Last week I went to London to see Prof. Tony Chu at Hammersmith Hospital. I saw him in 2005 and 2006 and then every 2 years approximately. Initially I came in terribly flushed, constantly, and was at my wits end. I had already booked a flight to the US to see dr. Soldo for more IPL treatments, in the hope of some relief. But I wasn't feeling very comfortable about that, given the first IPL in the UK that made me so bad. A friend invited me over to the UK to see his dermatologist (Chu), to find out if there were other ways to control my rosacea, before jetting off that far for more IPL. He prescribed me a cocktail of meds, and it helped me so much. Clonidine, propranolol, remeron and Xyzal later. I still use these meds today, but I like to keep seeing him now and again, for updates and to stay in the system so to speak. I also still look out for better meds or treatment options, as my rosacea is still very present, although easier to live with now.
I had an appointment on the 14th of March and flew into London in the morning. I often find that when I skip meals, it is easier for me to avoid flushing, so I ate nothing and got a priority boarding pass. With Ryanair that only costs an extra 5 euro, but it enables you to avoid the long queues and pushing people. It's always so hot in those airports so I usually hang around the entrance in the fresh air (stay clear of smokers who gather there together) with a book as long as possible, then go through security and avoid the long waiting list and find a spot in the back of the plane (unspecified preference), and point all the small air fans in the panels above my chair and the other 2 chairs towards my chair :) After landing in London I bought a ticket for the train and drove to Liverpool Street station. Still not flushed, although a bit pink and had a puffy face too from a few bad days prior. (How I hate the puffiness of rosacea). I asked for some ice cubes at a fast food counter there. I usually say that I have a toothache or something along those lines (people instantly make the connection with the ice cubes then and seem more sympathetic) and even though they generally don't want to charge me anything for it, I give some proper tip to the coworker in question. I think mainly because I want to pay off the feeling of being needy and weird, somehow. In the tube to East Acton it was hot and sucking on some ice cubes helped to stay cool.
I am not a massive London lover for some reason (with exception of area's like Camden and Holland Park perhaps, although those were one time things), but I do love the odd characters, the fashion sense and the humor of the people there. In the subway, on one bench sat a woman in black, with gothic eye make up style, with a big hand mirror who was retouching her make up for the entire duration of the trip, and without any scruples or sense of discomfort. Next to her sat a girl with purple hair and close to her a girl with wavy long hair and a beanie hat on and only when she turned her head I could see that half of it was bright blonde and the other half was darker and golden colored. Perhaps this is omnipresent in the UK, but certainly not on the mainland. Loved the punk like outfits. Later a perfectly groomed young British gentleman with a bowler sat down at her place and looked so impeccable and smart. I love hats and wished everyone still wore them outdoor.
night. You get a small apartment like room for this, with a kitchenette, fridge, shower and tele. I like its proximity to the hospital and it is only a few subway stops from Notting Hill. I was supposed to see Dr Chu at 5.30 pm, and checked beforehand with the secretary if he was on track with his appointments. Experience is that he can run late, especially at the end of the day, but she said he was surprisingly good on time, so to not come late myself. However, when I arrived at 5.25 and rechecked, something had come up for him to run late nevertheless :) It is quite warm in his hospital wing and stuffed with indoor plants, which all make me flush. I took an extra Xyzal tablet but had managed to not be flushed all day except for rosy and a bit warm in my face (but not hot and burning and feeling stressed out and rushed accordingly) so I didn't want the last bit of waiting ruining all that. There is an outdoor terrace next to the waiting area and like usually I waited out there, with a magazine and all the while keeping an eye on the waiting room. Odd, but well, I try to behave like it's the most natural thing in the world.
I asked him if I could try a local antibiotic called Rifaximin. I read that it can lower inflammation and helped some p&p versions of rosacea and Mistica emailed me about this as well. He said yes and found it interesting, as he already uses it sometimes for patients with acne, and it significantly reduced the acne and overall inflammation for them. But he hadn't thought about trying it for the vascular rosacea patients, but was interested if it would do anything. In theory that seemed a good option. And because I have (mild) colitis, it is even more interesting for me, as it might also help with that. I'm usually doing very bad while on antibiotics, like all the tetracycline ones and azithromicin also was a nightmare, but the Rifaximin is supposed to only work locally in the bowel and not enter the blood stream in the same intensity as regular antibiotics do, so fingers crossed. I can try it for a month. I also asked about another anti-inflammatory, in the category of the antimalarials. I used diclofenac for a long time. He suggested I try another NSAID, as it works a bit differently than diclofenac, called Indometacin.It helps reduce inflammation and I can try it for a month and see how that goes. Hopefully it is less strong on the stomach and bowel for me. So, two more new things to try.
I asked Dr. Tony Chu also about low dose accutane (again..), as I had heard so much success stories about it, but he said he doesn't suggest it to the flushing subtype, and also not as a first or second line treatment for papular rosacea. He also said I would probably flush more from it then I do now. I want something that reduces skin inflammation, that doesn't flare me, but accutane is a big risk he said and will most likely make me worse, in terms of flushing and burning. I won't take the gamble, considering he has consistently gave me answers along these lines over the years when I brought it up again.
After the consultation I went to the hospital pharmacy, who were about to close, and they did have the rifaximin but the Indometacin had almost reached the expire date and I preferred a months supply that would last me a bit longer. The girl helping me suggested that I'd go to the Charing Cross Hospital, a few tube stops down the road the next day. I spent the early evening in Notting Hill, eating somewhere and walking around in the area.The next morning the short walk and subway ride to the Charing Cross Hospital turned out to take me 2 hours and then I had to wait a full hour for my medication. In itself not a big problem but I still had to travel back to Stansted airport and fly back home, but in the end I just made it. And I got my meds:
-Rifaximin (Rifampicin) 150 mg capsules, one capsule taken twice daily, 30-60 minutes before food.
-Indometacin, 25 mg capsules, one capsule taken three times a day, with or just after food.
Because the Rifaximin capsules have fluorescent colors and can stain the urine according to the pharmacist and the leaflet, I will buy some more neutral capsules first to put the powder in. After flushing from the mepacrine (which has bright yellow dye) I rather try this med on the best terms and conditions, given I only have it for one month. If it makes me flush when I take it now in the old capsule, I am not sure if the flushing comes from the capsule or from the drug itself.