neurogenic rosacea -- my battle.

[laser_cat]

I'm about to start Mexeletine, so interesting to read your experience with this. How have you found the gastro effects of mexeletine, as this often seems to be the reason people stop the drug, rather than necessarily that it doesn't help with flushing.

For post-exercise or hot-day flushes, I've found gabapentin quite helpful - it's a lot harder to have a really severe flush when taking it I find.

That's great you find gabapentin helpful. I might retry it. I have tried it in the past and it caused increased blood pooling for me. But possibly I could handle it better now. Even though I didn't respond, my sense is that it does help most people with neuro rosacea.

I didn't really have any bad side effects from mex. - which I attribute to my super slow rampup. Don't take a pill right before laying down though - that would give nasty heartburn! (I wait an hr after my last pill)

Good luck.

[laser_cat]

How do you react to heat, wind, stress, arousal etc? Also, can you have that trobbing even if you´re not that sigficnially red?

I flare (a pulsing style flushing, swelling, burning) or if I'm already flaring have increased flaring. I think my sensory nerves are overly activated (heat, "time of day" flaring) as well as sympathetic nerves (talking to anyone for example, thinking critically instead of passively reading).
For wind I don't flare immediately, but will flare on rebound as I warm up.
If I am throbbing, I am sure to be red or about to get red. HTH

[laser_cat]

Anti-inflammatory / immunosuppressive route

Had an interesting derm appt, would like to share. (some of this is repetitive)

I asked: If SFN is driving my bad face, why don't my symptoms start/be more severe in the feet?

He said (summarized): Unknown, but in diabetic neuropathy - the most common type of neuropathy - the feet can get numb, but the itch can be everywhere/generalized. So where the itch small fiber nerves are affected, is actually different from where the small fiber pain nerves are affected. And so the same cause of neuropathy can have anatomically different sensations at different sites. The specific families of nerves have yet to be mapped. But I can see pain (being length dependent), itch (being driven by other factors not yet understood), and the burning heat sensation you feel in your face each being mediated by different nerve subtypes. I see sodium channel blockers typically working much better for feet than faces, but right now that's a "black box." [note: Na channel blockers work much better for my ears than face]

Since I've tried all available neuropathic and vasoactive drugs, and nothing "quite" helps (if it helps one aspect, but makes another worse..), he thinks a chance we're not addressing the root of the problem (for me). Which he tends to think would be "inflammation" (details unknown) irritating the nerves, causing the small fiber sensory nerves to dump out their "gunk" (neurogenic inflammation like vasodilating substance p). The "inflammation" would also be preventing the small fibers from growing back. The hope, is that once the inflammation is removed, the small fibers can grow back.

He says that neuros like to use IVIG (anti-inflammatory, non-immunosuppressive) and steroids. He does not like steroids for me because I am so vasodilated + steroids can cause flushing, making it hard to tell if there is a positive difference (and side effects, sustainability). Neuro's also use azathioprine and cellcept (immunosuppressives), but not so much the methotrexate (immunosuppresive) often rx'ed in dermatology.

I asked: Why don't I just burn with the SFN, why is there a blood pooling component?

his response: Small fiber (sympathetic) nerves can't adequately control blood vessels, as evidenced by tilt table test (blood pressure drop + blood pooling in your hands/feet).

(adding to his response): There are small fibers with various purposes: some to control sweat, some to control vasomotor function (as he referenced), and some to sense heat/pain/inflammation.

I asked: Can you explain to me again why you don't think a biopsy of face would be helpful? I understand there is no normative data for nerves in the face. What if you looked for connective tissue problems, mast cells, immune cells?

his response: I have taken biopsies in patients like you and I haven't seen say, immune cells clumped around the nerves, or anything unusual like you mentioned. That would be interesting if I did, though. The biopsies I have all taken have all shown the same thing - perivascular inflammation - and have not been helpful in treatment strategy. The inflammation can be anywhere along the nerve pathway, too. For example I biopsied a patient with erythromelalgia on her feet where her pain was. No real inflammation, just neuropathy. I biopsied higher up in the sural nerve - lots of inflammation. I started her on steroids and her symptoms resolved.

*Starting Imuran (azathioprine), still fighting for higher dosed IVIG

[Rubydo1]

Anyone tried cod oil for this ?

[antwantsclear]

Had an interesting derm appt, would like to share. (some of this is repetitive)

I asked: If SFN is driving my bad face, why don't my symptoms start/be more severe in the feet?

He said (summarized): Unknown, but in diabetic neuropathy - the most common type of neuropathy - the feet can get numb, but the itch can be everywhere/generalized. So where the itch small fiber nerves are affected, is actually different from where the small fiber pain nerves are affected. And so the same cause of neuropathy can have anatomically different sensations at different sites. The specific families of nerves have yet to be mapped. But I can see pain (being length dependent), itch (being driven by other factors not yet understood), and the burning heat sensation you feel in your face each being mediated by different nerve subtypes. I see sodium channel blockers typically working much better for feet than faces, but right now that's a "black box." [note: Na channel blockers work much better for my ears than face]

Since I've tried all available neuropathic and vasoactive drugs, and nothing "quite" helps (if it helps one aspect, but makes another worse..), he thinks a chance we're not addressing the root of the problem (for me). Which he tends to think would be "inflammation" (details unknown) irritating the nerves, causing the small fiber sensory nerves to dump out their "gunk" (neurogenic inflammation like vasodilating substance p). The "inflammation" would also be preventing the small fibers from growing back. The hope, is that once the inflammation is removed, the small fibers can grow back.

He says that neuros like to use IVIG and steroids. He does not like steroids for me because I am so vasodilated + steroids can cause flushing, making it hard to tell if there is a positive difference (and side effects, sustainability). Neuro's also use azathioprine and cellcept, but not so much the methotrexate often rx'ed in dermatology.

I also asked: Why don't I just burn with the SFN, why is there a blood pooling component?

his response: Small fiber (sympathetic) nerves can't adequately control blood vessels, as evidenced by tilt table test (blood pressure drop + blood pooling in your hands/feet).

(adding to his response): There are small fibers with various purposes: some to control sweat, some to control vasomotor function (as he referenced), and some to sense heat/pain/inflammation.

*Starting Imuran (azathioprine), still fighting for higher dosed IVIG

Have you discussed any alternative sodium channel blockers to mexiletine? You said you got some benefit from this I think. In the UK mexiletine is very hard to obtain so interested what other options might be seen as comparable.

[laser_cat]

Have you discussed any alternative sodium channel blockers to mexiletine? You said you got some benefit from this I think. In the UK mexiletine is very hard to obtain so interested what other options might be seen as comparable.

Yes I've tried several - anti-seizures are topamax, tegretol, trileptal, zonisamide; topicals benzocaine 20%/lidocaine 6%/tetracaine 4%, amitriptyline 6%.

For me the oral sodium channel blockers are all similar - they make me colder, and increase night flaring threshold. If I take a pill (150 mg mexiletine) right when my face starts feeling like it's blistering up on the surface at night, it helps to calm it down significantly (30 min or so). If I take a pill (150 mg mex) when my face feels like it's oozing out with blood during day, it also helps within 30 min to calm it down. One time I tried a sip of alcohol - alas, immediate flaring - and I took a pill (150 mg mex) which almost immediately shut down the reaction. So this is great, but over time sodium channel blockers swing me over into "too cold burning / stabbing" territory - and I need something else to patch that up...

Mexiletine is the most "efficient" one of the bunch, I think. But I know some people like tegretol/ trileptal. I know someone on 600 mg oxtellar w good effect for face.

Topicals on my ears are very good though.

This is just my personal experience. I still take a low dose mexiletine (and an extra one at night, if needed) and it helps but I keep it below the "too cold burning" threshold.

[antwantsclear]

Yes I've tried several - anti-seizures are topamax, tegretol, trileptal, zonisamide; topicals benzocaine 20%/lidocaine 6%/tetracaine 4%, amitriptyline 6%.

For me the oral sodium channel blockers are all similar - they make me colder, and increase night flaring threshold. If I take a pill (150 mg mexiletine) right when my face starts feeling like it's blistering up on the surface at night, it helps to calm it down significantly (30 min or so). If I take a pill (150 mg mex) when my face feels like it's oozing out with blood during day, it also helps within 30 min to calm it down. One time I tried a sip of alcohol - alas, immediate flaring - and I took a pill (150 mg mex) which almost immediately shut down the reaction. So this is great, but over time sodium channel blockers swing me over into "too cold burning / stabbing" territory - and I need something else to patch that up...

Mexiletine is the most "efficient" one of the bunch, I think. But I know some people like tegretol/ trileptal. I know someone on 600 mg oxtellar w good effect for face.

Topicals on my ears are very good though.

This is just my personal experience. I still take a low dose mexiletine (and an extra one at night, if needed) and it helps but I keep it below the "too cold burning" threshold.

Yeah I was recommended tegretol to try by a dermatologist interested in erythromelalgia. I think that may be worth trying, given how difficult mexiletine is currently to get in the UK. What topicals do you use on the ears? I find botox and treating for demodex mites (zhongzhou cream) most helpful for the ears. By treating the demodex mites, I find my skin on the ears is much more able to tolerate topicals etc, and I don't get the burning following the cooling.

[owldog]

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[antwantsclear]

Good luck with the Imuran laser cat. I really hope you get positive results from it.

I've finally been seen by a rheumatologist who thinks the flaring/ EM may be secondary to an underling autoimmune disorder. He has recommended plaquenil and possibly low doses of steroids to see how I respond. I think like you, I'm going to pass on the steroids as I'm terrified of a worsening of the flushing and swelling. He also suggested immunosuppressives.

Are you still on the plaq? If you are has it been helping at all?

My immune system is unfortunately in overdrive and I cannot seem to tolerate any medications. I also vasodilate to everything. I flared really badly recently to vitamin c and stupidly took a 20,000iu gelcap of vitamin d (my levels are very low) the other week. So guess what- a whole 2 weeks of flushing and flaring every night waking me up. Strange thing is I tolerated the 20,000iu this time last year when I started getting these symptoms so something must have progressed for the worse in the last year.

I'm seeing the neurologist tonight so going to ask about mexiletine or any alternatives.

Good luck with it and please keep updating!

I also flush in response to vitamin C and D. I'm supposed to be low on D but then so is the majority of the population, and they survive!

[laser_cat]

Good luck with the Imuran laser cat. I really hope you get positive results from it.

I've finally been seen by a rheumatologist who thinks the flaring/ EM may be secondary to an underling autoimmune disorder. He has recommended plaquenil and possibly low doses of steroids to see how I respond. I think like you, I'm going to pass on the steroids as I'm terrified of a worsening of the flushing and swelling. He also suggested immunosuppressives.

Are you still on the plaq? If you are has it been helping at all?

My immune system is unfortunately in overdrive and I cannot seem to tolerate any medications. I also vasodilate to everything. I flared really badly recently to vitamin c and stupidly took a 20,000iu gelcap of vitamin d (my levels are very low) the other week. So guess what- a whole 2 weeks of flushing and flaring every night waking me up. Strange thing is I tolerated the 20,000iu this time last year when I started getting these symptoms so something must have progressed for the worse in the last year.

I'm seeing the neurologist tonight so going to ask about mexiletine or any alternatives.

Good luck with it and please keep updating!

Hi owldog -

I am still on plaquenil. It doesn't really help my face but it does help my neck swelling / heat. No side effects. My understanding is this much weaker in potency than say Imuran. I am not sure how all these "immune" drugs compare with one another. One doc said they have different specificities in addition to different strengths.

Yeah, I flare with vit D as well. It didn't feel like a vasodilator - but felt like it lowered my threshold to everything. My guess is it might be increasing inflammation for us in a counterproductive way. I can take 1000 IU / day. I'm so sorry you had that experience with the 20,0000 IU.

my derm told me that he gets majority success with trial and error amongst: gabapentin, lyrica, amitriptyline, SNRI, mexiletine, baclofen, propranolol. I think he quoted a 70-80% success rate and he likely has the most experience w/ neurogenic rosacea (and also ample exp. with EM) in US. I listed the order of drugs he had me try on the second page of this thread, in case that is helpful for you.

good luck. keep updating yourself, too.

[laser_cat]

Yeah I was recommended tegretol to try by a dermatologist interested in erythromelalgia. I think that may be worth trying, given how difficult mexiletine is currently to get in the UK. What topicals do you use on the ears? I find botox and treating for demodex mites (zhongzhou cream) most helpful for the ears. By treating the demodex mites, I find my skin on the ears is much more able to tolerate topicals etc, and I don't get the burning following the cooling.

I use compounded amitriptyline 6% / diazepam 2% on the ears, 2x/day.

[Rubydo1]

What I find is the frustration of how little rosaceans want to do something about this for themselves and band together and do something about rosacea research. They opt out that some magic pill or topical will be found to resolve their issues. Do they want to band together and do something about encouraging novel rosacea research?

Rosaceans allow the NRS to spend 60 cents of every dollar donated to be spent on two private contractors owned by the director of the NRS and only spend 10 cents on rosacea research. No one cares. This is frustration to me. Rosaceans want someone else to do it for them. I have brought together over 1170 members into the RRDi and hardly anyone posts. I have made it so that anyone can hide behind a cryptic display name and never reveal their identity or contact information and still no one hardly ever posts. And what about funding their own rosacea research? Last year the RRDi received absolutely no donations. In 2016 if it wasn't for Demodex Solutions we would be close to running out of money. This year we have had $60 donated from three contributors. The RRDi can't fund rosacea research unless we get volunteers and donations to do this. Wouldn't it be nice to fund your rosacea doctor say $15K to do some novel research on neurogenic rosacea? You try to get the money to do this, and I can tell you from experience that this isn't easy to do.

If others don't volunteer and work together for rosacea patient advocacy then rosaceans deserve what they get with the NRS and the AARS which are the only non profits doing any rosacea research. And what kind of research do these organizations do? Who donated primarily to the these organizations? Pharmaceutical companies. And what kind of research do they engage in? You guessed it. Here is a quote from my book I wrote in 2007 on page 82:

"Dr. Kligman mentions the 'indifference of the National Institutes of Health, which with an annual budget of nearly 30 billion dollars, has not seen fit to fund a single grant for the investigation of rosacea.' Dr. Kligman also says that most research done on rosacea is by the skin industry which is 'voluminous literature, mainly focused on treatments sponsored by commercial interests; perhaps not the most credible source of unbiased research.' ”

If rosaceans what to be novel and fund any kind of research they want to engage in they will need to be united, volunteer and obtain donations to be used in novel rosacea research. Lizzy, are you able to volunteer? Sure could use the help.

Hi I joined and I’m in awe of the work you do, but I’ll be honest and tell you why I don’t visit.
It’s the website I find it not very user friendly. Have you thought about linking to Instagram and Facebook.
If you use Instagram you could link to etsy to sell or raise money for rosacea research.
And maybe also Seborrhoeic Dermatitis research as I find it incredible that no one has developed a face treatment that doesn’t involve harsh chemicals. Washing your face with shampoo is impossible if you have extremely sensitive skin.
But I truly think you need to use a different platform.

[owldog]

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[laser_cat]

Thanks laser cat! 70-80% success rate is amazing! I will be so happy with that. That's definitely making me feel hopeful.

The neurologist is now trialling me on Cymbalta/ duloxetine. If this doesn't work then next up gabapentin and then Mexileitine. He also mentioned Effexor if the Cymbalta doesn't agree with me. But I'm guessing they're about the same?

He said he can get hold of the Mexelitine. It's very just costly here in the UK privately but it can be done on the NHS so there'll be a bit of a wait for it. He also reconfirmed his diagnosis of EM. The flaring has spread unfortunately to my knees now.

Are you still on the Cymbalta? If so do you take it at night? I'm going to be taking it along with the mirtazapine. I'm really hoping it helps with the night/ sleep flaring.


Antswantclear, I'm considering botox as well. I understand it's been helping you? The neurologist I'm seeing can do it but he normally does it for migraines so I'm not sure he's familiar with doing it on my cheeks. Can you recommend anywhere that is experienced at doing it for rosacea in the UK?

Yes I take cymbalta 80 mg in the morning. It helps - ideally I would take 60 mg x2 so I could get help in the evening, but when I tried that (and it did help with evening) I had total insomnia. Makes some people tired, others have more energy.

[antwantsclear]

Yes I take cymbalta 80 mg in the morning. It helps - ideally I would take 60 mg x2 so I could get help in the evening, but when I tried that (and it did help with evening) I had total insomnia. Makes some people tired, others have more energy.

Are you taking cymbalta instead of mirtazapine? One of the reasons I stopped taking mirtazapine was hair loss - have never had a problem again with this since I stopped it.