Visiting Dr. Chu in London

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 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.

From East Acton station it's only a short walk to Hammersmith hospital. I stayed the night in the housing accommodation next to it. It's meant for hospital staff and

outdoor patients and costs around 95 pounds per 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.

When I saw Dr Chu he was very friendly and said that it had been a while, 2010 he believed? I really like his accent and way of speaking, it is a very upper class type of English, very pretty sounding. We chatted for a while about how things had gone the past years with me, in terms of rosacea symptoms and medications. With regards to pregnancies and rosacea he said that most females do fine during pregnancy, although some do get worse (usually not in the aftermath), but it can also in fact go temporarily better. He sees the same with eczema patients and this might be linked to the lowered immune system during those 9 months. However, he doesn't have many young female rosacea patients, mostly women who are a bit older and recently he noticed a big surge in younger guys with flushing and redness or paps in his practice. Often prescribing clonidine eliminated the biggest part of the flushing problem afterwards. I told him that I am not doing so good in winter and quite a lot better in summer, and he referred to another patient of his, who became a friend of me over times as we have a very similar case of rosacea and are both around the same age. He mentioned how he was always stunned that she also improves so much when she goes on holidays. He found that very typical, as usually he sees patients getting worse in the sun or when it's warm in summer. He recently had a new patient who developed rosacea out of nowhere after traveling through Vietnam in the hot season there for 2 months, and the heat triggered her rosacea quite severely apparently. I remember being in Turkey during a heat wave (50 degrees/122 Fahrenheit all day and even the Turks themselves were huffing and puffing and I came back so much worse rosacea wise). But that other patient and I seem to be doing better in (not outrageously hot) summers nowadays. Maybe the confusion also came from the word sun, as I'm also getting worse in the sun, but I explained that sunbathing the rest of my body (and having my face in the shade) seems to lower the redness and flushing to some degree for me. I told him about my low vitamin D levels and how I think that using my vitamin D lamp or sunbathing might raise those levels a bit and in turn lowers inflammation, possibly, and he was interested in that and said he knew of the connection. Why didn't I take vit. D supplements? I told that I think they make me flush much more and that I am doing a lot better when I use the lamp, and then better than that again when I sunbathe. He suggested that might come from the full spectrum of radiation that the sun provides, compared to the narrow UV radiation from the lamp. But I should be diligent when it came to protecting my face from the sun he reaffirmed. He had suggested some sort of light therapy for her, purely based on the fact that she improves so much on holidays and assuming for now this might come from the sunlight exposure on her body. I have read from many patients that they miraculously get some break from the flushing and redness when on holiday and there have been many theories on this. Perhaps relaxation is another factor in play, or the more stable and higher temperatures.

We also discussed my medication use and I told him that every time I try to stop the remeron, it goes well for about 2 weeks and then it is a big inferno again. He realized this, as she has the same problem, as well as some other severe flushers who use it. It's great of course that it works, but I don't like the weight gain issues it brings. I asked if there are medications he can prescribe perhaps that will make me go back to my old weight but he said there aren't, and the ones that exist give pretty bad side effects (like malnourishment and bowel issues) or are totally ineffective. So I will have to keep exercising, dieting and putting up with increased appetite and changed metabolism I fear. In the end however the reduced flushing and good mood weigh up (lol) to the down sides. Still... At 15 mg remeron works best for my flushing, but at this dose it does very little for the occasional feelings of doom and gloom and general pessimism. Unlike 30 mg and upwards (above 30 mg is fairly useless for rosacea however). I felt really good at 30 mg, but the flushing is more prominent then unfortunately.. I also told him how the antimalarials don't work for me; that mepacrine makes me flush bad, all 3 times that I tried it now (which surprised him a little bit as she is doing really well on it, among others, and we generally have comparable rosacea), and that the plaquenil did seem to make me more pale but that the eye burning is unbearable for me. He said Yes yes, that is unfortunately a more common problem with virtually all the antimalarials (except mepacrine as far as I know), that they are very harsh on the eyes.

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 azithromycin 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 also 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.

-Indomethacin, 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.