 'favourite' site. Plus I am now getting them on my upper back.

I try not to take anything. I have an epi-pen, now - but so far have not had to use it, thank god. I do take anti-histamines when things get more unsettled. I have cortisone tablets to take if things get worse. But when I get urticaria all over half my body it's off to emergency.

I react to so many things, including water (I started doing this last year - when I swim in the sea I can get more hives). But water reaction is not serious for me.

So many of us have this problem. It was my allergist who suggested 4 years ago I see another doc in another field, too. That's how I ended up being diagnosed with POTS. I wasn't looking for a diagnosis but when he started asking me all these questions at my first consultation I thought for the first time in my life,'hey, that's me.' Up until 10 years ago I didn't have one single freaking allergy. Although looking back I certainly had other symptoms of POTS -- since puberty. Up until 8 years ago I'd been told it was 'all in my head.' (I wish).

It wasn't until 'concrete/visbible/measurable/persistant' symptoms showed up that doctors started to believe that I wasn't nuts. Lovely of them -- not. Sorry, can't help myself. I'm still a bit angry about it all. It's not nice to be thought to be crazy for 2 decades.

blue

#6 Sarah4

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Posted 30 October 2010 - 10:15 AM

I also have rashes that come and go, skin itching and I now think I was having anaphalactic episodes all summer. I have a referral to a mast cell specialist up here in Canada. TLC's mom, are you able to direct me to any of the research going on about the link between mast cell disorders and POTS? I have one article (Shibbao? et al) but would love to bring more to my appointment if they are out there.

#7 TLC's Mom

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Posted 30 October 2010 - 09:25 PM

Hey Blue! I know what you are going through and I am glad that you do not have to live by the antihistamines on a daily basis. We don't know all of my daughter's triggers, but we do know that cold temps, water, air, etc. leads to anaphylaxis.

Sarah
I do need to apologize because I miss spoke earlier. Doctors are not trying to tie together MCAS/D but they are trying to tie together Chronic Urticaria and DYS. We do not have any research, but my daughter's doctor had made this statement to us. Based on this, he referred her to the Mayo Clinic in Minnesota. Of course, we can't go until it is summer (warm) again. Sorry, I was doing a lot of research on MCAS/D prior to coming to this site. Her reactions may end up fitting within this model, we will see what the World Health Order has to say about that.

Her Immunologist believes that because she has two very rare conditions (Generalized Cold Reflex Urticaria and POTS) that they must be secondary to another umbrella condition. He thinks that it may have something to do with Mitochondria in the cells.

I can tell you that Mack's Mom, Julie, has a lot of research information on MCAS/D.

#8 TLC's Mom

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Posted 31 October 2010 - 12:14 AM

I found some information tonight which may be useful.

visit: http://www.sciencedi...2a&searchtype=a
"The role of the CNS in the pathophysiology of urticaria has, historically, been almost totally neglected. The concept of the urticarias as ?neurovascular disorders? is not a new one, and was first proposed at the turn of the century."


and, also visit google books and search for On diseases of the Skin: A System of Cutaneous Medicine by Sir Erasmus Wilson. Go to page 244. It makes the following statements, "Urticaria is a neropathic affections." "May exist in any organ supplied w/sympathetic nerves." "The proximate cause of urticaria is an irritation of the nerves of the skin." "As a predisposing cause, we have detected the presence of debility, generally of the assimilative and sometimes as the nervous kind." This book was published in 1868.

#9 Cat_Lady

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Posted 07 November 2010 - 07:02 PM

I get random hives that can't really be attributed to anything. I take Zyrtec and Zantac because of this.

I've had allergic reactions and had hives from certain make-up, skin cream, etc. but they seem different, they are more itchy and more bumpy, if that makes sense.

The random hives are what drive me crazy. I did get horrible hives from Cashews once so I was told to avoid them. My other nut allergies were negative but I avoid them because of cross-contamination with Cashews.

Sometimes I get hives from eating something one day, but not the next day.

#10 lissy

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Posted 07 November 2010 - 07:14 PM

I have a rash that began after the major decline in health (POTS) and have ruled out lupus also...This is a weird rash like eczema and its in a private area it mostly stays all the time and very uncomfortable.
I also had a rash on my face a few times where it would just turn red and feel really hot for about 1 hr and then it would go away. I think I will see a dermatologist soon just to see what the exact name of the condition is and see if a cream might help.

Lissy