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Well it’s been a couple of months since I last updated my blog. Quite a bit has happened since my last update. I was finally approved to see the doctors down in Oregon at OHSU. The first appointment was with the Dermatologist only, he spent a good hour or so with me and they took a couple of skin biopsies, and he seemed fairly certain what I had was a form of pustular psoriasis. We discussed a couple of medications that he thought would be helpful in clearing up my skin and also possibly helping with some of the joint inflammation. The medication is called Soriatane and as usual its one of those that’s $900 a month. He mentioned that they have a very knowledgeable doctor who specializes in psoriatic arthritis. He wanted me to see him as soon as possible. We drove back from Portland that same day and spoke with the doctor at Group Health and they began working on getting me an authorization to see the other doctor down in Portland. About a week later we received the results from the skin biopsies and they confirmed that what I have is indeed pustular psoriasis. My doctor at Group Health worked very hard in order for me to get the Soriatane at no cost, it took quite a bit of leg work but in the end we were able to get it. For the first week or so it seemed to really help reduce the scale on my entire body. Unfortunately after another week or so it seems to have completely stopped working and the scale has fully returned and the only way I’m able to reduce the scale is if I cover my entire body in Vaseline which is not very comfortable at all. We went in to see my doctor at Group Health again and notified him that we had an appointment to see the arthritis specialist at OHSU in roughly mid-October. He said he wanted me to see him sooner than that as we are wasting time. After a couple of days we were then notified that we had an appointment the following week which was great. I was notified that I will be losing my Group Health coverage come December because I have been sick and on the Basic Health program for 2 years now. After 2 years they make you switch over to Medicare. The switch has me worried as it seems as if I’ll be losing quite a bit of the care that I have received from Group Health and it seems that the costs will greatly increase. So the switch is not something I’m looking forward to at all but there’s not much that I can do about it. We drove down to Portland, leaving Seattle at roughly 9am and arriving in Portland around 12-1 to see the arthritis specialist. He spent a good hour or so going over all of my history and examining me. He seemed pretty sure as to what I have and we discussed a couple of medications that he would like me to try as he thinks that they will greatly help my condition. Naturally said medications are the ones that cost over $1,500 a month so again we’re going to have to apply through Group Health to see if I can get them at no cost. It was nice to hear the doctor say he’s pretty sure I have Psoriatic Arthritis as none of the other doctors have said with much certainty to what I am plagued with. During the examination he pointed out several of the areas where I have severe muscle degration due to the lack of movement and exercise and he recommended seeing a physical therapist to prevent any further loss of motion and to start recovering.

 I was able to see a physical therapist this week and unfortunately the news wasn’t what I was hoping to hear. She thought that the damage I have in my hands is mostly irreversible which really bummed me out as I explained my ultimate goal is to be able to ride motorcycles again and live a somewhat active life to the best of my ability. She didn’t think I would be able to recover to that point. That really hit me hard because that’s like saying you’re never going to be able to do what you truly enjoy and love again. I’m really hoping that she was wrong about that and with any luck I can regain all that I have lost. We’ll see what happens though. I have an appointment next week to return to OHSU to see the dermatologist again. I’m looking forward to seeing him so hopefully he can recommend doing something else to help the skin and scale issue as it’s extremely uncomfortable 24/7 the constant itching is driving me up the wall. What I’m not looking forward to is the long drive down and back in one day. It’s a fairly boring adventure. That’s about all for now; I’ll post another update when I get back from Portland to see what he has to say. Also I’ve been trying to seriously inquire about seeing a more active orthopedic team, as recently I’ve read about the core decompression which I need on my hips due to the aseptic necrosis that has begun to kill the bone which was caused by the steroids they had me on to combat the inflammation. I would really like to have the operation before I lose my Group Health coverage as I think that they should pay for it since they are the ones that have had me on the steroids while knowing that they are destroying my hips at the same time. So we’ll see what happens.

Since my last update a few things have changed. Some of the changes are good, others are not so good. We’ll start with the good, after being bugged by this damn psoriasis for over a year it finally seems to be getting under control with the help of light therapy and ointments, although I’m not really sure if the light therapy is really doing that much it could be the ointment helping the dead skin clear which is giving the illusion of improvement. I’m going to give it a few more weeks and we’ll see what happens, I’m trying to stay positive but we’ve tried so much in the past I’m almost hesitant to believe that beaming me with light rays is the simple solution to this complicated skin issue. The process itself is kind of a pain in the butt. Essentially I have to lather my entire body in Vaseline then I get to go into the ‘Light Booth’ which is essentially a vertical tanning bed, I get hit with rays for about 10 seconds and then I’m done! We were initially hesitant to do the light therapy because of the distance to the central office. Luckily Group Health contacted a dermatologist out here in Edmonds and they arranged for me to visit their office which is great because I have to do these sessions 4 times a week. The dermatologist out here also decided to waive the co-payment fee which is really helpful @ 15 dollars per visit 4 times a week would have been a tad expensive, but they were nice enough to waive that. Onto the joints, I began taking the Humira weekly which they were hoping would help with the joints and the skin, well the skin has gotten better but we cant be too sure if that’s from the increased Humira or the light therapy and what not, but my joints have been pretty much staying the same if not getting a bit worse. They’re always hurting badly but sometimes it gets to the point where I’m simply not able to move and have to stay immobile. The doctors have started me on steroids yet again, they seem to be taking a little bit of the edge off and make the pain and inflammation a little more manageable. I still don’t like taking them knowing that they are essentially ruining my hip joints and what not. I’ve been pressing the doctor a lot recently about being seen at the National Health Institute or the Mayo Clinic or possibly Johns Hopkins but nothing has really come of it as of yet, I’m keeping my fingers crossed though. That’s about it as far as updates, I do have a few pictures.

 Here’s are the shots before

Here’s an after shot.

Well since it has been a few months since my last update I figured I would let everyone know how I’m doing. In November I started a self injectable medication called Humira which is supposed to help with the severe arthritis and psosaris along with the other medications that I’m on. Within a few weeks of starting the Humira my joint swelling went down a bit but reached a point at which it didn’t improve at all and has remained at that point since and they’re still extremely painful. The skin pretty much stayed put and even with a high dosage of Humira and Cyclosporin hasn’t improved at all, I would actually say it’s gotten a bit worse. From mid December through the first part of February once I was getting severe migraines and I was physically Ill, I would have to go into the ER and they would have to hook me up to an IV and pump me full of meds and within a couple hours I was as good as new. The doctors couldn’t quite figure out why it was happening and it was odd that It was only happening once a week, they’re now suspecting that it could be a reaction to the Humira So I’ve taken one last injection and we’re waiting to see if those symptoms reappear, if they do we’ll obviously have to stop and try to find a new medication to use. In the last 3-4 months my hip pain has also gotten quite a bit worse, the Avascular Necrosis (Hip Pain) is from the steroid medication I was taking when I first got sick. I managed to get in for an appointment with the orthopedic surgeon at Group Health and he said that we can go ahead and do the core decompression which has a 50% success rate, in that procedure they drill a hole into the head of the femur to relieve pressure and to restart blood flow at which point new bone will grow in. The other option I have is to do nothing and a few years down the road have a full hip replacement. They say I’m too young for a full replacement right now and if I got one they would more than likely have to go in and replace it once or twice during my life as they are not really meant for overly active people. The Orthopedic surgeon said the last time he did a core decompression was roughly about 5 years ago, that worried me a bit, so I asked for a second opinion and we’re waiting to get into the orthopedic department at the UW as we’re hoping they may be a bit more active in terms of surgeries, but I’m stuck waiting several months before I can get in there. The most recent event I should say that has happened is I had air leaking into my chest between my lungs which was making it difficult and painful to breathe. I went into the ER and they did barium x-rays as well as CT scans and they were able to see the pocket of air but deemed that it was not severe enough to have to place a chest tube in to ‘drain it’. So that’s pretty much where I’m at as of now, I’m still on butt loads of medications as well as methadone and what not, unfortunately it’s still not doing much of anything for the pain so I’ve been taking myself off of it slowly but surely the doctor is trying to come up with something new for pain management so we’ll see what happens.

Well in the last few months a few things have happened. Firstly I started a new injectable medication called Humira, It along with a medication called cyclosporine has helped my skin calm down quite a bit, but I still have severe psoriasis, the Humira has also taken down some swelling in my joints but it only took it down to a certain point and they haven’t been getting better from there, the severe muscle pain that I have been experiencing has also gone down considerably, My hips have been bugging me a bit recently so I do have an appointment to go see the orthopedic surgeon in early February so we’ll see what he says about them but we know that there’s going to have to be surgery on one or both of my hips.  While there is marked improvement in my overall condition there is still a long long way to go before I’m actually ‘better’.  Below is a picture just to show how many medications I have gone through

Well October was an extremely painful and miserable month for me. The pain I’m having when just trying to move is unbearable. I cannot begin how to describe how painful it is just to stand up even with my chair at the highest setting it feels like I’m trying to stand up with an elephant on my back the other problem is the fact all of my back and leg muscles are sore so merely sitting down is also quite painful. As I said it’s just pretty miserable all around. The skin started to get a little better but its getting bad again, there’s alot of fluctuation. We’ve spent a good portion of this month trying to get me hooked up with a free supply of Humira they seem to need to review me case repeatedly before giving me a yes or no answer. Anyways thats all I can really say at this point in time as more info comes about i’ll post it.

Well here are a few pics that were taken today. I have an appointment to see my rheumatologist tomorrow.

Here are a couple of new pics of my hands. The rash on my hands has spread to my upper arms,  back, chest, and the front and back of my legs, I started a new medication last week but have yet to see any positive results from it.

Well I’m scheduled to go in for the third infusion tomorrow.. I have yet to notice any positive results from the Remicade so I’m a bit skeptical, but we’ll see what happens. It’s going to take several weeks before I notice any results so it’s a waiting game. I thought I would throw up a picture or two. Here is a collection of prescription bottles that I’ve been saving just so people realize how much medication I have gone through during my ordeal, that’s only about 3/4 of them.. Also included is donut kitty, the cat just happened to be in the right spot at the right time so I couldn’t resist taking a picture of it.

Well It’s been more than a month since my first Remicade infusion and I have not noticed any positive results from it. The redness from the allergic reaction I had back in early June has gone down quite a bit but I think that’s just from the time that has passed since I took the initial dose of the Methotrexate. We received a bill for the first Remicade infusion, keep in mind we chose this medicine because it was supposed to be considerably less than the Embrel/Humaira. Those two medications were roughly $1,800 a month and the Remicade was supposed to be $140 dollars per infusion, the bill for the first infusion was nearly $2,900 dollars, and keep in mind I’ve had two infusions done thus far. We went into the doctor today and I explained all of the negative side effects from the Remicade, the total physical exhaustion, feeling sick etc and I explained I really didn’t want to endure another infusion since I have yet to see any positive results from it. The rheumatologist suggested that we try one more infusion at a smaller dose. That has yet to be scheduled so we’ll see what happens.

During this visit to the UW we reviewed all of the symptoms that came about after the methotrexate. The doctor reviewed all of the pictures I took during the peak of the reaction. We discussed where and what we wanted to do from there. The doctor left the room for a few minutes and returned shortly with the head of rheumatology and several other doctors. We talked about Humira briefly and trying to figure out how we could get it going so I’m not stuck paying several hundred dollars a month for the drug.  They offered to write letters on my behalf in an attempt to show that I have a genuine need for this medication and that nothing else will work. The appointment pretty much ended on that note, although when I returned home I received a call from Group Health stating they wanted to try a Remicade infusion which is a drug that has been out for quite a while and it’s dramatically cheaper than Humira or any of the other drugs they wanted to try. It has some serious side effects one of them being cancer, while it’s extremely rare it can still happen, but that’s a risk I am going to have to take if I want to get better. So I’m slated to go in for the infusion it’s supposed to take about 4 hours for the first one, then I’ll get one in two weeks, and then  6 weeks, each one will take less time and be a higher dose. So I’m really hopeful I don’t have an allergic reaction to this drug and that it helps me recover, they say some people notice the effects immediately others it takes a few infusions before they start feeling better so I’m really hopeful.. So that’s where we’re at right now..