The Nameless Sickness

Hi Everyone, I hope I'm posting this in the correct area.

I've been sick for roughly 2 1/2 years I'm going to appologize in advance as this is going to be an extremely long post. I'm copying a bit from my blog due to my fingers being severely inflamed and sore so I appologize for some of the past/present changes. Also I do maintain a blog @ www.savedieter.com which has pictures that will give you a better idea of what i'm going through.

It started out in mid June 2007 with a cough (which they think was pneumonia), visited the doc tried out a couple of meds over the course of a couple of weeks the cough finally went away and then the joint inflammation/muscle pain started up, started with the right hand, then it spread to the left hand, then pretty much spread throughout the body, so my fingers, hands, wrists, ankles etc are swollen/have been, it’s kind of on a rotating cycle where the swelling will go down for a few days then flare back up.

Continuing on, visited a second doctor who put me on meds for inflammation and for the pain which did absolutely nothing for the inflammation, he thought it would be wise to do a rheumatoid arthritis test which he did, and it came back negative, after another two weeks or so of medication changes with no sign improvement I went in again to see a different doc. This doc put me on diff meds for inflammation and for pain, went from vicodin to percocet since the pain meds become less effective with time, the doctor recommended seeing a rheumatoid specialist, at first I was hesitant thinking my rheumatoid arthritis test came back negative so why am I seeing a rheumatoid specialist but it was explained they are specialists in inflammation which made sense. So after waiting a week I went in and saw the rheumatoid specialist, we got the ball rolling with different meds (went off one steroid and on to another, also went from percocet to morphine), and tests. I saw her through the month of August and September I think a total of 6 times without seeing much in the way of improvement, being that I was self paying for everything since I don't have insurance I was running out of money, so I managed to apply with Washington state Basic Health and get health insurance through Group Health, which is nice to be covered finally, but it doesn't help the fact I owe a few grand from before I was covered.

Fast forward to October 2007, I saw a general practitioner over at group health to get my foot in the door and a referral to their rheumatology dept, which to my surprise only took a week, saw the doc over there and pretty much explained what had happened/treatment over the past months, I was put on some additional meds for the inflammation and told to give it a few days to see if they helped, which they didnt, so the doctor decided he was going to give me a 750mg IV of Prednisone, which is a steroid that I had been on since august but I was taking 30mg a day, so it was a pretty high dosage, went in and had that done, was told to wait 24 hours and I should see results, unfortunately after 24 hours nothing had changed, that was two weeks ago. I went in for another visit with the new rheumatologist and we discussed treatment ideas, the doctor took me off one of the meds, and then put me on percocet again, so Im taking morphine and percocet for the pain now, but its once again loosing its effectiveness being that Ive been on it for so long. Ive had to go in for a cat scan because the doctor heard something with my breathing and the chest x-rays showed something but they werent able to determine what it was, the scan showed something as well, and theyre waiting for me to see a pulmonologist before they continue treating me to make sure certain meds wont interact with the others etc. So thats where Im at as of now, He said its going to take a while to treat, and I pretty much have a note from the doctor saying I wont be able to work for a few months which is always fun.

In November 2007 I went into the pulmonologist and did a few breathing tests and he decided that I should come back the following day for a bronchoscopy. For those that dont know, its a procedure where they stick a fiber optic camera down your nose and into your lungs to check things out and take samples. The procedure is supposed to take about 2 1/2 hours, I went in about 12:45, they got an IV in me and started It around 1:30 or so, I guess people are normally semi-awake during the procedure but since Im on some pretty hardcore pain meds as is, mixed with the sedatives they gave me I was out for the count. I woke up being wheeled into recovery. As I was sitting in recovery I was getting pretty bad breathing pains so they hooked me up to an EKG and said from the readout it looked like I had clots, so as I was sitting in recovery they were trying to organize a chest x-ray and ct scan to check. In nursing the IV I had in my right arm the nurse pulled it out too far and couldnt get another good vein, so I ended up getting stuck in the hand, and getting wheeled down to get a chest X-ray, then I was wheeled over to get a CT Scan, where the tech decided I needed a bigger IV so he stuck me in the left arm so they could push large amounts of dye quickly. After getting wheeled back upstairs we sat around and waited for about 45 minutes and they finally came in and said I didnt have any clotting and released me which was around 6pm. Even after getting cleared I still felt like crap, I was shivering like no other, felt like I was in a freezer that lasted until about 2 or 3 am. The muscle/joint pain I have has been magnified by about 10x since the procedure was done so it definitely took a toll, but no pain no gain.

In November/December I had Cytoxan IV Infusions, Cytoxan is a chemotherapy drug, No I dont have cancer, but they used it in an attempt to break down my immune system to try and get the steroids to work, unfortunately it didn't do any good and it made me really sick for a few days after each infusion. Also in November I had a bronchoscopy where they stick a camera/tube down your throat to flush my lungs with fluid to try and get some samples because on the MRI/CT scans they have seen nodules all over my lungs. The tests didn't yield much but they said they weren't anything I should be worried about. In January I wasn't happy with the Group Health rheumatologist I was seeing so I went in for a second opinion at another Group Health rheumatologist he thought all of the other doctors I had seen were wrong and that the inflammation in my joints was all water retention and that the inflammation wasn't really an arthritic form of inflammation, and that all the pain I am in is mental and not "real". He told us to sit on the information and decide whether we want to go with his course of treatment was stopping all the meds and do physical therapy and he said the swelling would disappear. My family and I didn't really agree with his assessment as it didn't make a whole lot of sense, my original doctor always said that if you look at my blood tests I look fairly healthy but if you look at my body you can tell how bad it is and how much pain I am in. With that said we decided to go back to the rheumatologist I had been seeing since I started at Group Health, I have continued to see him to this point. Both the doctor and I were extremely frustrated at the lack of results which Is why I wanted the second opinion but we both worked out what we wanted to do as far as treatment and everything cooled down per say. The rheumatologist said that had it been merely "water retention" all of the drugs I had been on would have eliminated it and my joints wouldn't be so swollen and literally red hot and I wouldn't be in any where near as much pain. We suggested potentially seeing the doctors at the UW research hospital just to get as many brains on this as possible. At that point my rheumatologist had sent my case to tons of doctors in state and out of state and also to health agencies back east and no one really had any clues.

We received a letter saying that an appointment at the UW would take a while to setup but that Group Health would pay for everything and what not. I received a letter in late January or Early February saying that I would have to wait till April to see doctors at the UW. So being that I would have to wait my doctor did lots of blood tests, X-rays, MRI's and CT scans and had me on various medications trying to get this inflammation under control but nothing really seemed to do much and they couldn't even do much for the pain, I had been on extremely high dosages of Fentanyl (100mg liquid patch) which is the highest they make, 75+ Mg of Oxycodone a day without much avail. I also found out that all of the steroid medications I had been on had caused a fiber necrosis in my hip joints which reduces blood flow to the ball in the hip joint and causes bone loss/damage, so once I recover from all of the stuff Im dealing with I will have to go in to have an operation done on my hip that will relieve pressure and restore blood flow to the joint. The problem is it only works about 50% of the time, when it works it gets you back to 100% but if it doesn't you're pretty much stuck where you left off, so Im really hopeful that once Im able to have that procedure done that it'll work and get me back to 100% again.. Fast forward to April and I saw several doctors from the rheumatology department at the UW including the head of the dept. The first appointment was just going over my file which was well over 150 pages at this point, throwing ideas out there about what it possibly could be and they concluded the appointment saying they would discuss stuff with my doctor at Group Health. The doctor at Group Health again saw the nodules on my lungs and now was a bit concerned and he thought if they got one of these and did a biopsy maybe it would help them figure out what this disease was. So on May 8th I went into Virginia Mason and had an open lung biopsy done. That is where they cut 3 holes in your side and go in with a fiber optics and take a sample. Well the procedure went fairly well, I was in excruciating pain when I came out of it, they pumped me full of a lot of meds trying to make me more comfortable which eventually did their job. I got to have a fun overnight stay in the hospital. They sent my lung biopsy to several pathologists but none of them were able to find much with the sample so unfortunately the surgery wasn't really necessary.

I had a couple more visits at the UW and they had been in talks with my docs at Group Health and by early June everyone decided that they wanted to try an IV medication called Embrel or Humaira, the problem is those medications are over $1,800 dollars a month so the doctors were trying to figure out a way to get the cost of the medication covered. Starting on the 6th of June the docs at the UW gave me a medication called Methotrexate which they said by itself could help but that with Embrel / Humaira it's an extremely effective medication. They just wanted to start me on it and said they would discuss dosage increases with my doctor at Group Health since he is still my primary physician. Unfortunately after about 24-36 hours I started having an extremely bad allergic reaction to the medication.

After the reaction I obviously stopped the Methotrexate and because of the severe skin irritation/reaction on my arms, hands, face, scalp, and chest/back I had to go into the dermatologists at the UW and at Group Health. I had a couple of skin punctures done as you can see in the picture of my right arm where the two sets of stitches are. The tests they did on those samples didn't really seem to show much and all I could do is apply a lot of various types of steroid creams and gel's and a nifty sauna suit trying to fight back the skin rash. Unfortunately the creams/gels really didn't seem to do much, it's been more than a month and a half and I still have bad skin on my hands, arms, back/chest face and scalp, so pretty much all the places I had it before it's just not as severe as it was, been through lots and lots of topical cream without much relief. Back to the Humaira and Embrel, we were never able to get any assistance with the UW or Group Health cost wise so the doctors suggested a third medication called Remicade, they said It would work the same but only be about $140 dollars per infusion, which I would need a max of two per month. They also said that the Remicade could really help with my skin. I had the first infusion in June, waited two weeks and they said I should start noticing the effects within a couple weeks of the first infusion. Hadn't noticed anything good but had been getting really sick and physically exhausted, I was able to sleep for 16-18 hours and still was dead tired and there was nothing I could do. The second infusion was a larger dose and it's been nearly a month since I received that and I have not noticed any positive effects from it, inflammation is still there 100% and my skin is still horrible. Still had the horrible side effects from the medication and the doctor said there wasn't much we could do about them.. I got the bill for the first infusion, it was supposed to be $140.. bill was for nearly $2,900.. Still haven't gotten a bill for the second. Since I was not feeling better we went back into Group Health and discussed everything with the doc and he was amazed at the cost of the bill but said there isn't much he can do about it, gave me the wrong info owell on their part.. Even though I haven't felt any better the doc wants me to try one more infusion tomorrow to see if it does anything before we stop the Remicade. So right now Im on 12 medications managed to get off the steroids because they weren't helping and they were doing more harm than good. On about 120mg of Oxycodone, 150mg of Methadone and various other meds that are sure taking their toll on my liver. So it'll be a few weeks before we see any results if there are going to be any, I'm just hopeful something will start working so I can get back to living a normal life again since its now been over a year since I first started getting sick.

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 Im on. Within a few weeks of starting the Humira my joint swelling went down a bit but reached a point at which it didnt improve at all and has remained at that point since and theyre still extremely painful. The skin pretty much stayed put and even with a high dosage of Humira and Cyclosporin hasnt improved at all, I would actually say its 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 couldnt quite figure out why it was happening and it was odd that It was only happening once a week, theyre now suspecting that it could be a reaction to the Humira So Ive taken one last injection and were waiting to see if those symptoms reappear, if they do well 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 Im 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 were hoping they may be a bit more active in terms of surgeries, but Im 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 thats pretty much where Im at as of now, Im still on butt loads of medications as well as methadone and what not, unfortunately its still not doing much of anything for the pain so Ive been taking myself off of it slowly but surely the doctor is trying to come up with something new for pain management so well see what happens.

I was approved to see the doctors down in Oregon at OHSU (Oregon Health and Science University). 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 thats $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 Im 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 Ill 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 Im looking forward to at all but theres 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 were 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 hes 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 wasnt 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 didnt think I would be able to recover to that point. That really hit me hard because thats like saying youre never going to be able to do what you truly enjoy and love again. Im really hoping that she was wrong about that and with any luck I can regain all that I have lost. Well see what happens though. I have an appointment next week to return to OHSU to see the dermatologist again. Im looking forward to seeing him so hopefully he can recommend doing something else to help the skin and scale issue as its extremely uncomfortable 24/7 the constant itching is driving me up the wall. What Im not looking forward to is the long drive down and back in one day. Its a fairly boring adventure. Thats about all for now; Ill post another update when I get back from Portland to see what he has to say. Also Ive been trying to seriously inquire about seeing a more active orthopedic team, as recently Ive 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.

As of October 21st 2009 I started a new medication called GOLIMUMAB which took a bit of effort to get but they are hopeful that it will help with the inflammation. The thing that has me worried is the fact it's in the same family as Humira and since Humira didnt seem to help too much im a bit skeptical that this new medication will do much, but I guess I have to remain positive.