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Well here’s a picture update I am having a really bad flare up and as you can see in the pictures you’re about to see it’s really bad and it hurts beyond explanation.

Well Folks it’s been a while since I updated the blog, since October quite a bit has happened in my life. In January the National Institute of Health had me come out, the NIH is the huge government run research hospital. It was a huge step in the progress of me getting better. They stopped the joint drug I was on (Simponi) and they put me on a new experimental drug which it’s primary use is for psoriasis and it has been known to help the joints. Unfortunately it greatly helped my skin but did nothing for my joints. The fingers on my right hand which were fairly normal have now begun to deform and all my fingers in general are in quite a bit of pain along with the other joints in my body, toes, feet, knees, ankles and hips along with the muscles from my lower legs up my entire back. They are now thinking of giving me injections of Stellera which is the experimental drug that I’m on along with the Simponi but they’re going to have to take it to the ethics committee because it’s not considered ethical to put someone on 2 biological medications at one time because it will suppress my immune system severely so I’ll be very susceptible to all forms of germs and illnesses so I’m waiting to hear back from them on what they’re planning on doing.

After searching for a pain doctor for 9 months and not finding one I decided to go back to my original Rheumatologist, They initially made an appointment for me to see a pain specialist in December of 2010 but when I went to that appointment the Dr. wasn’t even a pain specialist and said “I don’t know why the hell they sent you to me” next they scheduled me for one in February and sure enough I get in and talk to him and he said he cant take me on as a patient or give me any advice because I’m not in his “network”. I finally made it to an independent one in Late April and all I can say is what an effin jerk he doubted my pain entirely and stated “There is no pain associated with arthritis or anything you have” Excuse me? No pain with arthritis? What school did you get your Degree from, after arguing with him about it I just left. So in the end I decided to go back to my original Rheumatologist because he knows me the best and did a fair job of helping me control my pain I’m supposed to be flying back to the NIH sometime in July so hopefully I’ll hear some good news while I’m back there. I’ll work on keeping this updated more frequently.

Well, I got back from Germany and within two days I had a gnarly bone infection on my middle finger on my left hand. I had to get a PICC line which is a perm IV that starts in the arm and goes up into the chest. It wasn’t an enjoyable experience what so ever. I have to infuse high dose antibiotics 3x a day for the next 6-8 weeks and hopefully by then the bone infection will be gone. Overall I’m feeling so-so. My joints in my hands and feet hurt really really badly, but my doctor really doesn’t seem to care, we’ve talked about pain meds several times and he essentially said “there’s nothing else we can do” which I think is complete and utter bullshit. If I were someone famous, let’s hypothetically say Bill Gates, you wouldn’t tell me “well there’s nothing more we can do for your pain”. I’m requesting to see an outside pain management specialist to see if maybe they can help manage my pain as my doctor doesn’t seem to know how to and is unwilling to despite the fact I’m in constant misery. I have 2 appointments down at OHSU in Portland on Monday so I’m interested to see what they actually yield if anything at all. I’ll post another update when I get back from those appointments, in the meantime I posted a couple of pictures of my infusion supplies below.

Well it’s been a few months since I last updated this blog. Quite a bit has happened unfortunately nothing too terribly good. I started a new medication called Golimumab or better known as Simponi. It’s a once monthly injectible medication. I started feeling quite a bit better within the first month or so of taking it been then the effects seemed to wear off and I wasn’t getting much of relief from it. As the time has gone on I’ve had several bad flare ups, bad to the point of not being able to move and forced to sit on pillows, and even then the pain was horrible. The doctors have given a name to what I have but I think that’s more so they don’t look stupid at not being able to know what I really have, an ego sort of thing I guess. They say that the joint inflammation is a psoriatic arthritis and that the skin issue is a pustular psoriasis. Last night I took a couple of tumbles and managed to get a concussion in the process. I have absolutely no memory of either of the falls or going to or from the hospital. They did blood work and they also did a CT scan to make sure I wasn’t bleeding from the brain or that I didn’t have any serious injuries other than a concussion and a big lump on the head.

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.