Has anyone tried 'Zostrix' - Dermatologist

Symptoms and Treatments
1

Although the redness / burning etc has been more moderate than it can get.. i'm not very pleased to have EM visiting me more again lately....
(Last night's "visit" from a very annoying, familiar "friend" (photos attached).

My dermatologist called me back with the results from the 24 hr urine test came back fine (no pheto-something-coma) which she wanted to rule out as the cause of any redness.
During our phone conversation - I gathered the courage to ask her if EM was a possibility - and she said yes - it is a possibility.

She said - i'm not sure I've heard of it effecting ears? .. but I guess it could - since ears are peripheral.. but EM also tends to also effect feet etc. you don't happen to get these symptoms on your feet though... do you? - i don't think I've asked you...."

me: " yes. have the same symptoms on feet, hands, and ears - sometimes both ears other times only one ear burns up"


She said she isn't sure what to prescribe me and doesn't want to interfere with medications I'm on from cardiologist or worsen my autonomic problems... so she said she would trial me on something that has little to no side effects, is fairly affordable and can be bought OTC here. She wants to catch up after I've tried the it.


The cream she has prescribed It's called "Zostrix". It seems like a bit of a long shot (just by googling there seems to be very few studies on the effects of it in regards to EM) But ! I'm keen to give it a try! worst case scenario - if it doesn't work, I will ask dermatologist to talk with my cardiologist so we can figure out what else might be suitable / wont interfere with autonomic system / meds i'm on / and wont trigger EM or Raynauds.
The cream comes in two strengths. She has given me a script for both - starting on the lower dose one - and then trialing the higher dose one if no improvement. Here is a link to info about it...

http://reference.medscape.com/…/capzasin-p-zostrix…

http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2397831/


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Hello MeoMachine.

I am so sorry your EM seems to be getting worse. I am glad you decided to ask about it possibly being EM. I know your doctor sounded a little concerned with you fitting the TYPICAL EM if there is such a thing. Just so you know and you can let your doctor know as well there doesn't seem to be a TYPICAL EM. I know medical journals and such will speak of TYPICAL EM effecting the feet and occasionally the hands only but there are many people have it all over their bodies and their EM can also change effecting different body parts , one side both sides. So if she comes to the conclusion in the future that yours can't be EM because of where you have it or don't have it you can let her know what isn't in some medical journals that it can effect any and everywhere. I hope this new cream works for you. Do you mind letting us know if it helps or not? Thank you.

3

Hi Alina
thanks for your reply - nice to hear from you :)
apologies as usual for not hanging around the forums much and dropping by with a question.

I'll be sure to let you all know how it's working for me / if it's working.

Either way, I'm hopeful my dermatologist is working with me to figure things out - and also a good sign she had heard of EM :P !

Are there any good articles, photos and visuals, or studies on EM - and how it can present in other areas of the body? not just feet and hands? While I do experience symptoms in my feet and hands - it also seems to effect my ears and on a few occasions, my face.
which area is *most* effected by tingling, pain, burning, redness and so on - actually seems to change about. sometimes will focus up around my ears, other times - hands and fingers, or feet.

4

Here are just a few of many Articles mentioning nose and ears. It isn’t necessarily a progression from feet to hands to head. Some people start with ears and nose and face generally and never get it in their feet for instance.

http://www.erythromelalgia.org/WhatisEM.aspx

http://www.thejournalofheadacheandpain.com/content/15/1/18

http://www.merckmanuals.com/professional/cardiovascular-disorders/peripheral-arterial-disorders/erythromelalgia

5

thank you Nel :) they're some great links / articles :)

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Thank you for posting those Nel. was just about to start searching for some because I didn't know where to find them off hand. Please don't worry about poppong in and out here Meowmachine though we like it when you do!

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Naaww :) Thanks Alina !

I will keep you posted about how I find using zostrix / if it's effective etc.

8

A bit of a follow up on Zostrix - as promised.

I posted this on another EM group on Facebook - so if you have seen all this before - apologies :)

"A follow-up post after my post last week about dermatologist giving me 'zostrix' to trial.

So I have been having increasing flares past few weeks - effecting ears, face, hands and feet (sometimes each area by itself - other times a few areas effected at once).
I tired Zostrix cream 0.25 mg last night. Perhaps I used it incorrectly... but it didn't end too well.
The instructions say to use the cream and apply it daily to the effected area. The issue is that the 'effected area' covers a lot... and often will show in in different spots.
regular use of the cream is meant to sensitize nerves to a certain chemical in the body (cant remember which) - therefore hopefully nerves require less of said chemical and is somehow meant to ease nerve pain.
I'm fairly certain I've got my explanation all muddled up lol ..

So, the flare last night was pretty uncomfortable and effected the right side of my face only. It was radiating heat and felt very sensitive and a bit sore. I decide to trial the cream. it says to avoid sensitive areas - such as ears, eyes and mouth (my skin is quite sensitive in general - but i give it ago - avoiding mouth, ears and my eyes).

My dermatologist did tell me before prescribing Zostrix that some people find the cream makes them pretty sore.
It did indeed worsen pain I was in x 5 ..not only that, but it also worsened the redness and burning to the point I felt someone had a hair dryer inches from my face. OW.

Washed it off.
Am unsure what to do - apart from chat to my dermatologist again and hope that she will ave some other suggestions and continue to work with me to get some relief. She's been lovely.. so fingers crossed! "


9

first photo - flare on one side of face only - before using cream
second photo - other side of my face during same flare - not really effected apart from very small amount near forehead, under ear, and chin.
third photo - redness and burning spreads a little further up my cheek towards my nose - and the pain intensifies further.

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Dear Meowmachine,

Apologies for my belated reply. Firstly, I just want to say a little about Zostrix - a topical cream analgesic made from chilli peppers(purified capsaicin). . Capsaicin is believed to act on a substance in the body known as Substance P, which is involved in transmission of pain impulses, Thought that regular application of capsaicin (Zostrix) to the affected area will ,over time , reduce the amount of Substance P in nearby nerve endings. With less substance P present, ones pain may be less intense and in some cases there may be remission.

Regarding typical EM or classic symptoms. The school of thought was initially that EM was a localised foot/hand syndrome and of two types - this is far from the case. EM can be primary(genetic), primary (sporadic- idiopathic) or secondary( to another condition , usually autoimmune, medication , injury). It can be widespread (e.g. face, limbs, scalp, ears, feet/hands etc...) or localised (e.g. feet or hands, feet and hands etc..). Key trigger is heat intolerance(90%), but a small percentage of EM'ers also react to extreme cold too. These cold EM flares differentiate from Raynauds - an often co existing phenomenon. EM can be systemic - widespread, internal and even affecting organs. Many EM 'ers also develop ANS issues. In terms of progression , there is no hard rule as to the whys of progressive EM. I have found that most progressive forms tend to have an acute onset (2-3 months) and result bodily 'diffuse' within a short period of time. However localised and widespread EM can , of course, deteriorate and worsen in severity. Nel is correct - there is no logical progression from feet to face etc...... Another explanation for progression has been in the case of secondary EM. A worsening condition or continued use of a medication may be causing and/or exacerbating erythromelalgia symptoms

One good way of better managing EM is via minimising tactics. Alina, Nel and I often say that its easier to try to deactivate the flare than manage it. Listen to your body, keep a pain dairy, photos, and see if you can establish any particular 'avoidable' triggers say foodstuff such as deadly nightshade family - tomatoes, peppers. You are already aware of 'known 'triggers - heat (and cold), stess, anxiety, fatigue, exertion , pressure. Also stimulants (alcohol, caffeine ), diet (any toxicity, allergies?), products - creams, fabrics, activities? So- what precipitates a flare - is it just 'known' causes. Could it be a medication? Does it occur after drinking soda or coffee? EM is such an individualised syndrome in manifestation, symptomology, development, management and treatments.

So, now I have rambled on , lets address your question. Capsaicin can worsen EM because its abrasive and an irritant that instigates vasodilation. EM = over vasodilation. http://forum.livingwitherythromelalgia.org/forum/topics/capsaicin-cre....

Personally, I found capsaicin intolerable- burning intensely and producing redness, sore dry skin.

Capasaicin , however, may also help . A few of our members report that it helped ease their symptoms enormously. http://www.sciencedaily.com/releases/2015/04/150406152949.htm?utm_s...

However, you may be an EM'er who responds best to 'climatising' rather than 'cooling' EM. Using a vasodilatory cream or vasoconstrictor gel here might help - stabilising matters. It will move towards the premise that you are oscillating between these two extremes. You can 'test' whether climatisation might help you by seeing if you react more favourably to warmth when flaring (try feet in warm water - say). Or, you may get some comfort from a numbing cream or patch like one of the various lidocaine compounds . Research on creams posted on our sites. These are the links so take a quick look :)

http://forum.livingwitherythromelalgia.org/forum/topics/penetrex-vet-...

http://forum.livingwitherythromelalgia.org/forum/topics/question-abou...

http://forum.livingwitherythromelalgia.org/forum/topics/ketamine-rein...

http://forum.livingwitherythromelalgia.org/forum/topics/girl-on-fire-...

I uploaded lots of facial stuff in a reply to Wanderer last week. Heres the link. Moderators have all commented in this post, too. http://forum.livingwitherythromelalgia.org/forum/topics/red-ears-face...

Maybe your Dr would be amenable to trying something else. Most members advocate a polypharmacy approach as EM symptoms tend to be better managed as separate entities. Whilst management is mostly a case of trial/error to find what works best for you ,specific firstline therapies commonly given-

Should have any problems downloading articles just let me know . :)

Please get back with any questions.

Hope you are having a much more comfortable day.

God bless

Big hug

x

PS: Checked your profile. Could you be taking a medication thats inducing this? ADHD, Dyst etc...

Could you share your great dermatologists name and details with us for our Dr directory? I dont seen to have it anywhere. Did you pass those details onto us?

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Hi Mads,
thank you so much for your detailed reply - I really appreciate it :)

working backwards for a moment - I was on medication for my ADHD (dexdrine) however I stopped it over a year ago - after trailing it for 6 months and not noticing any huge improvements. One of the reasons I stopped taking it (apart from lack of improvement with ADHD symptoms) - was that I had a vague suspicion that it might have been making me feel worse (didnt have any of my diagnosis at that stage). I had increased heart palps, tachycardia and much worse vasodilation / flushing. Even before starting Dexdrine I had these symptoms - including the hot burning 'flushing' ; but yeah.. medication made issues I already had, - much worse.
EM flares decreased over the following month or two - so that kind of confirmed for me that it was exacerbating things a bit.
I should say though - that winter was ending - and I first experienced full-blown 'EM' last winter. I did continue to have flares during this past summer, but for some reason the frequency and intensity seems worse in winter. EM has started to increase again - now that we are headed into colder weather - and more and more places have heating up really high...
even walking from cold weather to indoors can cause problems - because returning to room temperature feels like too much of an increase in temperature / heat.
I also have Raynauds phenomenon - so im sure that factors into things as well.

So far - the triggers I have identified are:
- heat (sun, heating, warm water etc., changes in room temperature or my own body temp, excercise)
- certain fabrics / textures
- over use of area - e.g. fingers and hands, feet
- pressure - e.g. feet / walking or standing too much
- (occasionally) spicy food

It may come down to a case of management / avoiding certain things ... but that's quite difficult given that I work in dog training... which often involves exercise, standing and walking for long periods in cold or hot weather, using my hands a lot, washing my hands regularly - after working with the dogs... tendency to feel quite overheated because of exercise and body temp problems.
Avoiding spicy food - okay that's easy enough ... but the others are quite difficult ...
even going into a grocery store or shopping centre, or traveling on the train - especially in winter - they all over compensate and blast the heating .. makes these situations almost unbearable to be around long (not only for EM but the fact that I overheat and feel unwell / and autonomic system problems)..

I'm not sure how to manage / avoid all this?
I already dress in layers - usually wear pants / jeans, a singlet top, then a lightweight knit, and then pack a sweater or cardigan, and then a coat if its really cold, as well as gloves and a scarf I can put on / take off. I also make sure I have shorts when I go out - so that if my pants get too hot - I can change into shorts haha ... I look like I'm packing for a week - just to step out the door.
I also pack hat, sun glasses, *bottle of water* is a must, and sometimes a mini fan..
However all these management techniques fall a bit short.. and I still end up pretty uncomfortable.

- No food allergies either

Thankyou for the links ! they are very helpful - and will read through all of them
also - thanks for outlining the different types of treatments usually suggested / used.

Meg :)



12

While EM is predominately in the lower extremities many people have it in different parts of the body. Mine is pretty much whole body...while the most painful is in the feet and legs and hands I have it in my face, front and back of my body, arms...it is quite visible to the naked eye...worse during flares...first symptoms in 95, actual diagnoses in 2013...was a long period where I just stopped seeing doctors as none knew what it was...so far have not found a medication that works,,,too many I can't tolerate the side effects...am unable to wear any kind of shoes....live my life in slippers...not so easy during winter but moccasin type boots are ok for short periods...if I have to visit anywhere were there will be walking for more than short periods I have a wheelchair....am on permanent disability...hang in there...life goes on and we just have to cope...