I've been putting this write up off for a while. On the other hand I've seen others share very personal stuff here and I think it might be therapeutic...IRL I notice how much talking about it improves at least my mental state of being. So here it goes.
I was born with eczema. Lots of people have it in some form or the other. Standard treatment is steroid cremes. Some people out grow the disease. With me it's been getting steadily worse over time. The cause (at least for me) is very clearly auto-immune. My body basically attacks itself, specifically the skin. It becomes itchy, I sratch, bacteria get in and infect the place, regularly resulting in quite enormous inflamed bumps in random places. This ranges from a few centimeters to half of my face. When it's in the neck, it becomes hard to turn my head. Once it was actually pressing on my wind pipe. Stuff like that. The skin is very dry at times, red and raised, warm and itchy.
Last summer was very hot in The Netherlands. Basically I spent 4 weeks in bed, because anything else was unbearable. When I returned to work (teaching) in September I was not well rested and had not had my mental 'reset'. I had also lost my faith in dermatologists. So as the symptoms kept getting worse and worse, I did not go see the dermatologist. They'll just give me another creme, it'll work for a bit and then everything is back to being F'ed up, so why bother. I tried to ignore the urge to scratch but as soon as I got home from work I'd lose control. I'd regularly scratch my face raw in a towel for instance. The mechanism is this: for a brief moment you feel release and the pain from the scratch drowns out the itch. 10 seceonds after you stop you start to feel very sorry though, because of the damage done to the skin that will keep the cycle going. A few times a day I feel myself heating up from the inside and I go off, unless there's somebody else around...social pressure helps.
Something else...for some years I've rationalized the state of my skin: yes it feels nasty, there's some redness but in all it's not that bad. That myth shattered a bit over the year. In one incident some students sent anonymous e-mails to teachers with weird remarks. I got some about the skin. In another incident, where I crossed the street, some random dude in a car yelled at me and basically mocked my skin. Stuff like that has been happening, also adding to the psychological stress.
My physician suggested I use prednison when things get really rough. About half a week on a medium dose usually was enough to get back to a doable situation. I've done that about 7 times in two years. Starting december 2018 I started noticing weird stuff with my eyes. Over the past 3 months I've become very sensitive to light and I can barely read. Turns out I've developed cataracts in both eyes...I'm 36. Visus in the left eye is down to 20%, right is 60%. It's a known side effect of the prednison, but this is extremely fast and progressive. So two operations are coming. It's a pretty standard procedure but the fact that my skin disease has indirectly damaged my previously better than 20/20 vision is a real psychological hurdle.
Two weeks ago I finally got a appointment with the dermatologist again. Basically, there was not a healthy inch of skin left, something had to be done. I'm now on an even more aggressive type of steroid creme (dermovate). Within 12 hours of first applying it the lights went back on in my head. The creme suppresses the immune system, blocking the reaction and thus stopping all the signals that it produces from clogging up my brain. For the first time I really realized how much brain power was being occupied by coping with the dermatitis. I've been very lucid for two weeks now, but was numb for over 6 months. No other way to describe it.
I hope I can start being creative again real soon. Because of the cataracts I basically see jack shit during the day without wearing two sunglasses at the same time. Night time is much better. Road cycling and fine soldering will have to wait until after the surgery. I've started UV-B therapy for the skin, to see what the effects are and I'm going to discuss long term plans with the dermatologist soon. Three years ago, she mentioned that research was expected to find the cause of chronic eczema in 10 to 30 years. Two weeks ago, the said 1 to 3 years. There's new treatments but they are quite expensive so access to them is restriced.
Sorry for the long post, hope it's not a bother. Long story short: the eczema sucks, but I've come to realize that it also comes with a psychological component that, for me at the moment, is equally alarming.
That sounds tough to deal with. Hopefully the new treatment will keep working for you and you can get skin and mental health back to healthy in the long term.
I'm wishing you all the best. My wife and children have eczema, but not to the debilitating extent of yours, so I know but a fraction of your suffering.
I can tell that what you are going through sucks.
Thank you for sharing your experience.
Sorry about what you are dealing with. Students can be real punks sometimes too. Hopefully you can find decent treatments that work consistently. The good news is that you are at least aware of the psychological hardship associated with eczema and can try to find ways to cope with that instead of keeping it all in or exploding. Wishing you the best!
That really sucks but man, but I have to tell you, big kudos to opening up about the struggle. I know people with eczema and it gives me tremendous insight into the condition. I'd always assumed it was a major annoyance but I had no idea how "deep" it goes.
Keep us posted on the meds situation as well. If it becomes a hurdle we should get some sort of a go-fund me type of affair set up. I was just reading about a bit of a breakthru in the eternal search for the "fountain of youth" in the form of a better understanding the skin's biome layer (the shield of good and bad bugglies that protect/destroy us) and I suspect that it has something to do with your immune system's reaction to it. I don't pretend to know anything about it but if I can find the article will send it your way.
Be well and prayers for you.
Gordy
Immunologist here. The first wave of "Biologics" (i.e. antibodies) are starting to hit the market to treat inflammatory diseases, including psoriasis/eczema. These drugs are incredibly effective, but expensive at the moment. Scientists across the globe are working tirelessly to make these better and cheaper. 100% guarantee these therapies will dramatically improve your condition in the very near future. Hang in there, bud!
@EBK: if there's anything to take from my story, be careful with the meds but do battle the eczema before it takes over.
@Gordy: I'm in the Netherlands. Compared to people in the US, we have 'free' health care...I'm reponsible for the first $800 of my total health care cost in a year, after that the community pays for it. Socialism, it works. So no need for a go fund me.
@DLW: very interesting meeting an expert on this here. The biological I've heard of is called Dupilumab and supposedly it's a bit of a miracle. One injection and you're clean for about 3 weeks or so. Estimated cost a year is $15k to $30k. As long as the creme works, I'm on creme. After that there's normally pills like ciclosporine which wrecks the kidneys. My dermatologist wants to argue the case to the health insurer to skip that in favor of the biological when it becomes necessary.
Right now, the skin is relatively quiet and my mind is pretty clear. Lots of stuff that I didn't get to over the past few months, hopefully I can make a dent in that pile soon.
A few weeks ago there was an article in the news paper of a woman who has a really, really, really severe case. When the wind graces her skin, it already starts to crack. Compared to that my stuff is peanuts (yet already unbearable at times).
Ciclosporin was very effective and completely cleared when I was prescribed it for my severe eczema which like you I have had since childhood. It's only short term though and the downside is you have to be regularly monitored. Blood tests, urine samples. BP checks starting off at two week intervals then increasing to monthly. I was taken off it after a year and now am being prescribed azathioprine. This too has been very effective and is less harmful to the kidneys. I am taking the lowest dose for my weight possible and my eczema is completely under control. Its not completely cured but I don't itch and scratch until bleeding anymore. I still occasional use betnovate if a small patch of eczema flares and I also moisturise regularly.
http://www.bad.org.uk/shared/get-file.ashx?id=71&itemtype=document
I have a little bit of the same thing (not nearly as bad). I have an about softball size patch of skin on my shin that has been terrible, dry, cracked, itchy for the last year or so. I've been prescribed the steroid cream, but that didn't do much for it. I have an appointment in another week or two with a different dermatologist to see what they can do about it.
Oh man, so sorry to hear. All the best to you, you are not alone!
Very sorry to hear you going through this. I have watched my wife deal with the auto-immune disease Crohn's for what is now 30 years roughly. She has a foot of her intestine taken out many years ago. Prednisone is something she is very familiar with. Amazing drug in the short term but not so amazing long term. I mention all this as there was a time when she was on IV treatment every 6 weeks when the Crohn's was active and was on a drug Remicade. We credit that to her remission to where at least it's not active. After 6 years of using it, it created its own issues for as you said these things are designed to knock down the immune system and who in their right mind really wants that in a perfect world.
I'm curious if anyone has ever suggested Remicade and other drugs like it at least in the short term? Just a thought when it gets real bad.
As we all know, all these drugs have side effects but in our case having more intestine removed was worse than the side effects. It's a balancing act to be sure.
At any rate, I do hope you can get a handle on it and keep a handle on it.
Rutger, I'm sorry to hear this but glad to know things are going better. You know you're one of my favorite folks around these parts!
I haven't been on the forum in some time, and this was at the top of the list when I stopped by yesterday. I really do feel for you, having health with psoriatic arthritis for many years now myself. I am fortunate that it is well under control at present—a combination of reasons, I believe, including being on a biologic drug like yours.
Something I have learned is that suffering is a powerful teacher, and you now have access to a whole lot of empathy. Perhaps you will one day be able to support someone in need and turn this bad thing into something good. Anyway, that kind of thing can sound trite when you are in the middle of it. I am sorry you're going through it and I wish you all the best.
I'm luckily on the way back to relatively normal. The eczema is quiet, hope to get the eyes fixed soon. That should help a lot.
Thanks to everyone for commenting, also some people sent me PMs, very much appreciated. If one thing is showing from this thread is how big of a problem this is, not just for me but for a significant portion of other people here. I'm thankful for all the positive support and hope that it has an effect both ways, that me writing about it may help some others.
Glad to hear that things are improving. (It always amazes me, the range of knowledge people on this forum have.)
Update: had cataract surgery on my left eye last week. The left eye was almost blind. It was an amazing experience to have the veil lifted. I see details that I haven't seen in months. I was amazed of what my son actually looks like, that there are separate leafs on trees, tiny wrinkles in skin...that sort of stuff. I haven't tried soldering yet but hope to get to it this weekend. Next eye in 2 months.
Good to hear you're recovering!
Wow I just stumbled across this thread, that's a tough cookie to deal with by any stretch of imagination...
Glad to read things are looking upwards and the veil is lifted on one eye, best of luck for the next operation and for the general well being and recovery in body and mind!
Glad to hear things have improved enough to see again somewhat normally and ready to try soldering again.
One eyed soldering, i've found it easiest to find the solder joint first with the solder then bring in the iron and complete the joint. The tactile feedback of being in contact with joint appears to help in finding the joint with the iron, more consistent success.
dave
Thanks for the tip Dave. The right eye has very blurred and washed out vision but funnily enough it provides enough feedback to still see depth. Yesterday though, I looked at a PCB with my +3.0 reading glasses and was again amazed at all the details I could see but hadn't seen in months. I also looked at the previous soldering attempt before the operation...my oh my that was pretty bad. The thing to now get used to is having to switch out glasses a lot. Because the left eye has only one fixed focus point (about 2.5 meters away), looking at a computer screen requires +1.25 glasses, grading tests is +2.0 glasses and fine detailed work needs +3.0. So when the other eye has had surgery, I'm probably going to get +1.25 glasses with a hint of 2.25 in there and then it should be workable in most every situation. As you may know, I teach physics at the high school level, so I'm constantly doing eye experiments, determining and checking the focal length of the left eye lens. It still shifts around a bit, but is getting close to settling.
Heh, you should get a pair of mad scientist glasses that have additional little lenses on moving arms, that can be placed in front of the fixed, normal lenses :)
(I googled, but could not find out what those are called... all I got was a torrent of shitty, shitty steampunk nonsense...)
Better yet, those glasses should be connected to my scalp with electrodes that read my brain waves so I can control the lenses with my mind.
A multifocal lens implant was an option at additional cost, but supposedly the experience with those is that there's never a truly sharp image and a lot of halos around lights in the dark. So I opted not to go for that.
Wishing you the best mate, that sounds like a hard slog. Its easy to underestimate the effect long term health problems have on your mental state. How slowly it takes effect, so slow sometimes you dont even realise the dark tunnel you have been travelling down. But even if your condition is a lifelong journey, there must be ways to improve your situation. There is always hope of improvement. Hoping things turn around buddy.
Paul
Quote from: chromesphere on May 28, 2019, 05:37:16 AM
Wishing you the best mate, that sounds like a hard slog. Its easy to underestimate the effect long term health problems have on your mental state. How slowly it takes effect, so slow sometimes you dont even realise the dark tunnel you have been travelling down. But even if your condition is a lifelong journey, there must be ways to improve your situation. There is always hope of improvement. Hoping things turn around buddy.
Paul
Thanks Paul, it's much improved right now, don't have to spend a whole lot of time on it. The dark tunnel thing is a good description, glad I'm out of it. Let's hope it's going to be a nice long stretch.