Think I have early rhinophyma? Please help

[fed_up]

I have had mainly vascular type rosacea for years. I would describe it as fairly mild in that it's easily covered with makeup, and there are large portions of the day when my skin looks fairly "normal", though it tends to get redder in the evening. In the last few years i have noticed that my nose is swelling. The tip is changing shape and becoming more round looking and larger and I have red blood vessels on my nose that weren't there before. It has also become unbelievably oily, especially in the morning. It swells and goes back down several times within a day and also gets a crevice down the centre of the tip when it's swelling.

Sounds like possible rhinophyma right? Especially with my rosacea history. After waiting a year for an appointment because of Covid I finally got to see a dermatologist on the NHS ( I'm in UK). He told me that it definitely wasn't rhinophyma and that my nose was simply changing shape with age. This makes no sense as like I said it swells and goes back down and swells again within a day. He prescribed me ivermectin for my rosacea and sent me on my way. The ivermectin isn't helping, it has been 3 months now.
HAs anyone been in a similar situation? It's so hard to find accounts of early rhinophyma online, especially from other women. I'm feeling very alone and worried.
I'm 34, female. I also have some hair loss for a few years and mild but persistent acne on my body. I've been tested for Lupus but got the all clear.

[mirradodga]

You may want to look at accutane ( low dose ) but it is difficult to get UK derms to prescribe and you have to be insistent telling them that ivermectin is not
working and anything else you have tried has no affect like soolantra, finacea etc. With accuatane ( isotretinion in UK ) it shuts down the sebum glands which addresses the oil issue thus helping with swelling. Do your research on low dose isotretinoin/Rhinophyma and you will see lots of posts how it has helped with issues very similar to yours. The only issue will be is convincing a UK derm to prescribe especially as the derm you saw advised it was not Rhinophyma so you may want to give it a month then book another GP appt and tell them you have exhausted all avenues and still had no success so want to give iso a go as last resort. Hopefully you can then get referred for another derm appt for a second opinion who may indeed think that Iso is worth a try

Good luck

[fed_up]

Thank you for the reply. I am going to go private as this is causing me too much emotional distress to wait for another referral. It's just hard to know where to go as I don't trust most dermatologists to know much about rhinophyma since it seems so rare and poorly understood. I think low dose isotretinoin could be a option, wondering if Spironolactone could work in the same way with the excessive oiliness.

[ElaineA]

I have had mainly vascular type rosacea for years. I would describe it as fairly mild in that it's easily covered with makeup, and there are large portions of the day when my skin looks fairly "normal", though it tends to get redder in the evening. In the last few years i have noticed that my nose is swelling. The tip is changing shape and becoming more round looking and larger and I have red blood vessels on my nose that weren't there before. It has also become unbelievably oily, especially in the morning. It swells and goes back down several times within a day and also gets a crevice down the centre of the tip when it's swelling.

Sounds like possible rhinophyma right? Especially with my rosacea history. After waiting a year for an appointment because of Covid I finally got to see a dermatologist on the NHS ( I'm in UK). He told me that it definitely wasn't rhinophyma and that my nose was simply changing shape with age. This makes no sense as like I said it swells and goes back down and swells again within a day. He prescribed me ivermectin for my rosacea and sent me on my way. The ivermectin isn't helping, it has been 3 months now.
HAs anyone been in a similar situation? It's so hard to find accounts of early rhinophyma online, especially from other women. I'm feeling very alone and worried.
I'm 34, female. I also have some hair loss for a few years and mild but persistent acne on my body. I've been tested for Lupus but got the all clear.

Do you have any gut issues? Helicobacter pylori is a bacterial infection that has been shown to cause rosacea.Small Intestinal Bacterial Overgrowth (SIBO) and Small Intestinal Fungal Overgrowth (SIFO) are very strongly linked to Rosacea in multiple studies. SIBO/SIFO have the same symptoms and may occur together or separately. Both cause Rosacea Subtype 2 with papules and pustules that may be misdiagnosed as acne and may also appear anywhere on the body with oil glands. Blood vessel issues are common with this. I found one medical study with 6 patients with rhinophyma. Patients were tested and divided into 2 groups, those with Helicobacter pylori infections and those with SIBO. After treatment with the appropriate antibiotic, the majority of both groups improved dramatically.

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4315682/

[elleng]

I am female and have early rhinophyma, diagnosed many years ago but in remission also for many years until it flared again recently.
I paid privately to see a dermatologist as doctors were busy after the pandemic. What a waste of money that was he basically wrote a prescription, spoke very few words.
I had and have learned more from the internet.
He didn't mention foods that can affect us nor sunshine etc. He told me nothing except it was early and could take ten years to badly affect my nose. He was wrong it has affected my nose.
It's all very depressing and although there is good information on the net it's also very confusing as one article will say one thing is good but another will say it's bad. I know we're all different and will be affected by different triggers.
Well I suppose I've written this as a way of introduction and just saying there are more of us women with this condition.
At the moment it only seems to affect my nose and flushing of the cheeks but no pustules.
Wish a cure wpuld be discovered for us all.