I was diagnosed with psoriasis back in 1994 when I was 26 years old. I had an “itchy spot” that started on the back of my scalp, and didn’t go away. I remember asking my girlfriend of the time to have a look at it. She was very obliging and parted my hair. However the look of disgust on her face and “ewwww” that came from her mouth as she rapidly backed away from my “horrible lesion” has etched itself clearly into my memory. It was my first experience of someone struggling to hide their disgust at what psoriasis looks like, and little did I know it was something I would see (and loath) for many years to come.
I went to see the local GP (or family doctor as some people say), who quickly made the diagnosis of psoriasis, and asked me if anyone else in my family had it. “Not that I know of” I replied. He prescribed me a large bottle of lotion and told me to apply it on the itchy spot whenever it got itchy. Although I didn’t know it at the time, I had just been diagnosed with a chronic disease which would be with me for life.
That first bottle of lotion lasted me a couple of years. It made the itching disappear, although it was never permanent. After a year or two I developed an “itchy” spot on my elbow that also wouldn’t go away. At the time I was working in Hong Kong and my local doctor prescribed me some steroidal cream. I think it was dermovate – or perhaps he started me on something not so strong. More lesions began appearing, and whereas they initially disappeared for a while when I first applied the cream, they soon never fully disappeared, and in fact began to grow larger.
At some point around the year 2000 I researched some more into this “psoriasis” and found out a bit more about it. I saw that there appears to be a genetic link, and as far as I knew no-one in my family had psoriasis, and I raised it with my brother the next time I saw him. “Oh yeah!” he said, “Granddad had it so bad he was known as ‘the snowman’”. I wasn’t able to recall my grandfather having the same lesions that now appeared on my body, and unfortunately he had passed away a couple of years back so I wasn’t able to check. Anyway, it seemed I had found my genetic link to psoriasis. Since then I’ve found out that my younger brother also suffers from some rashes on his elbows and scalp, and my elder brother is psoriasis free. Interestingly, my father and his brothers (all on the same side of the family as my grandfather with psoriasis) all don’t have any psoriasis. Perhaps it skips generations?
So here I was in Hong Kong, living with psoriasis. Fortunately in Hong Kong (and many parts of Asia) dermovate can be purchased OTC so I didn’t have to waste money on doctor’s bills just to get a prescription. It started to get embarrassing for me when I went swimming. I had lesions on my back and people would fall quiet when I walked past. I found out that everyone thinks the worst, i.e. that the rash is some horribly infectious thing that is super aggressive and just waiting to leap off my body and jump a gap of several feet to infect them, which they believe would make them writhe in agony as skin sloughs off their body (accompanied by an evil laugh sounding in the background). If I was out with friends who had never seen my psoriasis, before I took my shirt off I had to explain that I had some “funny skin patches” there, and that “no, it isn’t AIDS or some infectious venereal disease” (why is it that those two always jump to the top of people’s list when they see a skin rash)? Boy it was embarrassing – so much so that I typically just didn’t take my shirt off.
As the psoriasis began to develop in more places I began to try more “non steroidal” approaches to control it. Including washing my hair with thick smelly tar, and trying to get out in the sun more. At some point I noticed some pitting happening on my fingernails and toenails. The only time I had ever seen this before was with fungal infections – so I naturally presumed that this was the cause. I bought some anti-fungal medications OTC (I’m in Asia remember) and dosed myself. However after about 8 weeks of medication there was no improvement. I was now certain that it could not be a fungal infection and did some more research. I quickly established that this was related to my psoriasis and that there wasn’t anything I could do about it. Bummer. I could hide skin lesions under my clothes, but it was way more difficult to hide ugly fingernails.
I have always been a gym monkey. It is my preferred method of staying healthy. Sometime in late 2000, early 2001 (I was 32 years old), I started getting pains in my foot. I was doing some kickboxing with a trainer at the time, so automatically blamed that. I took some time off from training (I hated being inactive though), but the pain didn’t go away – although NSAIDs did make it forgettable. Over the next couple of years I was incredibly busy with my work, and my son had just been born (I was married by then), so basically I put up with the pain. Whenever I went to see a doctor about it they blamed it on exercise and prescribed the same thing – rest and painkillers.
In Asia cheap affordable massages are easily obtainable and I love getting them – especially as they would help to sooth the pain in my feet. I worked very hard to keep the same masseuse though – as it was always a chore to have to explain to a new masseuse that the strange rashes on my knees, ankles and arms were harmless, and that my fingernails were ok too!
The foot pain started to get worse – especially in my heels. I went to see the orthotics specialist who promptly diagnosed very high arches in my foot, and prescribed special shoe inserts. They didn’t help diminish the pain though. I went to see a special physical medicine specialist who (like all the other doctors) diagnosed the pain as a chronic sports injury that hadn’t healed properly. Apparently there is some type of heal injury that sports people sometimes get – which my doctor believed I had. She therefore gave me a new radical treatment that had been just approved for this injury. She injected the nerves in my foot (in three places) which totally numbed my foot, and then applied what I can only describe as a small vibrating hammer to my heel, for about 25 minutes. Apparently this type of trauma would spur my body into healing the chronic injury. Naturally it didn’t work because it wasn’t a sports injury! I stayed on the NSAIDs, which I interspersed with paracetamol.
During this time I woke up one day with an extremely sore back – so sore that it was difficult to walk. The doctor believed that I had sprained some muscles in my back due to a changed gait due to my sore feet. I was prescribed tramadol and bed rest for 3 days.
In 2003 I got a new job in another part of Asia. My psoriasis lesions continued to grow. The pains in my body also continued to increase and I frequently suffered from pain in my ribs – to the point that it kept me awake at night unless I took some painkillers. I wasn’t going to the gym anymore and my weight ballooned up. I wasn’t too happy at that stage of my life!
Then 2004 arrived – it was to be the year that changed everything. I changed jobs again, and ended up working in a hospital with doctors from the US, Australia, Canada etc. My pains continued – and in fact were getting worse. One day I woke up and the pain was in my right hip. It felt like someone had put a bag of broken glass in there. I went to see the doctor and again they attributed it to a gym injury (I had been doing some cycling to try and keep in shape). “You’re not 21 anymore – you need to take it easy at the Gym” said the doctor. The problem was what could he give me for the pain? I was already taking ibuprofen, so he prescribed me some indomethacin instead, warning me that it was a top shelf NSAID. I went home, took the medication, and went to bed (I hadn’t been sleeping well due to the joint pains). I slept for about 2 hours and then abruptly woke up with the worst headache I’d ever had. It was unbearable. I went to the hospital’s ER for some treatment. For the first time in my life I had IV morphine. Wow. In like about 5 seconds the pain level went from 9-10 (being the worst ever) to a 3. I couldn’t believe how well it worked. While I was lying (and probably drooling a little) in my little bubble of reduced pain, the doctor came over to me and asked about why I had taken the indomethacin (since that is what they deduced had given me the headache from hell). I talked about my aches and pains, and he looked over my chart and said “you have psoriasis right?”, I agreed and he went on “I think you may have arthritis”.
Arthritis? Isn’t that the disease that old people get? I thought to myself. How could I have arthritis, I’m only 36? Yeah. I was the naïve one. The ER doc called the rheumatologist. He came in and had a look at my medical record, and then pulled out a dictionary. He came over to me and showed me the entry for “psoriatic arthritis”, it had a picture of me there. No – it didn’t really, but he did tell me that I was the classic textbook case for psoriatic arthritis, i.e. getting psoriasis in my twenties and then about 5-10 years later developing psoriatic arthritis.
So now that I knew what was causing all the pain, things should get better right? Unfortunately that didn’t happen, because although the good news was I knew what I had, the bad news was that like psoriasis, they didn’t have a cure. In fact, the rheumatologist told me that I’d have to start on methotrexate, which really had me worried. The only people I knew who took methotrexate were cancer patients. To me it was a really serious medication – and I was extremely worried about side effects. I didn’t feel any better after the doctor told me that since methotrexate is pretty toxic they’d have to closely monitor my liver, and that I shouldn’t drink any alcohol while on it! I had all sorts of visions of dying early.
Anyway, I was discharged on methotrexate and a bunch of pain medications. Now that they knew it was arthritis they didn’t worry about prescribing me top-shelf pain killers such as Percocet. They also CT’d my hips to see how much damage had been done, and establish a baseline.
So I continued on methotrexate for about 6 months. I’d like to say that during that time my arthritis and psoriasis got a whole lot better, but it didn’t. My doctor required that I keep a pain register, recording whenever I had pain, where it was located, the intensity (on a scale of 1 to 10), and whether I took anything for it. Looking back at the register now has me cringing as it reminds me of how difficult my life was then. I recorded pain in 14 places, with 13 of those being consistent (i.e. occurring each day). I got pain in my chest/ribs, lower back, back of my neck, collar bones, left & right feet under the toes, left & right ankles, 2 fingers on my right hand, my right knuckle, both hips, and my jaw. I was surprised at how much my jaw would ache!
After the 6 months my wife and I decided that we wanted another child. However I didn’t realize (and they didn’t tell me before I started) that I couldn’t have children while on methotrexate. So I had to stop it for a couple of months to get it out of my system. Now although my skin did not noticeably get better while I was taking methotrexate – it definitely got worse once I stopped. I guess I suffered from a rebound effect.
The joint pain continued to be bad, and I’m sure that stopping the methotrexate didn’t help. I remember waking up one night and being in so much pain it had woken me up. Now usually if one wakes up in pain then you can adjust your position until you find something that reduces the pain and makes you more comfortable. No position got rid of the pain; lying, standing, leaning against the wall, nothing. I remember being reduced to tears and my wife feeling terrible that she couldn’t help. Finally my meds would kick in and I’d be able to hobble around.
I remember that I couldn’t run to play with my kids, and just feeling so sad and frustrated that I was hobbling like an old man, and I was only in my early thirties. I was taking Celebrex twice a day and supplementing it with narcotic pain medications as needed. Typically I would start with Tramadol first, and if that didn’t work then I’d move on to the stronger Percocet. To give you an idea of how painful arthritis can be, I was never ever pain free – even when taking high doses of Percocet. I’ve said it before and I’ll say it again – arthritis sucks.
Our family typically takes a couple of weeks holiday over the Christmas / New Year period, where we return to Thailand (my wife’s home country). It is wonderful spending this time in the sun, by the beach! So in December 2004 we had decided to spend it in Phuket (where we had some friends). We rented a room in a small two story hotel right on the beach front in Kamala Bay. I went to see my doctor before I left, and stocked up on all my meds, including Percocet and Celebrex.
Well, to cut a long story short, we were caught in the tsunami and extremely lucky to escape with our lives. People around us died that day. We lost all of our luggage – including all my medications – however I don’t look back with regret since I know that we were so lucky to have survived.
Anyway, I ended up stuck in Thailand with absolutely no NSAIDs or pain-killers. Fortunately I could buy Celebrex and even Tramadol OTC, however there was no Percocet or equivalent available. My arthritis quickly became too painful to cope with, and I ended up going to a hospital in Bangkok, to see the rheumatologist. It ended up being one of the best things to happen to me. My rheumatologist was all up-to-date on the latest biologics and asked me if I had health insurance or not. I replied in the affirmative, and he suggested that when I get back to my job that I ask my regular doctor to put me on a biologic. He wrote a letter for me to give to my doctor on return. I asked what he could do for my immediate situation because I was in a lot of pain. He said that he’d give me a one week supply of steroids (Prednisone), tapering off over the week. Now I had never had steroids to treat my arthritis before, so I felt extremely vulnerable leaving the hospital without any pain killers. I pestered the doctor so much about this that he finally prescribed me some slow release morphine tablets too. He was pretty adamant that I wouldn’t need to use them though.
I went back to the hotel and that night had my first prednisone dose. Wow. I woke up the next morning absolutely pain free. I couldn’t believe it. I hadn’t been pain free in years! I felt like… like…. like normal! I was astonished at how good it felt. The doctor was right – that week I was on steroids I didn’t need the morphine.
However after one week I was back at my job, and went to see my doctor. I gave her the letter from the rheumatologist, and she contacted the pharmacy to see what biologic they could get. They replied that they could get Enbrel, so she wrote an application letter to my health insurer to confirm that they would cover the cost (it was about USD$250 per dose, and I’d need two doses per week!).
By now I was off the steroids, and I suffered a rebound of both psoriasis and arthritis – both coming back stronger than before. Bummer. So while I waited for the reply from the insurer I continued to take my pain meds, and I visited the dermatologist daily (I was fortunate to be working in a hospital), where the nurse would apply the dermatologist’s own designed skin cream to all my lesions. I had a lot on my lower back and butt. It didn’t help much, but was better than nothing I guess.
Finally I got the approval from the insurance company, and I was able to get my first dose of Enbrel. I didn’t have the same instant result that I saw with Prednisone, however by the end of one week I was markedly better. Then after one month I was pain free! I remember being delighted at my regular visits to my doctor, to report that I hadn’t needed to take any analgesics for pain, and also that my doctor seemed to be genuinely happy for me too. So I started my journey on biologics.
Interestingly, once I was off the regular pain medications I began to suffer quite badly from restless legs at night. At first I didn’t know that it was an actual medical condition. I would toss and turn at night having terrible feelings in my legs that wouldn’t go away. I had had the same feelings only a couple of times in the past, usually on an overnight long haul flight when I would be stuck in economy class for hours. Taking some paracetamol would help, but now it didn’t seem to be enough. I was having real trouble sleeping – and it was very frustrating. Finally I looked up my symptoms online and found a link to restless leg syndrome. I checked off the symptoms. The next time I was talking with my mother I mentioned the problems I had with sleeping, and that I thought I had restless leg syndrome, “oh, your grandmother has that too” she said, “she has it really bad”. Ahhh – so another gift through my genes!
I went and discussed the issue with my doctor. She prescribed tramadol, as obviously that had been helping to treat the restless legs when I was suffering pain from arthritis. I was however a little concerned about being on tramadol long term – and had some fear of becoming addicted. She did some research and found that pramipexole (Mirapex) had been approved by the US FDA for RLS. She prescribed me some and gave it to me to trial. Usually I had great trouble getting to sleep with RLS. However with the pramipexole I had no trouble at all. It was perfect for me to get to sleep. However it created a new problem. I would invariably wake up after 2-3 hours of sleep with absolutely terrible RLS. Probably the worst RLS I ever had. So ended up taking tramadol to cope. I tried pramipexole for more than 2 weeks (increasing the dose to see if it would help), but it didn’t work. Finally I went back to just tramadol. So up to this day I’m still taking tramadol – usually every night – and I don’t have trouble with my restless legs unless I’ve been drinking too much alcohol (especially wine) or too much exercise. Both these things are indicated as risk factors for increasing RLS in the literature.
I was on Enbrel for approximately 4 years, when I changed country (to Thailand) and job again. During my time on Enbrel although I had no arthritis, I still had some skin lesions (psoriasis). It would never completely clear, and I had psoriasis on my elbows, my scalp, and in my ears. I also still had some pitting in my fingernails. However as long as I didn’t have arthritis I was happy.
When I started my new job in Thailand, I managed to see a Rheumatologist regularly (whereas previously my doctor was only an Internal Medicine specialist). The Rheumatologist convinced me to switch from Enbrel to Remicade. I was a little worried, however it turned out to be a good choice. It was much more convenient for me to only have to have an infusion once every 12 weeks or so instead of an injection twice a week, and I found that the Remicade actually cleared up all my psoriasis too!
I have now been on Remicade for just about 3 years and it is still keeping me arthritis free, although for the last couple of cycles I have had some swelling and pain in one of the finger joints in my right hand in the last week or so before my infusion. Also, in the last 6 months I have developed psoriasis on my scalp that does not fully go away when I have my Remicade, and also a lesion on my left elbow.
I’m thankful that we have great scientists who developed biologics, and that I have a job which pays for my Remicade medication.