Erythema, Maybe Starting To Scar My Chin?

[blueskies]

Hi all,

I get occurences of erythema. Sometimes I can trace it back to what has caused it and sometimes I think it's just something my body does for the heck of it every now and then.

My skin will burn in places all over my body. But over the past 6 months or so it is worse on my chin. The red spots there become raised as well as burns like ****. I may or may not take a short course of prednisone and antihistamines for it depending on the severity of the burning.

The thing that worries me is that I've now noticed that after the raised red blotches - and sometimes i have a 'pimple' - clear up I'm getting a purplish/blue chin. And I've got a feeling this may be becomming more permanent. I've got a much bigger mirror and better lighting in the bathroom of the new apartment I've just moved to a few months ago and have been noticed that my chin looks bruised and purple when I take the time and remember to look (I'm not a great one for looking in mirrors -- just don't do it very often). Actually I'm wondering if this has become permanent because before it went red this time every time I looked in the mirror it looked purplish.

I know erythema is not really a 'pots thing' but it all my symptoms went really haywire around the same time about 7 years ago -- before that it was 'all in my head' until I manifested all sorts of symptoms that docs could not deny- my increase in types of symptoms and severity of the symptoms I'd previously displayed became undeniable.

I'd appreciate any help or knowledge anyone has on this particular thing.

Many thanks,

blue

[Noreen]

Hi blue-

The term will be unfamiliar to some forum members so I was looking for a definition to post. The following is from MedicineNet -

Erythema nodosum is a type of skin inflammation that is located in a certain portion of the fatty layer of skin. Erythema nodosum (also called EN) results in reddish, painful, tender lumps most commonly located in the front of the legs below the knees. The tender lumps, or nodules, of erythema nodosum range in size from 1 to 5 centimeters. The nodular swelling is caused by a special pattern of inflammation in the fatty layer of skin.

Erythema nodosum can be self-limited and resolve on its own in three to six weeks. Upon resolution, it may leave only a temporary bruised appearance or leave a chronic indentation in the skin where the fatty layer has been injured.

There are several scenarios for the outcome of erythema nodosum. Typically, these areas of nodular tenderness range in size from about a dime to a quarter and they may be tender and inflamed off and on for a period of weeks. They usually then resolve spontaneously, each one of the little areas of inflammation shrinking down and then becoming flat rather than raised and inflamed. They leave a bruised appearance. Then, they resolve spontaneously completely.

So, while I was just looking for a definition, I think that answers it for you. It is not permanent (probably only feels that way).

[juliegee]

Hey Blue-

I looked into "erythema" & found a slightly different definition. It simply refers to a redness of the skin caused by a variety of different things. And, YES, I have also suffered with this on my chin & I do believe it is connected to my dysautonomia.

I have rosecea. It is caused by my face flushing, usually after eating. The capillaries beneath my skin turn very hot several times throughout the day. I even have some places where the capillaries are permanently visible from the flushing. My dermo put me on a low dose of anti-B's (50mg doxyclycline a day) and I use a special get called "metrogel" on my face several times a week. All of this has helped.

I have come to find out that my dysautonomia is caused, in part, by a condition called Mast Cell Activation Disorder (MCAD.) I treat this with a combo of H-1's and an H-2, and an antileuketreine. All of this moderates the flushing and improves the appearance of my red chin.

Through trial and error, I've come to find out that fluoride tooth paste & moutwash further exacerbates this. I have stuck to Tom's natural paste w/o fluoride. It also seems to help with reducing redness and bumps. My dermo has also lazered a few of the permanent red lines to make them disappear.

You may or may not have something similar going on.... In case it's something like what I'm dealing with- I just wanted to let you know that it's not permanent. My chin's gorgeous today , well maybe not gorgeous, but much better . Hope you get it figured out.

Julie

[blueskies]

Thanks Reen and Julie,

After reading your posts I did a bit of research and found a picture on an erythema site of someone's big toe who suffered ereythema nodusum. The markings on the toe looked just like my chin when it breaks out. My allergist/immunologist is away at the moment so I'm taking the H1 and H2 receptors and a 15mg dose of prednisone she recommends when this whole erythema thing gets too uncomfortable. My whole body has been burning this past week (I feel like I'm burning up on the inside and like I'm burning in different places on my skin as well) but in the past few days, with the medication, things are calming down. It's interesting to note though, that when the medication (especially the prednisone) starts to run out of effect as the day wears on that the redness comes back --just not as bad and I think it has to do with the H1 (Zyrtec) and H2 (ranitidine) I take twice a day being helpful. Until she gets back from holidays (the earliest appointment I could get was August) I'm hoping to continue on the Zyrtec and ranitidine. (hoping to drop off the prednisone in a few days time).

I've long felt that I possibly have carcinoid syndrome (I have a peanut sized growth in the submucosal walls of my stomach) and friday week my new gi will be doing an ultrasound endoscopy and taking a biopsy (he can't understand why when it was found it was not biopsied by my old gi). this new gi knows about pots too, which is ultra helpful. The only symptom I don't get of carcinoid syndrome is diarrhea. I have the opposite problem and it was taking magnesium sulfate to empty my bowels which bought on this latest outbreak of burning and redness (but I flush at a less painful level most of the time and they are mostly dry flushes which indicate carcinoid syndrome). I think it's a remote possiblility that I have it but my new gi is taking this very seriously. I think my old gi dismissed carcinoid syndrome because I didn't have the classic diarrhea but with pots why would I? Anything is possible.

Otherwise I'm thinking, as the problem is getting worse and not better I might have an underlying mast cell disorder. I did the 24 hour urine test some years ago and was assured I did not but recently just found out on the mastocytosis society website that 73 percent of people with mast cell disorder are diagnosed this way. Other's who have it fly under that radar and diagnosis can be missed with this test. Apparently. I have never been told this but I figure the mastocytosis society would have this right.

Hopefully I haven't messed up any of the information I've read up on. My brain fog is really bad these days -- I put it down to too much stress and distress -- and often don't trust myself to not misunderstand the stuff I may research.

At any rate, I'm not sure what's worse. The burning, red skin on parts of my body esp. my chin or the feeling like I'm burning up from inside all over my body. It's part of the reason I feel such distress.

I've raved on, sorry. I'd edit some of what i've written as I've put in too much info but I'm brain fogged at the moment and not sure if I could make sense if I tried to edit. Hope I've made sense this time.

Many thanks,

blue

[Noreen]

Blue-

hope you get some relief soon. I am so glad that your new GI guy 'gets' PoTs.

Let us know how you make out.

I know how bad the brain fog can be and how scary and lonely when one's brain has gone AWOL.

{{hugs}}

noreen

[janiedelite]

Hi Blue,

My mom has had carcinoid syndrome for over 20 years. I have flushing as well, but haven't tested positive for carcinoid thank goodness. Most docs think a 5HIAA is the best diagnostic for carcinoid, but the best marker to check is a Chromogranin A (CgA). It's a blood test. FYI, if you're on any type of proton pump inhibitor (like Prilosec), you can have a slightly false positive.

Best of luck getting to the root of your symptoms. I've suspected I have rosacea as well, as most of the females in my family have some degree of flushing and the neuro at Mayo noted swollen blood vessels on my face (I thought they were just freckles). My face has a darker pigment than the skin on my neck and chest this year, and I've flushed easily all my life but much more frequently in the last few years. I'll keep getting tested for carcinoid, though.

[blueskies]

Blue-

hope you get some relief soon. I am so glad that your new GI guy 'gets' PoTs.

Let us know how you make out.

I know how bad the brain fog can be and how scary and lonely when one's brain has gone AWOL.

{{hugs}}

noreen

Thanks Noreen,

My POTS doc recommended him and he was the first doc other than my pots doc who could talk knowledgeably about POTS. It was like winning the lottery when I had my appointment with him .

I will let you know how I make out. Not looking forward to the ultrasound endoscopy. Any form of anaesthesia really messes with me. But that's a common thing for a lot of people with dys.

Yep, my brain has gone AWOL, for sure. I just try not to stress about it. And wait for it to come back. If I remember just to try to go forward one step at a time when I'm able I'm not the emotional mess I can become when I try to fight it. I remember reading a paper by Grubb and was very gratified to see how much he understood about the effect having POTS (and I'd include all forms of dys but he was writing specifically about POTS) has on all areas of our lives. Our sense of self, our emotions, our finances etc, etc, etc.

blue.

[blueskies]

Hi Blue,

My mom has had carcinoid syndrome for over 20 years. I have flushing as well, but haven't tested positive for carcinoid thank goodness. Most docs think a 5HIAA is the best diagnostic for carcinoid, but the best marker to check is a Chromogranin A (CgA). It's a blood test. FYI, if you're on any type of proton pump inhibitor (like Prilosec), you can have a slightly false positive.

Best of luck getting to the root of your symptoms. I've suspected I have rosacea as well, as most of the females in my family have some degree of flushing and the neuro at Mayo noted swollen blood vessels on my face (I thought they were just freckles). My face has a darker pigment than the skin on my neck and chest this year, and I've flushed easily all my life but much more frequently in the last few years. I'll keep getting tested for carcinoid, though.

Thankyou, Thankful,

I feel for your mum. And you. The flushing is a right royal pain, that's for sure. Thanks for mentioning the Chromogranin A (CgA) test. I came across that info the other day on a site for carcinoid syndrome but that was the first time I'd ever heard about it. Your imput was the second. I intend to have the blood test done.

My sister has rosacea. I haven't seen her face when it's active. Apparently going from heat to cold really messes with her face and causes her to go bright red and her nose becomes slightly swollen temporarily. She finds winters hard because we are forever walking out of heated areas (homes, shops etc, into the cold). I'm in Australia and our winter starts officially in a few days time. I welcome winter. She does not. She's off this winter to spend 3 months in Bali in the heat. I think one of her reasons for choosing Bali for her and her family to go to was she does better in warm climates with her rosacea whereas my flushing feels much worse in the heat. I used to love summer but now am just so glad when each summer ends. It's a shame. Wouldn't it be lovely to be able to appreciate every season?

blue

[janiedelite]

I used to love summer but now am just so glad when each summer ends. It's a shame. Wouldn't it be lovely to be able to appreciate every season?

! It seems that I look forward to the end of summer, but I have a surge of burning pain (not just face, but all over) when the cooler weather sets in. This year was really bad because we had an abrupt shift from 80 degree (F) weather to 50 degree weather in October. I've developed constant burning in my face, hands and feet since 2008. My mom has burning skin in any dependent area, but her docs believe it to be a result of the excessive serotonin in her bloodstream irritating her small nerve fibers. As for me, I've been diagnosed with small fiber neuropathy although none of the tests for it were positive, so it was just a diagnosis of exclusion.

Another thought, when my mom flushes she gets several other symptoms along with each flush including a feeling of overwhelming dread and surge of emotions (I'm assuming because her tumors are releasing large amounts of catecholamines), and she has increased diarrhea. I get these emotional surges as well with my flushes, along with chest pain. Still, some carcinoid patients hardly even notice when they flush and don't have the concomitant symptoms my mom has.

[blueskies]

Hi Thankful,

I seem to have a lot in common with both your mum and yourself when it comes to the burning sensations. At the moment my feet are burning quite a bit -- up to my knees. My face is also burning as are my upper arms and a bit across the back of my shoulder area.

This is actually a 'good day' when it comes to the burning sensations. I haven't got the feeling like I'm burning up on the inside all over for example.

Also, skin sensitivity often acompanies this burning sensation. I find it very hard to find clothes to put on that are soft enough to not hurt my skin. Pain doc says it's because of having so much head pain I'm now overly sensitive to pain but POTS doc says it's something to do with autonomic dysfunction. Either way, I'm stuck with just having to deal with it and wait for it to go away. Cool showers (not cold ones) sometimes help. Moderate temps. can help too. And a few times in the last couple of days I've stripped down to my underwear and stood barefoot on the kitchen tiles in front of an open window == and we've had some quite cold days for this time of year. Although Sydney weather is hardly what you'd call 'extreme' at any time. No such thing as snow in Sydney for example.

When it gets real bad I try my allergist/immunologists plan for it and for anaphylactoid or other allergic reactions I also have to deal with. I take prednisone, zantac and zyrtec. Sometimes this regime seems to work to an extent when it comes to the redness and burning. Sometimes it doesn't. Prednisone WILL always help with my chin rash and 'pimples.' A type of erythema. But I've got to thinking for the burning it may just calm down at times on prednisone coincidently -- because it doesn't work all the time.

I'm wondering how you and your mum handle these sensations. What you and she take for it, if anything. Emotionally they take a lot out of me.

I can feel like I'm really losing it when it's at it's worse. Tears and everything. And tears only seem to make it worse sometimes. Certainly makes the flushing worse. Weirdest thing to me is that I was never a person who flushed -- until about 8 years ago. My daughter is. She flushes when embarrased for example. I"ve just never done that when I've been embarrased.

blue

[janiedelite]

I'm wondering how you and your mum handle these sensations. What you and she take for it, if anything. Emotionally they take a lot out of me.

I hear you there. I tried prednisone once for a 12-day trial (started at 30mg and tapered down). It didn't help the burning at all for me. It's so hard to be in full-body pain all of the time. When it gets above 70 degrees, or when there's any change in weather, my burning spreads from just my extremities to my whole body, even my eyes, mouth, ears, etc. This pain started in 2008, and no doctor could really answer why it was happening. My PCP was the first to pinpoint it as an autonomic issue. I started seeing a therapist to have someone to vent to about this pain as I didn't want to wear out my mom, husband or friends. Once I had a diagnosis of dysautonomia and neuropathy, it helped. Otherwise, at times I actually wished I was going insane. At least that might be able to be fixed!?

Here's my timeline of events:

10/06: first tachy episode. Started seeing docs who admitted the tachycardia was NOT normal, but had no answers.

12/06: started getting these annoying, itchy bumps on my toes that went away at the end of winter.

11/07: the itchy bumps come back and my toes turn purple, along with horrible itching at night that keeps me awake nearly all night. Also, the itching gets worse when my feet are under covers, so I start sleeping with my feet in the open winter air. It takes 5 months and 3 doctors but I find out these are a type of pernio.

6/08: the itching subsided 4/08, but now I'm getting horrible burning pain with red feet. It takes a week and spreads to my hands, then face and mouth, and then to my whole body. Like you, my mom and I have hyperesthesia/allodynia. I could not tolerate Sydney's temps. No way, I'd be in horrible pain. I also start to notice horrible fatigue, nausea, and chest pain. I start going to doctor after doctor. Vascular doc diagnoses me with erythromelalgia, and finally at Mayo I'm diagnosed with POTS secondary to small fiber neuropathy

Currently, I'm taking 2700mg neurontin. My mom is on 1800mg/day and that is enough for her to keep her pain in the background. She's also on a lot of other meds, including high-dose octreotide which helps to vasoconstrict. When she doesn't have enough octreotide, she has POTS symptoms with high BP. I also have vicodin and I try to take it minimally (1/2 pill a day maybe). Benadryl also helps for me sometimes, but I take zyrtec (H1 blocker) daily and it doesn't help. I'd tried both zyrtec and zantac for several months with no discernable benefit. I've done a 24-hr urinary methylhistamine to check for MCAD but was negative. Benadryl so far has been the most effective for me to relieve the pain and help me sleep at night, but if I take it during the day I'm too sleepy. I carry around a water sprayer and spritz my burning skin all day. I have shades on the car windows to keep the sun off my skin. I wear loose, soft clothes, usually that don't touch my wrists or ankles. A big floppy hat helps too. I have a cooling vest because overheating makes the POTS and the burning worse. Fans are very helpful as well as cool, moist towels. On hot days, I often can't tolerate clothing of any type either. Of course, elevating my hands and feet help as well.

I wear compression hose 365 days a year. They do make me hot in the summer, but I think keeping blood from pooling in my legs has helped my feet and leg burning immensely. It sounds counter-productive, but I wear 30-40mm Hg compression and it really does help my burning pain in my feet and legs (and my POTS fatigue as well). I've also looked into wearing arm and hand compression, but decided that it would be too impractical. Too bad there's not head compression , maybe it would help with my facial burning! On hot days, I spritz my hose all day with water and they actually help me stay cool. I have to drink iced drinks because of the mouth burning.

Have you had a skin biopsy? Does your mouth burn (mine also tastes like metal sometimes too)? Do your hands and feet turn bright red? Do you have problems with cold temperatures and pernio/chilblains/purple feet?

I have an appt with my neurologist next week. He sees me to treat the "small fiber neuropathy." I think I mentioned that this was a diagnosis of exclusion (meaning the tests weren't positive, but I have all the symptoms for SFN). He might suggest for me to take tricyclic antidepressants. I just want something I can take that won't make me drowsy and that isn't narcotic. I tried Lyrica and it worked for my pain wonderfully, but I put on a lot of weight and it really flared all my symptoms when I tried to get off of it. Most people with erythromelalgia have it solely affect their feet, maybe their hands or face, never their whole body. For these folks patches often work (like lidocaine or ketamine).

It seems like every year my burning starts earlier and earlier, irregardless of the weather. Mine has already flared up this week. In 2008, it started the last week of June. In 2009, it started mid-June. I look forward to your next post, as I've only met a couple of others on this forum who share this painful problem!

[Noreen]

I'm wondering how you and your mum handle these sensations. What you and she take for it, if anything. Emotionally they take a lot out of me.

Have you had a skin biopsy? Does your mouth burn (mine also tastes like metal sometimes too)? Do your hands and feet turn bright red? Do you have problems with cold temperatures and pernio/chilblains/purple feet?

I have an appt with my neurologist next week. He sees me to treat the "small fiber neuropathy." I think I mentioned that this was a diagnosis of exclusion (meaning the tests weren't positive, but I have all the symptoms for SFN). He might suggest for me to take tricyclic antidepressants. I just want something I can take that won't make me drowsy and that isn't narcotic. I tried Lyrica and it worked for myul pain wonderfully, but I put on a lot of weight and it really flared all my symptoms when I tried to get off of it. Most people with erythromelalgia have it solely affect their feet, maybe their hands or face, never their whole body. For these folks patches often work (like lidocaine or ketamine)

thankful-

thks for your wonderfully complete post. I am being worked up for small fiber neuropathy by my new neuro by so many of the symptoms you mention - such as not being ablt to sleep with your feet under the covers and the horrible itching keeping you awake. I use to be on Cymbalta 60 mb bid and it probably dampened down things. Generally I use to blame way too much on Raynaud's but at my last rheumy appointment I looked down and said OMG as my feet were bright purple. I already use 3 lidocaine patches a day on my wrist and neck and that is the max dose.

noreen

[blueskies]

Hi Julie,

I saw my general practioner yesterday and he 'thinks' it's rosacea. And gave me something called Rozex gel. An anti-fungal and anti-biotic gel my pharmacist told me. I think. I've applied it twice and I know it's too early to see any positive results but this thing has spread since I saw the doc yesterday. It's now on my chin, all around my mouth, on one cheek and on my nose and a few bits on my forehead.

I"ll give it until Friday to see if it's going to settle a bit before I start searching for answers from other docs. My allergist/immunologist is away until early August which is a bummer.

Actually, there are a few gps who practice with 'my gp' and early yesterday when I rang to get an appointment I said that it did not have to be the doctor I usually see, but he had a cancellation wouldn't you know, which worked against me because I want to change to another doctor in the same practice -- I think my gp is 'lost' when it comes to POTS and I think he doesn't really believe it, to tell the truth. What with a 'mental illness' also on my record -- that doesn't help.

Anyway, although my face looks like I've got leprosy or something at least the burning stuff has gone away -- this time since Saturday. Knock on wood the burming stuff stays away.

My sister has rosacea and I've never seen her face look like as bad as mine does today. I need a veil if I want to go out and not feel like everyone is looking at my face and going 'yuck.' The pustules are pretty gross looking.

blue

[blueskies]

Hi thankful,

As you know I wrote you a long reply but 'lost' it despite somehow 'posting' it twice???? Anyway my post to you about all the burning skin stuff was really long and all over the place so tomorrow (if my brain is clear enough) I'm going to sit down and try to write a time-line for you about the skin flushing and burning -- much like you did in your post. It starts about 8 years ago. So I have to get my thoughts in order. I do want to exchange this info with you because we seem to have so many similarities -- even down to having problems with what clothes we wear. IE. that is if they are soft enough so as not to irritate the skin or lose enough.

I'll get on it as soon as my brain starts to function again. I've been reading a novel a bit lately and although I seem to forget a lot of what I've read at least I am getting back the concentration to actually read more than a paragraph and understand it. I think things in the brain fog department are starting to improve again for a while.

blue

[juliegee]

Hey Blue-

Glad you've got something for the "rosecea" (if that's what it is?) Your med sounds similar to Metrogel here in the states. My dermo also put me on an antibiotic, doxycyline, 50mg. I take it twice a day for the really bad stuff you are talking about. I now take it once daily as a preventative & could probably stop without a problem. The combo of antibiotics and gel really helps.

It was eye-opening for me (when I read online) that many rosecea patients (and doctors) were having great success treating their skin woes with H-1's (like zyrtec), H-2's (like zantac), and antileuketreines (like singulair.) That's essentially the regimen that I use to control Mast Cell Activation Disorder/MCAD.

I briefly read through your other symptoms, the burning/flushing, etc. I get that too with MCAD. It is a cause of POTS. Unlike mastocytosis, where patients have too many mast cells; MCAD patients have the normal number of mast cells- the mast cells they have are simply overly-reactive causing the flushing, burning, tachy, etc. Check out The Mastocytosis Society website to learn more: www.tmsforacure.org

I suspect that your chin issues could be related to your overall health.

All the best-

Julie

[blueskies]

Hi Julie and thanks,

I truly agree with most of your post actually. I'm going to have skin punch biopsy done when my allergist/immulogist gets back in August. Plus that blood test. And the Roxec IS metrogel. Doc did not suggest oral anti-biotics and I was relieved. Over the past 8 years in which this POTS stuff has really got out of hand I've tried oral anti-biotics 3 times and reacted to them with intense burning and flushing. Not sure what is going on there as antibiotics come in all forms. I reacted to amoxyllin, Keflex and one I can't remember the name of but it only took one pill to start the burning with that one. So, oral anti-b's would be out for me. I think. I'm too nervous to take any sort orally in case it sets off more burning feeling.

I do know that if I took the prednisone I have for any allergic reactions I may have, that my face would very likely clear up in a couple of days but only for a few hours a day (the anti-inflammation properties don't seem to last terribly long) And that stuff just messes too much with the body and too much with my emotions. Makes me feel mostly down, moody, and I want to cry a lot while on it while feeling slightly 'out of control' of myself. H1 and H2 receptors do help I think, but they make an already bad constipation total. So I had to stop them. My allergist did try me on singulair a few years ago but I had a reaction to it. But I think it might have been a 'head' reaction. Meaning I'm very phobic about new meds as I've grown allergic to so many .I didn't have one single allergy 9 years ago but an anaphylactic reaction suddenly to aspirin scared the **** out of me and I've had anaphylactoid reactions to other things and less dramatic allergic reactions to still other things ) ....well, thinking that there was probably something else I could try I didn't persist with the singulair. i will revisit the idea of taking this drug when I talk to her at my appointment in August. If I can last that long. May go see a dermatologist meanwhile in case he has some imput.

My mother just popped in and had a look at my skin and told me that my skin does not look like my sister's who has rosacea. I've never seen my sister's skin when it's inflammed.

Written a couple of hours later: Okay, actually I just saw the sister with the rosa

cea and she told me that hers looks nothing like mine - she hasn't got an 'outbreak' at the moment so I could not compare. She sald definately seek a specialist's opinion quickly. It does look gross. So far my mother and 2 sisters have seen it and they think it looks pretty bad. I've been out of the house a couple of times in the past 2 days and people I don't know have stared when they got up close enough.

[juliegee]

Hi Julie and thanks,

I truly agree with most of your post actually. I'm going to have skin punch biopsy done when my allergist/immulogist gets back in August. Plus that blood test. And the Roxec IS metrogel. Doc did not suggest oral anti-biotics and I was relieved. Over the past 8 years in which this POTS stuff has really got out of hand I've tried oral anti-biotics 3 times and reacted to them with intense burning and flushing. Not sure what is going on there as antibiotics come in all forms. I reacted to amoxyllin, Keflex and one I can't remember the name of but it only took one pill to start the burning with that one. So, oral anti-b's would be out for me. I think. I'm too nervous to take any sort orally in case it sets off more burning feeling.

I do know that if I took the prednisone I have for any allergic reactions I may have, that my face would very likely clear up in a couple of days but only for a few hours a day (the anti-inflammation properties don't seem to last terribly long) And that stuff just messes too much with the body and too much with my emotions. Makes me feel mostly down, moody, and I want to cry a lot while on it while feeling slightly 'out of control' of myself. H1 and H2 receptors do help I think, but they make an already bad constipation total. So I had to stop them. My allergist did try me on singulair a few years ago but I had a reaction to it. But I think it might have been a 'head' reaction. Meaning I'm very phobic about new meds as I've grown allergic to so many .I didn't have one single allergy 9 years ago but an anaphylactic reaction suddenly to aspirin scared the **** out of me and I've had anaphylactoid reactions to other things and less dramatic allergic reactions to still other things ) ....well, thinking that there was probably something else I could try I didn't persist with the singulair. i will revisit the idea of taking this drug when I talk to her at my appointment in August. If I can last that long. May go see a dermatologist meanwhile in case he has some imput.

My mother just popped in and had a look at my skin and told me that my skin does not look like my sister's who has rosacea. I've never seen my sister's skin when it's inflammed.

Written a couple of hours later: Okay, actually I just saw the sister with the rosa

cea and she told me that hers looks nothing like mine - she hasn't got an 'outbreak' at the moment so I could not compare. She sald definately seek a specialist's opinion quickly. It does look gross. So far my mother and 2 sisters have seen it and they think it looks pretty bad. I've been out of the house a couple of times in the past 2 days and people I don't know have stared when they got up close enough.

Sorry you're having a rough time now I had some pretty awful moments too- looked much worse than any rosecea picture I saw.) Maybe describe your rash better or even send us a photo. I worry about MRSA.... check that out. I, too, have a hard time with antibiotics. For some reason I can tolerate doxycycline. Biaxcin or erythromycin makes me break out in hives, etc.

I found some sunscreen in a local drugstore that really helped when things were bad. It was made by Eucerin for rosecea sufferers called "Redness Relief" and was actually minty green in color. When I blended it into my skin (chin especially), it looked almost normal & protected me from the sun. I can't find it locally now, but it is available online. Here is a link: http://www.drugstore.com/products/prod.asp...WELAID=61294916 I am not profitting or selling this, only recommending it for extreme flares.

Let us know what you find out from the allergist. I, too have had lots of anaphylactoid reactions to unknown triggers- scary. Sorry you are dealing with so much.

Julie

[blueskies]

[quote name='Mack's Mom' let us know what you find out from the allergist. I, too have had lots of anaphylactoid reactions to unknown triggers- scary. Sorry you are dealing with so much.

Julie

I had a bit of lucky yesterday afternoon. I rang my allergist/immunologist's secretary to ask her if there was another doc I could see why my doc was away. Turns out my doc hasn't started her holidays yet and I was offered an appointment for today at 5pm. Someone else had cancelled. So hopefully I'll know more by this evening. Whether it is rosacea or something else.

I just am not sure why my gp dismissed a form of erythema out of hand. I've got erythema -- was diagnosed with it about 7 years ago. It's a lot of bog red blotches and large areas of my skin are involved and bright red. although not raised. redness but often with some accompanying edema. But it tends to burn and is very sensitive. Sometimes i have the burning without the redness too. But this facial stuff is different that that. It was burning but that stopped. Thank the gods. It's raised and has white flakey skin peeling away from it. When I lifted a tiny bit of the white flakey skin off -- I didn't need to peel it, I just put my finger on it and it came away on my finger it was red underneath like the skin that surrounds the flakey stuff. About 5 minutes afer I lifted that bit of flakiness off the underneath skin became quite sore for a while. It settled pretty quickly. I think the white flakey stuff is dead skin. Can't think what else it would be.

A few months ago I had a recurring rash on my face (Not like this one but some similarities but it really was 'just a rash' looking thing and I didn't think 'yuk' when I looked at it) -- and was using hydrozole to clear it up. Hubby got sick with a bad back about 8 -9 weeks ago and I was nursing him for about 7 weeks. He had an op and came out the next day - he should have stayed in a few days as is the norm and I really needed the break but I didn't get it). I was potsy, sleeping on the lounge the whole time because he couldn't share our bed and I was in lots of muscle joint pain from doing so. He uses hydrozole for a skin thingy too (On his bum -- there, he deserves me to say where it is) and I realized when the skin rash came back during this time I was nursing him he was using my tube of hydrozole as well as his. I was not about to use a tube of something he'd been putting on his arse. That's for sure. And I was so dog tired, mentally and physically, and had all my pots crap going on I kept forgetting to pick up another tube of hydrozole from the pharmacist. Can't help wondering if I'd remembered to buy another tube and kept on using it if my skin would not have broken out like this? Whatever -- all I know is that I've been under excess stress lately with him being immobile and wonder if this has contributed to my facial rash thingy.

What is also freaking me out is that I can't really remember time frames of what happened when. It's like my brain fog has got so bad I've got amnesia about lots of things. I just can't remember things happening that did happen or if I know something happened I find it hard to recall when it happened. This has been going on for a while but I've been ignoring it however the past couple of months nursing my husband has made that problem so much worse I've made reference a few times to my brain fog on this forum. Stressing out, dealing day by day with his illness while trying to deal with pots while he seemed to think I had some sort of magical button I could hit to turn the pots off or something. I was so stressed and still am. This sort of stuff doesn't go away. But I can deal with it physically better than I can deal with it mentally. I really hate not being able to remember stuff or when stuff happened. I won't even be able to tell my allergist/immunologist when all this crap started exactly. I just can't remember properly. And am not sure where to begin.

I think my best approach is just show her my face and let her ask me questions and if I can answer them I will. If I can't I'll blame the exhaustion and brain fog.

Also, as to MRSA, 3 weeks ago today I spent 7 hours sitting by husband's bedside in the hospital while he was waiting to go down to surgery. I have given some thought to my skin maybe becoming infected there -- if it is an infection. Especially as I could have had a slight amount of the rash at the time and not registered it.- the earlier one I spoke about above that wasn't obvious to me that day -- my mind was on ohter things. I was just not noticing things that were happening to me. I just felt very lucky while he was sick that I could manage to get out and buy his daily food, get his prescriptons from his doctor and have them filled and then get up the two flights to my apartment. Also I had to get him to doctors appointments. It took many weeks before his dopey gp decided she didn't know what was happening in his back and sent us on to a spine specialist. No wonder I'm brain foggy and run down. I wasn't looking after myself at all during this time. He's been back at work since mid last week but has been so rude to me all this time -- guess his back is still hurting a little bit. But going by his visits to the pub etc. I shouldn't think it's hurting too much. However, after he finally took the time to put his glasses on and have a proper look at my face yesterday afternoon he became quite alarmed. When I told him later that I'd struck it lucky and got today's appointment he said he was really relieved. My face looks bad and it's freaking him out now he's taken the time to look. Usually he just tries to ignore that I'm sick. POTS is so often invisable. So it's easy for others to ignore a lot of the time as most of you would know. I'm feeling a bit bitter at the moment.

Oh, ****, I was trying so hard to keep all this inside but I've vented.

[janiedelite]

Oh yeesh! That sounds SO painful! I'm sorry that you had to go through so much physical stress lately, caring for your hubby. He is a very lucky man indeed. I do hope his back is getting better, too. It sure makes sense that you're flared up right now. I know you're having a lot of pain (and probably feel self-conscious a bit too), but at least your doctor can see you at your worst.

Please let us know how you do, and if you find anything that helps you.

[juliegee]

So.......What did the allergist think?

[blueskies]

Thankyou, thankful -- yeah I have been stressed and I can't remember if I said this allready but he is a 'horrible patient.' I haven't forgotten about writing a time line for you and will do it as soon as I possibly can. I did mention to my allergist/immunologist yesterday afternoon that I have FINALLY found a couple of people on a POTS forum that seem to have many of the same problems I have when it comes to skin. She was really happy for me as she said skin/alllergy/intolerance wise I was one of those rare people, unfortunately, that they have trouble helping.

So.......What did the allergist think?

My allergist dismissed my gp's diagnosis of rosacea (the 'pustules' were actually just dying skins shedding or skin starting to die, they had a creamy colour in the middle of the redness but they weren't really pustules, after all that -- he should have seen that). She said I have some sort of rash, gave it a general name but could not pinpoint it exactly. She said it wasn't fungal though. She did say the cream my gp prescribed would only have dried it out more because it contains alcholol. She's given me a stronger cortisone cream to use (stronger than you can by over the counter in Australia) and told me to send her an email if it doesn't work.

We are also trying singulair to help with allergies and all my food/chemical intolerances. I have had to follow a very bland diet for the past 8 years as I react to salicylates, amines, msg, additives etc in food (I've probably already mentioned all this) and any deviation will cause skin to redden and burn. It's called The RPA Elimination diet. Developed by one of our biggest hospitals for my sort of problem. Most people are able to eliminate certain foods and then after a while slowly add them back into their diet as they become less sensitised to stuff like salicylate containing foods etc, until they are back to an ordinary diet. Instead, I have become more sensitive over the years and the food I can eat is really limited. not quantities but variety. And because I can eat dairy I go for lots of butter and creamy stuff which has caused me to gain lots of weight too.

Anyway, we spoke for an hour and we talked about me trying some of the meds that I'd tried some years ago with her but was unable to tolerate side effects. So, long story shorter, I am trying singulair again. I know you take it and when she mentioned it I said I'd try that one first. (If it doesn't work out we can go back to trying others). The hope is that the singulair will allow me to eat a more balanced diet without skin reactions. I woke this morning with a worse than usual painful migraine after taking one singulair tablelt last night. I thought, oh crap. But the past few days I've accidently been leaving too long between my doses of migraine meds because I've been sleeping through the times I should be taking them. So I'm hoping I've just created the situation that I'm not in a steady state with my migraine meds and it's not the singulair.

She's not going away after all and wants me to keep in touch with her as she is hopeful that we can solve this stuff -- or at least part of it and after 8 years she can see I'm really pissed off about it all. When I said to her that I comfort myself about not being able to eat a normal diet or eat in a restaurant or anything by thinking of people who can't eat at all and are tube fed she said, no, not to think like that. That I've really had to put up with a lot with this particular problem and it would be crazy if I wasn't feeling frustrated etc. It's so nice to be understood and get a bit of sympathy. LOL.

Okay, I've gone on long enough and it's hurting my head to stare at the computer screen.

blue

[janiedelite]

It is SO nice to feel understood by physicians. I hope you can get some relief from the singulair and topical steroid cream. Please let us know if they help at all...

[juliegee]

Hey Blue-

Any improvement yet? You tolerating the singulair?

Julie

[blueskies]

Hey Blue-

Any improvement yet? You tolerating the singulair?

Julie

Hi Thankful and Julie,

I remembered yesterday that my allergist/immunologist was pretty certain it was a reaction to a drug. The only one that made sense to me -- because the burning started that afternoon and within two days it I had 'red patches on my face' that in following days started to peel etc -- as I think I've already told you. Anyway, I told her I thought it was the epsom salts I took for its laxative effect. I've had stronger and stronger negative reactions to that stuff even though it's magnesium sulfate and according to a cardiologist I once saw 'wouldn't hurt me at all.' She thought I was probably right, that it was the epsom salts. She said my skin would probably take a while to clear and not to be alarmed if I had little outbreaks again before it's fully healed.

Thankful, my skin is feeling much better already and starting to look a bit better.

That's partially what I mean by brain fog. I can forget stuff forever. Or I can forget it for a few days then it comes back to me. Yesterday I suddenly remembered her saying 'what drug do you think caused it.'

Julie,

I took one tablet of singulair and woke up early morning with migraine from ****. My migraine meds couldn't touch it. It's wasn't until yesterday afternoon that it really calmed down. 2 and a half days of bad head pain. It's still feels a bit 'iffy.' Like it could come back. I think it's because singulair is a vasodilator and I just can't tolerate vasodialators. It's sort of weird as even ventolin will bring on a migraine in 15 minutes. But I can use a bricanyl puffer when needed for my asthma. And my seretide preventor is okay. I think it was one of the reasons that hormone therapy for menopause didn't work as estrogen, I think is the one, is a vasodilator. The most effective drug I ever took for my migraine was ergotamine -- a vasoconstrictor. But I was taking it on a daily basis and it's a very bad drug if taken long term. Docs don't like it as it can cause gangrene, heart trouble and I don't know what else later down the line. I had to stop taking it and they put me on low dose opiates. Which mess with my bowels whick are already messed up....and so the story goes, on and on and on. i know most of you would have experienced this sort of thing -- take a med for one symptom and it messes with another.

At any rate, I'll ring her after the weekend and tell her that the singulair was a washout. There are others we can try again.

Lots of thanks for your responses. You have been very helpful and supportive -- no small thing.

blue

[Noreen]

Glad your skin is calming down and feeling better.

sorry the singulair didn't work out as hoped and I truly empathize with the migraine issue - glad it is over. I am happy you have a doc who is listening to you at last and caring.

Let us know how it goes.

noreen