Update

I can't believe it's been this long since I last updated this blog, but here I am again. Last time I talked about my experience with Rituxan, and a lot has happened since then. The results were positive with that drug, at least as it concerns to the Dermatomyositis. But as luck would have it, the Pulmonary Fibrosis wouldn't cave so easily.

Due to the positive numbers in the blood markers after taking the Rituxan, my doctor thought it OK to start tapering the Prednisone. After a few months, I was finally off the devilish drug, and I couldn't be happier. But then it started happening. Within a year, I was in very bad shape, breathing-wise. Eventually it got so bad that I had go into supplementary oxygen, you know, walk around dragging an oxygen tank. This was a huge psychological blow, and I went into depression, especially when the pulmonologist started talking about lung transplant... Time kept passing, things kept getting worse. Eventually, my doctor got me one of those portable units, the one with the small tank that you can strap to your back, which made things a bit better. Still, pulmonary function kept declining, and in fact, on my last check, they said I might not be able to use the portable unit anymore if my condition kept deteriorating, since I would need a larger flow rate.

It finally got to the point where pulmonary specialist said I'd have to go back to Prednisone, since it seems the only thing the fibrosis, responds to. So, despite all my hesitation, I am on Prednisone again. And yes, it did make things better. Despite everything, the damn drug does work like magic. I can breathe again. Of course, I'm not sleeping, I've gained 20 pounds in 3 months, I spend a good deal of time with excruciating stomach pain, and bloated... but I guess that's the price you pay. And also, of course, my rheumatologist reminds me, I can't stay on Prednisone for long, so now we must figure out what to do next. Since the Imuran obviously didn't work, now we're trying with IVIG. I've already had 3 infusions done, but it's still too early to tell how well it's working, especially since I'm still on Prednisone. So, I guess from here on, it's all wait and see.

Wish me luck!

Monoclonal Antibodies: A credible hope for auto-immune disorders

Coming back for another update on my dealings with Dermatomyositis, this time, oddly, I'm here to share great news. For the first time, in a long time, things are looking up for me.

Just as recently as just three weeks ago, I had a very bad respiratory episode. See, my disease has made waste of my lungs, leaving me with less than half of normal lung functionality. What that means is that anything as simple as a regular cold can knock me down. About three weeks ago one of my little ones came home with a cold. Knowing my condition I should have take precautions to avoid catching it myself... but I didn't, so I caught it. At the beginning it just felt like a regular cold. I had a mild fever for less than a day, and then the symptoms left. But... a slight cough remained. For those of you who know my stories, you know what coughs mean for me. A few days passed, the cough persisted, getting worse, and worse. Then I was getting short of breath all the time. At some point it got so bad I didn't feel like getting out of bed because I had no energy to do anything.

Like being shot...

I haven't posted in a while... the last few months have been a little rough, physically, mentally, and psychologically. Many times I wished to be over with it and just be dead already. My body aching all the time. Out of breath all the time. Gaining weight uncontrollably. And to top it all, meds are making a wreck of me. I can't concentrate, I can't sleep, I can't wake up, I forget things, and I am basically a bipolar monstrosity: one minute I am yelling and shouting like a mad man, throwing and kicking things around the house, and the next I am crying wishing I was dead. It's been hell... and just kept getting worse.

The only semblance to a silver lining was the fact that one of the drugs (Rituximab) might actually have been helping. This was about the only thing that kept me going: the thought that I might actually, at some point, recover completely (or close to it) and be able to get off the meds. And then... it was no more. Whatever it did, it was over. I started getting worse again, so I don't know anymore...

I had this recurrent dream. It wasn't the same all the time, but the situation was always the same. In these dreams, for one reason or another, I got shot. Sometimes it was a robber that assaulted me on the street, or I got and some fight and someone pulled up a gun and shot me. The fact was I got shot. Usually in the abdomen. It was not an instant kill, but somehow I knew it was a fatal shot. Also, in these dreams, help was always out of reach. If I was robbed, I wasn't near a hospital, and the robbers took my phone. I could walk a little, but I knew I would never make it anywhere before I was dead. And so I had a sudden realization that, within minutes, I'd be dead. It was over. I was bleeding internally to death and there was nothing I could do about it...

Getting a little better :-)

Well, just had my latest visit with my rheumatologist and things look a little better. A check a couple of months back revealed that the Imuran was just not helping much with my Dermatomyositis. The CK levels just kept getting higher and higher (with the latest tests showing a level of over 700 IU/L, normal being below 190 IU/L) as the Prednisone dose was tapered down. So, it was clear that something else needed to be done.

At this point, to be honest, I was a bit scared. Well, not scared, maybe just disappointed, or a little depressed. See, I know I'm on a timer here, kind of sitting on a time bomb. Taking Prednisone it's only a matter of time before the bad side effects start to show. From what I've been able to gather, I have a window of about 2 years, before this happens... and I've already been under the drug for almost 1 year. The hope was that Imuran would help, and so I could be taken off of Prednisone. That didn't happen...

Arguing with a Hardcore PC gamer about Piracy

It is not a mischaracterization to say that conversations with the hardcore PC community about software theft follow these tenets:

- There is no piracy.
- To the extent that piracy exists, which it doesn't, it's your fault.
- If you try to protect your game, we'll steal it as a matter of principle.

-- Tycho, from Penny Arcade.

I wholeheartedly agree with Tycho on this one... I've been there myself :-P

Rheumatology consult... Imuran might not be working

Had my latest Rheumatologist visit last week. In general, mostly bad news. The inflammation markers on my blood are very high, having increased a lot from my previous blood test. In fact, I haven't been feeling well the last few weeks, feeling worse as every week passes. I've been feeling weaker, and what worries me the most, the cough is back, and I don't know what that means for my pulmonary fibrosis. Talking to the doctor, it seems the Imuran is just not working, and he's thinking of other treatments.

However, seeing that Imuran is probably the safest choice in terms of side effects (both the annoying kind and the harmful kind), he wants to give Imuran another chance. He gave me a jolt with high dose IV steroids, hoping that would help Imuran kick in. But I don't think it is working. Since then, I've started coughing a lot more, and I'm just worried. His next options (in order of preference) are:

1. Mycophenolate mofetil (Cellcept).
2. Rituximab.
3. IViG.

So, hopefully, one of those will help me. In the meantime, I continue on high dose steroids, which is another problem. And I'm really worried about my lungs. I've already lost about half of my lung functions, so I don't want it to get any worse.

Really looking forward to that next visit, hoping that things will improve.

Sometimes when you try to pretend everything's normal... your disease smacks you back into reality

I am trying to learn how to live with this disease, I really am... but some days I just hate my life a little bit. So, I ran out of Imuran. I messaged my doctor last week asking him to place a prescription for me, but he wouldn't reply. I was getting close to the end of the bottle... then I messaged my rheumatologist. He helped, but due to some miscommunication, I thought he hadn't placed the prescription yet, so I tried to use my old prescription (which has 7 refills left).

I've done this before: they just call the other pharmacy and transfer the prescription, and you're good to go. And the great thing is that there's a pharmacy across the street. Man, life is sweet! So I tell my wife to take the car and don't worry about it 'cause I can easily walk across the street. Well then... this morning I take my empty bottle and go across the street. The nice lady at the pharmacy informs me that it'll just take a moment, but I need to fill a form because it's the first time I use the pharmacy. OK, so I go through the form... and after going through that, the pharmacist tells me that I will have to wait until tomorrow afternoon because they don't have the medicine and have to order it. The point of doing this was not skipping a dose, so I think "well, I can walk to the other pharmacy down the street and get it today". So I tell them that I will just get it somewhere else.

Here's where hell started for me. When you have a disease that affects your muscles the problem is that you don't know at what point they will start breaking down. I learned that during the moving a few weeks ago. I really thought I could make this walk. But at some point the pain started to show. My lower legs were getting sore and swollen... I knew this wasn't good as I was starting having difficulty walking. But I was closer to the pharmacy than I was from home, so I thought I might as well make it worth it and get the medicine. Well the next pharmacy didn't have the medicine either... neither did the next :-( And at this point the pain is getting intense...

As I am starting my way back home, I see a sign for a CVS pharmacy on the other side of the street. It was tough as I couldn't cross there, but had to go around to get through the crosswalk, but I got there. Well they did have it... but they couldn't sell it to me. See, the prescription is from my previous doctor in Kansas, and although they could contact the pharmacy, they couldn't get his DEA number which by California's Law they need to sell me the medicine. So all this was for nothing... I think the lady saw the pain in my face, because she gave a daily dose in my old bottle...

And now... I had to get back home. It was very, very painful. The walk back home, of course, seemed twice as long. But I got home. Right now my legs are very sore, I'm limping... barely walking. In the end I walked 8-12 blocks. Now I know I can't do this anymore...

The only good news is that I figured the misunderstanding with my doctor and he placed the prescription at the pharmacy close to home. So I should be fine tomorrow, without a long walk... the problem is I don't know if I can even walk across the street now :-(

Oh well, hopefully I'll feel better tomorrow...