Update: Too good to be true : Hi all, I was at... - LUPUS UK

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Update: Too good to be true

katidid profile image
6 Replies

Hi all,

I was at Derm for a cancer screen and to again seek out any new products or methods for treating my chronic Malar rash. It no longer comes and goes, just changes from red to violet depending on stress and sun.

I had gotten to the point of weakening so much makeup I looked painted. So I met with the NP and gave me samples of Mirvaso a new topical for rosacea in the US (not sure if it’s in the UK yet).

It blew my mind. I’ve attached a photo for you all to see. It took about 20 min to work and I put it on after my lotion and before my sunscreen.

I’m looking into financial assistance b/c it’s $500 a month. My insurance - surprise - won’t cover it and it’s not (yet) approved to treat Malar rashes. BUT, it works and I’m going to send pics to the company. Maybe, finally we can get some help!

TAP ON THE ENLARGE ICON TO SEE MY FULL FACE

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katidid profile image
katidid
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Mariposas profile image
Mariposas

OMG I have been dealing with this for 20 years .. Have spent thousands on dermatologists , creams peels ... Im going to look for this .... Thank you so much for this info ... Rt now im in the middle of a flare and it gets so much more pronounced..... Stay well 💜💜💜💜

MrsMouseSJ profile image
MrsMouseSJ

I am in the UK and was prescribed Mirvaso for rosacea. I had previously read that, whilst it can be extremely effective for constricting the blood vessels - to the point where my rosacea appeared to have completely gone, it has in a few had very undesirable after effects. This turned out to be the case for me. I used Mirvaso for 3 days and, frankly, thought that a miracle had occured. But then my blood vessels massively dilated, my face was virtually the colour of a beetroot and the burning and pain was unbelievable. This lasted for 5 days, then things slowly faded - to much worse rosacea than before. Eventually I went for IPL (light therapy), things were so bad. So I won't touch Mirvaso again - although I realise I am probably in the unlucky, very small minority for whom it is not suited.

katidid profile image
katidid in reply to MrsMouseSJ

That’s terrible! Sorry to hear that. The only side effect I’ve had is localized itching. One time we noticed where I didn’t have it on a rash popped up. Went away after a couple of hours. Other than that seems to work. It’s interesting because what you describe is what happened to me on other treatments and anything but two lotions. Guess our skin is just so sensitive. Do you find you have the same issue with having to be super careful with all products for your face?

MrsMouseSJ profile image
MrsMouseSJ in reply to katidid

Oh yes! It's so hard to find things that don't cause a reaction - cleansing has been a particular challenge. Thankfully a local company here now makes a natural, palm-oil and nasties free soap which really agrees with me.

Back to the Mirvaso, it's great that it's helping you so much and the pics are impressive. I merely posted my own experience as a caution/reminder to future users - that it is probably worth trying a small test patch for a few days before applying to the wider face. It's potent stuff - works great. But can also have equally strong side effects if you happen not to suit it!

katidid profile image
katidid in reply to MrsMouseSJ

Just happened to me! Woke up to a crazy red/violet rash in the areas I had applied it. Much worse than my normal Malar and not the shape of it at all! Night before last woke up in the middle of the night to use the potty and saw in the mirror a rash around all my face except the Malar area. Think you’re right. I’m only going to use this for aesthetic emergencies. Super bummed! Was looking forward to not having to wear so many layers of makeup :(

MrsMouseSJ profile image
MrsMouseSJ in reply to katidid

Oh, I'm sorry to hear this. Wearing layers of make up is no fun at all.

I wonder how many actually react like this? The literature with the tube of Mirvaso listed it, I think, as a rare side effect. But one online forum for people with rosacea had a lot of people complaining about going bright red/purple. I decided to try it anyhow as one you never tell whether that will be the case for yourself.

I don't know how you are fixed financially, etc, but intense pulsed light (IPL) has been such a saviour to me and might be one to consider. Given the level of my flushing I was referred on the good old NHS, so it cost me nothing. However, if one were to pay here it would around £100 a session and I would have needed 2/3 sessions - and I had severe reddening/visible veins on my cheeks. Of course, there is the Lupus and light issue to consider but the IPL treatment I had was outwith of the UV spectrum.

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