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.
Monday, June 14, 2010
Wednesday, June 9, 2010
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.
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.
Tuesday, June 8, 2010
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.
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.
Monday, June 7, 2010
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.
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.
Friday, June 4, 2010
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.
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.
Monday, May 31, 2010
Decision
Saw Dr. Lorenzo again on Friday (May 28). Although I said I was biased for the IV because it meant fewer objections, he asked if I wouldnt prefer the arm-injected Enbrel because it was a very small needle. He or Kat said ant bite. He can send a nurse to administer the injections. I guess the medicine is so expensive that that is part of the service. I was persuaded.
Left foot wasnt good this weekend. Yesterday I told Kat ``let's get those damned injections na!''
He's prescribing two injections a week for a month and said we can probably reduce to 1 a week after that. When we talked about the ``bridge'' concept, he said there is room for flexibility and we could try it. I'll remain on 5 tablets of MTX a week.
This all assumes I'm cleared for TB. Will take that test by tomorrow.
Left foot wasnt good this weekend. Yesterday I told Kat ``let's get those damned injections na!''
He's prescribing two injections a week for a month and said we can probably reduce to 1 a week after that. When we talked about the ``bridge'' concept, he said there is room for flexibility and we could try it. I'll remain on 5 tablets of MTX a week.
This all assumes I'm cleared for TB. Will take that test by tomorrow.
Thursday, May 27, 2010
Doctor Leong
Saw Dr. Leong Keng Hong on Monday (May 24) in Singapore, and then again on Tuesday, after blood tests I took in between.
He said he also thinks I have AS. He said it seemed very early because there is no fusing yet, though he pointed out inflammation in my right (?) sacro-iliac area. Not damage, just inflammation. Kat liked that he said it's very common. I asked him how many he's handled and he said either 100 or 200. That compares to 10 for Lorenzo.
Dr. Leong said it seemed like I respond to the methotrexate though he would increase the dosage faster. He says his maximum would be 10 tablets, or 25 mg. That's double where I am now, though I think Lorenzo's max. is lower, closer to 20 mg.
I'm wondering now why we havent increased faster. I last saw Dr. Lorenzo at the end of March and he said I should see him again in two months, which is about now. I dont remember him saying I should come back earlier if the dose wasnt right yet, though I remember him saying at the start that while it may take 4 to 6 weeks for methotrexate to first take effect, increased dosages should take effect faster because it's already in my system. Why two months, then? Did he say I should? Did he forget to say I should? Or did he not say so at all? Was I not listening? Was I too busy with elections to think twice?
Be that as it may, feet are feeling really good this week. Maybe two months is exactly right.
For me the newest thing Dr. Leong said was that, if I wanted to get my symptoms ``under control'' faster, I could use biologics as a ``bridge'' for three to six months. To an extent, this could just be a nuance of what Lorenzo has said. But he certainly said it with what seemed to be more confidence. I'd take it together with MTX and continue taking MTX after. If I remember or understood correctly, that's different from switching to biologics, when I'd drop MTX altogether.
I'm tempted, Kat is convinced. I know that sometimes or in some ways she's more affected by this than I am. I know she's saddened and worried when she sees me in pain, or easily tired, or frustrated. Doctor Leong did say that men -- who are more susceptible to AS than women -- put up with or allow themselves to get used to some of its symptoms. (He said this is one reason it's often diagnosed later than it could be.)
She asked and he said there's no downside to biologics and that, unlike MTX, which requires monitoring of the liver, it has no negative side effects. Some material I've read on the internet is less sanguine, though not much less.
Having confirmed that ``as long as the medicine. . . are prescribed. . . you will be reimbursed in full'' (April 6 e-mail from Karen Lim), cost is not a concern. It's needles. (Kat asked if I wasnt worried about the drug coursing through my veins, stressing she wouldnt like the idea. I said it was the getting in rather than the coursing in that worried me.) And this gnawing desire to know whether MTX could have done it, or can do it still.
We see Dr. Lorenzo tomorrow afternoon. we'll decide how to proceed. We'd review with Dr. Leong at some point and then probably at least once a year.
He said he also thinks I have AS. He said it seemed very early because there is no fusing yet, though he pointed out inflammation in my right (?) sacro-iliac area. Not damage, just inflammation. Kat liked that he said it's very common. I asked him how many he's handled and he said either 100 or 200. That compares to 10 for Lorenzo.
Dr. Leong said it seemed like I respond to the methotrexate though he would increase the dosage faster. He says his maximum would be 10 tablets, or 25 mg. That's double where I am now, though I think Lorenzo's max. is lower, closer to 20 mg.
I'm wondering now why we havent increased faster. I last saw Dr. Lorenzo at the end of March and he said I should see him again in two months, which is about now. I dont remember him saying I should come back earlier if the dose wasnt right yet, though I remember him saying at the start that while it may take 4 to 6 weeks for methotrexate to first take effect, increased dosages should take effect faster because it's already in my system. Why two months, then? Did he say I should? Did he forget to say I should? Or did he not say so at all? Was I not listening? Was I too busy with elections to think twice?
Be that as it may, feet are feeling really good this week. Maybe two months is exactly right.
For me the newest thing Dr. Leong said was that, if I wanted to get my symptoms ``under control'' faster, I could use biologics as a ``bridge'' for three to six months. To an extent, this could just be a nuance of what Lorenzo has said. But he certainly said it with what seemed to be more confidence. I'd take it together with MTX and continue taking MTX after. If I remember or understood correctly, that's different from switching to biologics, when I'd drop MTX altogether.
I'm tempted, Kat is convinced. I know that sometimes or in some ways she's more affected by this than I am. I know she's saddened and worried when she sees me in pain, or easily tired, or frustrated. Doctor Leong did say that men -- who are more susceptible to AS than women -- put up with or allow themselves to get used to some of its symptoms. (He said this is one reason it's often diagnosed later than it could be.)
She asked and he said there's no downside to biologics and that, unlike MTX, which requires monitoring of the liver, it has no negative side effects. Some material I've read on the internet is less sanguine, though not much less.
Having confirmed that ``as long as the medicine. . . are prescribed. . . you will be reimbursed in full'' (April 6 e-mail from Karen Lim), cost is not a concern. It's needles. (Kat asked if I wasnt worried about the drug coursing through my veins, stressing she wouldnt like the idea. I said it was the getting in rather than the coursing in that worried me.) And this gnawing desire to know whether MTX could have done it, or can do it still.
We see Dr. Lorenzo tomorrow afternoon. we'll decide how to proceed. We'd review with Dr. Leong at some point and then probably at least once a year.
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