AS Society Again

Saw Doctor Lorenzo on Thursday (June 24). Obviously he noted the improvement but asked me -- and, when I wasn't helpful, Kat -- if the walk I demonstrated was my normal walk. Kat said it could be a bit slow and asked if I could treadmill. Doctor Lorenzo said yes, although, he said, ``it'' will just come back.

The bloodtest I took the day before showed my inflammation was down to 41. (It was 52 in Feb. and 71 in March but I just noticed now that in my April test in Singapore, before I started taking Enbrel, it was already 40, so it would seem like it's the MTX that's brought it down.) The liver and kidney tests remained OK. Still, Doctor Lorenzo told me to reduce MTX to four tablets a week.

He gave me prescriptions for three months and told me to see him in three months. I asked if we should get an x-ray. He said if we wanted to document, it should be an MRI and only after six months of Enbrel. I think now that that doesn't make sense: it's the condition I want to document, not the Enbrel, and my first and last MRI was in December.

I asked either how many patients he prescribed Enbrel to, or how many could afford it. He said I was in the one or two percent. He said he doesn't even mention the drug to those who can't afford it. How does he know they can't afford it? ``You've been assessed by Doctor Lorenzo'' when you walk into the office, he joked. I asked if there were any medicine-assistance programs. He said there weren't but that if I tried to work on one, he'd support me. I said he should do it because he was the one making money off the disease. He said he wasn't making money off Enbrel because he hardly prescribed it. He said he's president of the rheumatalogy association for three years and would support me if I tried to organize an AS society or a medicine-assistance program.

Brisk Walking

There remains a very localized sensation in what I think is my right sacroiliac joint. It's difficult to describe something so small as pain: I imagine it's the size of a small coin. Elsewhere I feel good. People notice I'm walking better. I walked briskly across the Tower One lobby this morning.

The sickness I felt earlier this week is gone, though I still get some phlegm and have some of that tingly feeling I get in my back when I'm sick sometimes.

Minor Paranoia

Injected myself again on Saturday (June 12), this time at home and with Kat watching. I couldnt do it faster than the last time. Kat laughed. And teared up. She said it was difficult to see me having such a difficult time. She said she should do it. I said she could after I learned to do it quickly. She asked if it'd be easier if she wasnt watching. I said maybe. It was.

Early in the weekend, I dont know if it was that day or Friday, I started to feel that pain in my lower right back, in what I imagine is the sacroiliac joint, and another in my left buttock (another classic sign of AS). I wondered for a few moments if it was a coicidence that this restarted right after Enbrel got the pain in my feet and elsewhere more or less under control. Or if the Enbrel somehow revived them. Or if I feel them more now because I dont feel the other pains. Or if it's just my bad luck.

By Sunday morning, I thought I had it figured out. I was sick -- probably still am a bit -- and this was magnifying my aches and pains. At least I hope that's what it is. I bundled up to try to get rid of the fever and woke up well enough to swim with Mellissa and Gene. And swimming is always good.

On the bright side, I can definitely see my ankle bones again. Swelling is definitely down.

I Injected Myself Today

The injection itself took 10 to 20 seconds. The preparation and psyching up, 5 to 10 minutes.

I pinched my skin, took a deep breath, aimed the needle, traced its path, asked Gigi the nurse how fast it should travel. Repeated this several times. Two or three times she asked if I was OK and once or twice asked if I wanted her to do it, and even moved her hand close to take the injection away from me. I dont know if she was taking pity on me, or just impatient.

Finally, I did it.

Day Three

Back and other parts of the body feel great. Dont know if the drugs are working on them or, because the drugs have let me walk normally, they're no longer stressed. Did much more in Pilates last night.

There's still some residual sensation in inner foot, probably just weak after all these months and there's a very dull discomfort on the back sole of left foot -- maybe drug is wearing off -- but walked down the garage steps with ease this morning.

Second injection tomorrow.

Enbrel

Got my first injection of Enbrel on Saturday morning (June 5). It was the first time I'd watched an injection go into me, and probably anyone else. Even when it's in the movies, I close my eyes.

A nurse came over to teach us. Kat says I was brave during the injection but in a daze afterward.

I think I started to feel better as the hours went by, even as Kat and I prepped for dinner. At dinner, Bet still asked why I was limping though. But when we finished cleaning up, I was able to take my sandals off and mop the kitchen floor barefoot with little discomfort.

I felt so good yesterday that I forgot to take my MTX. (Only remembered as I left for work today.) I did a little jump for Kat's mom to show her how well I was and had little trouble walking down the stairs at Campa last night or in the garage this morning.

Kat told me not to feel bad that I didnt take it sooner. I dont, really. I told her I think it's good I know how difficult the condition can be, especially, I said half jokingly, if I help form an AS group where not everyone will be able to afford biologics, or have a medical plan that covers it. Also, knowing how difficult the condition can be, I'm more likely to stick to my swimming and Pilates and get into other physical activity. I may not have even gotten into them if I'd taken Enbrel early and not gone through the pain.

When I was first diagnosed, Dr. Lorenzo said that if I wanted to try MTX first, we could do so for six months and then review. I was happy with that. In fact, it's just been four months. So I'm ahead of schedule.

Bad Week/Last Week

It's been a bad week for my feet, especially the left one. So bad that my back has been aching already. Shades of the pains I felt long ago. Kat said my condition is so not-understandable. One week OK, next week no. Not linear, she said. The pains are mostly on the left side too.

I think we're both looking forward to my being cleared today -- via a TB test -- for Enbrel. Will take it ASAP. Unfortunately, while I was hoping it came with free injection by Lorenzo's nurse (because it's so expensive), he said it's P500 each time. I guess I or Kat and I have to learn to do it ourselves.

Hopefully it acts as quickly on me as it has on some other patients.