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.
Friday, June 4, 2010
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.
Thursday, April 1, 2010
Feeling Good
I felt fine for one or two days after I got off steroids. Dr. Lorenzo said I did stand up much better but said I still walked like I was ``walking on egg shells.'' That dejected me a bit. Only afterward did I realize he didnt even see me walking without my Birks. He said the higher ESR convinced him all the more it was AS, but he told me to ``work with'' him to try to find the right dosage of methotrexate, which he upped to 12.5 mg from 7.5 mg.
By the weekend and through Monday and Tuesday (yesterday) I was hurting some or most of the time. Monday was particularly bad. Today (Wednesday) though, I was feeling pretty good. There seemed to be more pain in my heels than in my ankles.
By the weekend and through Monday and Tuesday (yesterday) I was hurting some or most of the time. Monday was particularly bad. Today (Wednesday) though, I was feeling pretty good. There seemed to be more pain in my heels than in my ankles.
Wednesday, March 24, 2010
Steroids
It's supposed to take my last steroid this morning. Actually thought about not taking it at all, so that Dr. Lorenzo would have a better view of my real state when we see him tomorrow.
I've felt pretty good the last few days, including yesterday. There was less than the usual pain when I got off the bed, and I was walking pretty normally in a short time. And this was, of course, before I took my morning pill. So almost 24 hours since I took the last one. The night before, after dinner with the bureau and Rebecca, I found myself walking relatively quickly and painlessly to the car with Rebecca. She had noticed my feet when she arrived on Monday morning and seen me walk my way in the office but probably didnt think of it that night: I gave her little reason to. (I came to dinner from Pilates, which may partly explain why I was feeling so well.)
At least once, Kat pointed out that I get off the bed and walk into the dressing room as one man and walk out as another.
The inner-ankle pain is usually more on the left, though there have been a couple of days when it was more on the right. The heel pain transfers more often, or is often about equal. But there have been times in the last few days when I step into my blue Birkenstocks and feel almost absolutely normal.
I guess the worst I felt in the past week or so was after standing a long time at a book launch last week. Mental note: no long standing. Even after that, though, I dont think my ankles swelled up as much as they have in the past. They're still swollen though, and I havent seen the bone there for months now.
Sometimes -- like just now -- Kat asks me why I'm shuffling and I realize I am without needing to. I've gotten used to shuffling. That's another mental note.
Once in a while in bed my foot still jiggles on its own. Kat says she sees it happen when I'm asleep too. Should ask the doctor about that. Also, there are still pains in my lower back especially in the morning. It takes me a while to stretch and warm up in bed.
I've felt pretty good the last few days, including yesterday. There was less than the usual pain when I got off the bed, and I was walking pretty normally in a short time. And this was, of course, before I took my morning pill. So almost 24 hours since I took the last one. The night before, after dinner with the bureau and Rebecca, I found myself walking relatively quickly and painlessly to the car with Rebecca. She had noticed my feet when she arrived on Monday morning and seen me walk my way in the office but probably didnt think of it that night: I gave her little reason to. (I came to dinner from Pilates, which may partly explain why I was feeling so well.)
At least once, Kat pointed out that I get off the bed and walk into the dressing room as one man and walk out as another.
The inner-ankle pain is usually more on the left, though there have been a couple of days when it was more on the right. The heel pain transfers more often, or is often about equal. But there have been times in the last few days when I step into my blue Birkenstocks and feel almost absolutely normal.
I guess the worst I felt in the past week or so was after standing a long time at a book launch last week. Mental note: no long standing. Even after that, though, I dont think my ankles swelled up as much as they have in the past. They're still swollen though, and I havent seen the bone there for months now.
Sometimes -- like just now -- Kat asks me why I'm shuffling and I realize I am without needing to. I've gotten used to shuffling. That's another mental note.
Once in a while in bed my foot still jiggles on its own. Kat says she sees it happen when I'm asleep too. Should ask the doctor about that. Also, there are still pains in my lower back especially in the morning. It takes me a while to stretch and warm up in bed.
Saturday, March 13, 2010
Downhill
Halved my steroid dose midweek, as prescribed. I think I could feel the reduction the first couple of days. Last night and especially when we woke up this morning, I felt very stiff in my lower back and sides.
We got up at 10, I had a bun of three-day old muesli bread and popped my steroid pill. Then we went swimming at Rockwell. I used my fins for the first time and was happy I could finally propel myself with my legs. Then we had lunch at Pancake House then visited Pa for an hour or two at Makati Med.
We got up after Dr. & Mrs. Benitez arrived, and she said it was good to see me without a cane. (She's seen me using one a couple of months ago.) We left the room and saw Tita Nit and Tita Chery approaching. Tita Nit asked about Pa, then asked about me. I whispered I was on drugs so I felt fine. But as soon as we started walking again, I realized I was walking quite well and told Kat. She agreed. I felt very good.
After a nap, we watched a concert at Salcedo Park. We went separately. So, when I walked down the several steps in our basement parking, I had no one to show that I was touching the wall for support very lightly. When we got back, I tried it again and then dragged her out of the apartment into the fire escape to show her.
What happened? Was it because we slept till 10? Was it because the flippers flexed my ankles? Was it because the methotrexate was really kicking in?
With the good comes the silly though. After I showed Kat not once but twice that I could walk down steps, we found out we had locked ourselves in the fire escape. We had to walk down until we saw someone at a window on the ninth floor and asked her to let us in.
I have a new pain, at the very back of my ankle. But I'm not worried about it. It seems like the pain from using a muscle that hasnt been used much in a while, which I think I got from walking down steps and walking faster today.
Here's hoping.
We got up at 10, I had a bun of three-day old muesli bread and popped my steroid pill. Then we went swimming at Rockwell. I used my fins for the first time and was happy I could finally propel myself with my legs. Then we had lunch at Pancake House then visited Pa for an hour or two at Makati Med.
We got up after Dr. & Mrs. Benitez arrived, and she said it was good to see me without a cane. (She's seen me using one a couple of months ago.) We left the room and saw Tita Nit and Tita Chery approaching. Tita Nit asked about Pa, then asked about me. I whispered I was on drugs so I felt fine. But as soon as we started walking again, I realized I was walking quite well and told Kat. She agreed. I felt very good.
After a nap, we watched a concert at Salcedo Park. We went separately. So, when I walked down the several steps in our basement parking, I had no one to show that I was touching the wall for support very lightly. When we got back, I tried it again and then dragged her out of the apartment into the fire escape to show her.
What happened? Was it because we slept till 10? Was it because the flippers flexed my ankles? Was it because the methotrexate was really kicking in?
With the good comes the silly though. After I showed Kat not once but twice that I could walk down steps, we found out we had locked ourselves in the fire escape. We had to walk down until we saw someone at a window on the ninth floor and asked her to let us in.
I have a new pain, at the very back of my ankle. But I'm not worried about it. It seems like the pain from using a muscle that hasnt been used much in a while, which I think I got from walking down steps and walking faster today.
Here's hoping.
Monday, March 1, 2010
The Philippine AS Society
Saw Dr. Lorenzo today, who interpreted the results of the blood tests I took last week. I knew that my ESR result -- 52, compared with a reference range of 0 to 15 -- was high. What I didnt know was that the ``positive'' result of my CRP test was also a bad sign, as ``positive'' often is in medical matters.
They're both inflammatory markers, meaning, as I understand it, my body is fighting something and, at 52, it's not just something in my foot.
One of the main reasons I wanted to see him so soon was to confirm that it was OK to take steroids for as long as he prescribed: one month. I had read somewhere (that's the boon and bane of the internet!) that seven days was long, and that side-effects included weight gain and (horrors!) hair loss. He said the dose he prescribed was low.
I tried to steer the conversation toward second opinions, particularly abroad, by saying there must be very few cases locally. He said there are 100 or 200 rheumatologists and each one must have at least a couple of cases. (He earlier said he had handled about 10, which isnt much experience.) I said, but there are no AS societies as there are in the US, the UK, or Singapore. He said that's true, but if I wanted to start one, he'd help me. OK, that didnt lead where I thought it would.
What really pleased Kat about this visit? The doctor wrote out and handed to me, without our asking for it, his cell phone number.
They're both inflammatory markers, meaning, as I understand it, my body is fighting something and, at 52, it's not just something in my foot.
One of the main reasons I wanted to see him so soon was to confirm that it was OK to take steroids for as long as he prescribed: one month. I had read somewhere (that's the boon and bane of the internet!) that seven days was long, and that side-effects included weight gain and (horrors!) hair loss. He said the dose he prescribed was low.
I tried to steer the conversation toward second opinions, particularly abroad, by saying there must be very few cases locally. He said there are 100 or 200 rheumatologists and each one must have at least a couple of cases. (He earlier said he had handled about 10, which isnt much experience.) I said, but there are no AS societies as there are in the US, the UK, or Singapore. He said that's true, but if I wanted to start one, he'd help me. OK, that didnt lead where I thought it would.
What really pleased Kat about this visit? The doctor wrote out and handed to me, without our asking for it, his cell phone number.
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