I got this today from my Google alert for AS stories, about a 19-year old kid in the U.S. with the condition. According to the article, his symptoms were back and feet pain and swelling in legs and knees. My swelling was in my ankles. He went through PT and ``six months of doctor visits and tests'' before his doctor recommended he see a rheumatologist. TEN blood tests later, AS was identified.
Man, Doctor Canlas is good! He's not a rheumatologist but suspected AS and ordered the right blood test.
http://www.dailytargum.com/news/student-runs-to-raise-awareness-of-rare-disease-1.2359142
And here's his blog:
http://www.shouldabeenhereyesterday.org/
Friday, October 8, 2010
Wednesday, September 29, 2010
No More Aircon Lifting
Saw Doctor Lorenzo last week for my 3-month consult. The nurse seemed unhappy that I'd put on 12 pounds. I told them it was all muscle.
Lorenzo was very happy with how I was moving, and the results of my tests. Inflammation, once as high as 70, was in the teens. Other results, were improved or little changed. Even my hemoglobin, which I don't remember him mentioning before, was much improved, he said.
As I told him about trying to surf, I waited for him to react and, when he didn't, said, ``no violent reaction?'' He paused, smiled and then said, with brow furrowed, ``why would you want to do that?'' He said it wasn't adviseable because it required a lot of work from my ankles which they may not be ready for. I asked when they might, he said maybe never!
I asked whether surfing could be the reason for the back pains but he wouldn't quickly agree. He said it sounded more like the result of heavy lifting. Then it hit me that it could have been from helping install the yellow room aircon. He said that must be it. He said what I should avoid are strenuous activities that I can't just stop, like getting on or staying on a surfboard (he doesn't know how quickly I fall off!) or carrying things I can't drop (such as an aircon). Even running is OK because I can stop if and when it gets painful.
He did say my back pains seemed muscular rather than skeletal. When I asked if I should get an x-ray or MRI in time for my next consult he said yes but it could wait till next year because that would be the anniversary of my being diagnosed and starting treatment, even if my MRI was in December.
I will see him again in December. He asked if it was OK to take the usual bloodtests. I said, why not? He said because I was scared of needles. I said I wasn't anymore, and could even watch when the nurse took the most recent one. He was pleased I was giving myself my Enbrel shots. That's progress! he said.
Mechelle, my Pilates instructor, came along to ask about what we should and shouldn't do. Lorenzo said we were free to try different things and that the good thing about Pilates was that it was very controlled. He was pleased to learn Mechelle was a PT.
Lorenzo was very happy with how I was moving, and the results of my tests. Inflammation, once as high as 70, was in the teens. Other results, were improved or little changed. Even my hemoglobin, which I don't remember him mentioning before, was much improved, he said.
As I told him about trying to surf, I waited for him to react and, when he didn't, said, ``no violent reaction?'' He paused, smiled and then said, with brow furrowed, ``why would you want to do that?'' He said it wasn't adviseable because it required a lot of work from my ankles which they may not be ready for. I asked when they might, he said maybe never!
I asked whether surfing could be the reason for the back pains but he wouldn't quickly agree. He said it sounded more like the result of heavy lifting. Then it hit me that it could have been from helping install the yellow room aircon. He said that must be it. He said what I should avoid are strenuous activities that I can't just stop, like getting on or staying on a surfboard (he doesn't know how quickly I fall off!) or carrying things I can't drop (such as an aircon). Even running is OK because I can stop if and when it gets painful.
He did say my back pains seemed muscular rather than skeletal. When I asked if I should get an x-ray or MRI in time for my next consult he said yes but it could wait till next year because that would be the anniversary of my being diagnosed and starting treatment, even if my MRI was in December.
I will see him again in December. He asked if it was OK to take the usual bloodtests. I said, why not? He said because I was scared of needles. I said I wasn't anymore, and could even watch when the nurse took the most recent one. He was pleased I was giving myself my Enbrel shots. That's progress! he said.
Mechelle, my Pilates instructor, came along to ask about what we should and shouldn't do. Lorenzo said we were free to try different things and that the good thing about Pilates was that it was very controlled. He was pleased to learn Mechelle was a PT.
Tuesday, September 28, 2010
Notes for September Doctor Visit
On Sep 20, 2010, at 9:51 AM, falcuazjr@gmail.com wrote:
Kat,
I guess I sometimes feel so good that I forget my meds. I take them within a day though. This time, I forgot BOTH Enbrel and MTX. Will take tonight. I'm hoping Doctor Lorenzo says I can/should try taking Enbrel once a week na lang. Below are symptoms I'll share with and qstns I'll ask. Don't be overly concerned: am just trying to be comprehensive now that consultations will be less regular. Please add your own observations/questions.
1. The first month or so of Enbrel was fantastic. Then there was what I think I've read described as a ``tapering off.'' I sometimes feel very faint versions of the pain I used to feel on the sides of my feet. This sensation shifts from area to area and foot to foot. Sometimes, there's none at all.
2. The worst manifestation of this came as and after I tried to surf in late August. It was much better after a day or two. I don't think it even visibly affect my walking. I don't remember if I mentioned to you, or if you noticed.
3. Should I avoid such exertions -- including running -- and limit myself to swimming? If so, should I not even do the treadmill test in a physical exam? How do I know if I can do a trek? :)
4. For the past two weeks or so, I've felt a kind of tightness in the lower half of my back, particularly when I bend forward and back. This started within a week of my surfing attempt and caused Michelle and me to avoid/eliminate some exercises. This became much less noticeable/bothersome last week and especially after a lot of swimming this past weekend.
5. Is there a way to measure range of motion? I sometimes wonder/worry that limitations may be starting because I don't know how much I was able to do before. (For example, I've wondered about the extent to which I can turn my head, though Michelle says it seems normal.)
6. Pilates and other exercises: what are good for me and what should I avoid. Sleeping position.
Please add if you have any observations/questions! Appointment is 11 a.m. Don't know yet if Michelle can join us.
Thanks!
On Mon, Sep 20, 2010 at 10:27 AM, klimcaoco2@yahoo.com wrote:
Let's ask about lymphoma and the new drug.
Sent from my iPad
Kat,
I guess I sometimes feel so good that I forget my meds. I take them within a day though. This time, I forgot BOTH Enbrel and MTX. Will take tonight. I'm hoping Doctor Lorenzo says I can/should try taking Enbrel once a week na lang. Below are symptoms I'll share with and qstns I'll ask. Don't be overly concerned: am just trying to be comprehensive now that consultations will be less regular. Please add your own observations/questions.
1. The first month or so of Enbrel was fantastic. Then there was what I think I've read described as a ``tapering off.'' I sometimes feel very faint versions of the pain I used to feel on the sides of my feet. This sensation shifts from area to area and foot to foot. Sometimes, there's none at all.
2. The worst manifestation of this came as and after I tried to surf in late August. It was much better after a day or two. I don't think it even visibly affect my walking. I don't remember if I mentioned to you, or if you noticed.
3. Should I avoid such exertions -- including running -- and limit myself to swimming? If so, should I not even do the treadmill test in a physical exam? How do I know if I can do a trek? :)
4. For the past two weeks or so, I've felt a kind of tightness in the lower half of my back, particularly when I bend forward and back. This started within a week of my surfing attempt and caused Michelle and me to avoid/eliminate some exercises. This became much less noticeable/bothersome last week and especially after a lot of swimming this past weekend.
5. Is there a way to measure range of motion? I sometimes wonder/worry that limitations may be starting because I don't know how much I was able to do before. (For example, I've wondered about the extent to which I can turn my head, though Michelle says it seems normal.)
6. Pilates and other exercises: what are good for me and what should I avoid. Sleeping position.
Please add if you have any observations/questions! Appointment is 11 a.m. Don't know yet if Michelle can join us.
Thanks!
On Mon, Sep 20, 2010 at 10:27 AM, klimcaoco2@yahoo.com wrote:
Let's ask about lymphoma and the new drug.
Sent from my iPad
Monday, September 13, 2010
Back
We were in Bali August 26 to 29 and I tried to surf one morning. I could hardly get on the board. At least not for more than a few seconds. Whether that's the result of my just having poor physical coordination or not, I don't know. What I do know is that at least one of my ankles started to hurt midway through the one-hour session.
I don't know if the surfing is related to the back discomfort I noticed within a few days. Or if that was the result of some Pilates move I did. The discomfort starts from the waist- or hip-line up to about a third of the back. At my last Pilates last Wednesday, I didn't do the backward cool-down stretch because I felt the discomfort when I tried. I think the discomfort has subsided by now but I just checked and it is when I bend over backwards that I feel the discomfort.
Will see Doctor Lorenzo on Thursday this week (Sept. 16). Mechelle, my Pilates instructor, will probably join us.
I don't know if the surfing is related to the back discomfort I noticed within a few days. Or if that was the result of some Pilates move I did. The discomfort starts from the waist- or hip-line up to about a third of the back. At my last Pilates last Wednesday, I didn't do the backward cool-down stretch because I felt the discomfort when I tried. I think the discomfort has subsided by now but I just checked and it is when I bend over backwards that I feel the discomfort.
Will see Doctor Lorenzo on Thursday this week (Sept. 16). Mechelle, my Pilates instructor, will probably join us.
Thursday, August 12, 2010
Tapering Off
Over the past few weeks, I've felt what I think is the tapering off of the effect of Enbrel, which some of the material I've read said could happen. I've felt mild discomfort in different parts of my feet. Usually its on the inner sides of my ankles, as before. Yesterday it was actually on the inner roof of one of my feet. Usually it's just on one side. Today's inner-ankle discomfort is on both.
It's a far cry, of course, from the pre-Enbrel days. I'm just disappointed that I may not be able to reduce my dosage soon, not to mention try to get off it.
In the meantime, I've turned 42, so my blog title is inaccurate.
It's a far cry, of course, from the pre-Enbrel days. I'm just disappointed that I may not be able to reduce my dosage soon, not to mention try to get off it.
In the meantime, I've turned 42, so my blog title is inaccurate.
Thursday, July 29, 2010
The Agony of the Feet
I've been looking for books I can order, that maybe Maricar or Timmy can bring back. Chanced upon a guidebook by an organization called Medifocus. The Web site has a sneak peek into the book with the following passage, which is a good description of what I felt:
The pain in ankylosing spondylitis is initially caused by enthesitis that occurs at the sacroiliac joint. The number of sites of enthesitis and their location are two important determining factors as to how much impact AS will have on quality of life. For example, if enthesitis appears in the Achilles tendon at the back of the heel or in the plantar fascia at the base of the heel, walking can be significantly impaired. Enthesitis may deteriorate into enthesopathy - calcification of joints, tendons, and ligaments - that may further impair movement and mobility.
http://www.medifocus.com/2009/preview.php?gid=RH001&a=a&assoc=mda (Page 17)
The pain in ankylosing spondylitis is initially caused by enthesitis that occurs at the sacroiliac joint. The number of sites of enthesitis and their location are two important determining factors as to how much impact AS will have on quality of life. For example, if enthesitis appears in the Achilles tendon at the back of the heel or in the plantar fascia at the base of the heel, walking can be significantly impaired. Enthesitis may deteriorate into enthesopathy - calcification of joints, tendons, and ligaments - that may further impair movement and mobility.
http://www.medifocus.com/2009/preview.php?gid=RH001&a=a&assoc=mda (Page 17)
Saturday, June 26, 2010
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.
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.
Thursday, June 17, 2010
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.
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.
Monday, June 14, 2010
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.
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.
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.
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.
Sunday, February 28, 2010
Thus Far
Looking back, the first sign of my problems probably came a couple of weeks before we climbed Mount Kinabalu in September. I would experience a jabbing pain in the middle left of my torso. I'd experience it I think when I laughed and/or sneezed and/or took a very deep breath. I was worried it would get the better of me during the climb but I didnt experience it then. What I did experience was tiredness, within an hour of our ascent. I was clearly out of shape and resolved to get fit.
When I did experience it again, we went to see Dr. Tyrone Reyes. He poked at me (I dont think we did an x-ray) and said it didnt seem to be skeletal, just muscular and prescribed Arcoxia (I think).
The drugs worked and on my last two days on them, when I felt very good, I went to the gym. I believe it was a Monday and Tuesday. I considered Kinabalu a wake-up call and was determined to get fit. I do remember pounding the treadmill at least at one point.
I believe it was the very next night, Wednesday, when I walked home from work with significant pain in my heels. (In retrospect, I may have felt this pain in snatches in previous weeks, but attributed it to old shoes I made a mental note to change.) It felt like a condition that Bunny Fabella had (or has) so I called her once I got home, crosschecked the symptoms and added a new word to my vocabulary: plantar fasciitis.
(On Sunday, Oct. 25, I went back and forth to Los Banos for work and my back was feeling quite bad by the time we were on our way home. This may have been the night that, when I lay on my front for my now regular heating-pad treatment, I felt like my body was collapsing and cried out in pain and fear for Kat to help me turn on my back. I called in sick the next day. I was also out from Nov. 7 to 10.)
Within a few days, I was also experiencing pain in my right hip and my lower right back. As Dr. TR was away, we went to Makati Med rehab and saw Dr. Melissa Mercado on Nov. 16. She seemed to agree it was plantar fasciitis and seemed to say that the hip and back problems were a result of my ``compensating'' for the foot pain by walking in a way that strained my hip and back. She prescribed some therapy, mostly for the back, which I went through from Nov. 18 to Dec. 3.
When there was little or no improvement -- or my condition worsened in terms of having great difficulty getting out of bed, e.g. -- we saw Dr. George Canlas. The moment we saw him, he said what I had was pinched nerves, ordered an MRI, EMG and therapy. Before we left, I believe he had his therapists work on me and I felt some immediate relief.
The MRI was clear, the EMG showed five pinched nerves. I went for therapy in Makati because Dr. Canlas' clinic was in Alabang. I had at least 4 sessions from Dec. 7 to 14. Toward the end, I felt that the therapist had strained my hip flexors and so we decided to see Dr. Canlas again. After a short consult, his therapists worked on me again and relieved the hip flexor problem. They also seemed to better know what they were doing and so we decided to go to Alabang twice a week for therapy.
Therapy in Alabang (More than 6 sessions from Dec. 15 to Jan. 16) appeared to be effective on my back and legs, which appeared to have atrophied/weakened but which they were beginning to restrengthen. I was concerned, however, because the plantar fasciitis, which I thought had caused the other problems, remained, and could possibly cause the same or other problems in the future. From what I had read, many cases of plantar fasciitis run their course in about three months. My great fear then was that I was not one of the many.
And then, as January rolled along, the plantar fasciitis appeared to moderate significantly. I felt optimistic that it was fading.
If my memory is correct, I had my last therapy session on Sat., Jan. 16. I remember that because I had made a morning appointment which I had to move because we got an interview with Gilbert Teodoro. I moved the appointment to the afternoon. I remember the therapist was a bit aggressive with my feet, which is why for a while after that weekend, I attributed to her what I thought was a sprain.
In fact, I remember only feeling great pain the next night, during or after dinner with my family at a Japanese restaurant. That exacerbated things because we were sitting on the floor and it was an ordeal getting up. I thought maybe I wasnt ready to sit on floors yet. By the next day, there was very obvious swelling. When Kat said Maget F. was at our place, I rushed home for a free consult. She said it looked like a sprain, taught me how to bandage it and told me to elevate it and apply hot compresses.
After a day or so, it appeared to get better. On Jan. 21, I covered Noynoy Aquino's Makati Business Club speech at the Pen, spending most of the time on my feet. By that evening, it was worse than the previous day. I still thought it was a sprain that I hadnt given enough time to fully heal and so continued to bandage it and apply hot compresses.
During the last visit with Dr. Canlas, he asked me to get several blood tests to find out if my slow progress was the result of a certain condition, although he himself said he doubted it. I took the test -- for HLA-B27 -- which turned up positive, a strong sign I may have -- another new word -- ankylosing spondylitis. I saw Dr. Canlas again on Feb. 3 and he referred me to a rheumatologist Dr. Paolo Lorenzo, whom I saw on Feb. 5.
Dr. Lorenzo said based on my symptoms and my profile (young male), it seemed like AS. He prescribed a low, weekly dose of Methotrexate (7.5 mg a week) and two more weeks of Celebrex.
Feb. 19, Friday, was my last day on Celebrex. Feb. 22, Monday, we saw Dr. Tito Torralba. He ordered an x-ray and an MRI of the sacroiliac joints (an addendum if it was in my first MRI, a new MRI if not). He hardly looked at us as he asked questions and even less when we asked questions. He made me stand and poked my back in several places demanding ``does that hurt?, does that hurt?'' ``Not especially,'' I said at one point. ``What do you mean, not especially? Does it hurt or not?'' he said. ``It hurts because you're poking hard,'' I said.
On Tuesday my foot felt numb so I set the earliest appointment I could with Dr. Lorenzo (for Friday) and consulted Dr. Gerry Pedragosa after work. He didnt seem overly concerned and, thanks to Dr. Benjie Benitez, we got to see Dr. Lorenzo the next day, Wednesday, when he had no clinic. He prescribed Prednisone (2 tabs per day for 15 days, 1 tab per day for another 15 days). Scarily for me, he literally took a breath and started talking about Remicade (2-hour I.V. 8 times a year) and Enbrel (2 self injections per week). They're costly, and I'm scared to death of injections.
The steroids worked great on Thursday, my first full day on them; less so in the days since. Today and yesterday, my main pains are on my left heel (I'm not sure if it feels like plantar or something else) and my left ankle. The ankle is painful and sensitive.
When I did experience it again, we went to see Dr. Tyrone Reyes. He poked at me (I dont think we did an x-ray) and said it didnt seem to be skeletal, just muscular and prescribed Arcoxia (I think).
The drugs worked and on my last two days on them, when I felt very good, I went to the gym. I believe it was a Monday and Tuesday. I considered Kinabalu a wake-up call and was determined to get fit. I do remember pounding the treadmill at least at one point.
I believe it was the very next night, Wednesday, when I walked home from work with significant pain in my heels. (In retrospect, I may have felt this pain in snatches in previous weeks, but attributed it to old shoes I made a mental note to change.) It felt like a condition that Bunny Fabella had (or has) so I called her once I got home, crosschecked the symptoms and added a new word to my vocabulary: plantar fasciitis.
(On Sunday, Oct. 25, I went back and forth to Los Banos for work and my back was feeling quite bad by the time we were on our way home. This may have been the night that, when I lay on my front for my now regular heating-pad treatment, I felt like my body was collapsing and cried out in pain and fear for Kat to help me turn on my back. I called in sick the next day. I was also out from Nov. 7 to 10.)
Within a few days, I was also experiencing pain in my right hip and my lower right back. As Dr. TR was away, we went to Makati Med rehab and saw Dr. Melissa Mercado on Nov. 16. She seemed to agree it was plantar fasciitis and seemed to say that the hip and back problems were a result of my ``compensating'' for the foot pain by walking in a way that strained my hip and back. She prescribed some therapy, mostly for the back, which I went through from Nov. 18 to Dec. 3.
When there was little or no improvement -- or my condition worsened in terms of having great difficulty getting out of bed, e.g. -- we saw Dr. George Canlas. The moment we saw him, he said what I had was pinched nerves, ordered an MRI, EMG and therapy. Before we left, I believe he had his therapists work on me and I felt some immediate relief.
The MRI was clear, the EMG showed five pinched nerves. I went for therapy in Makati because Dr. Canlas' clinic was in Alabang. I had at least 4 sessions from Dec. 7 to 14. Toward the end, I felt that the therapist had strained my hip flexors and so we decided to see Dr. Canlas again. After a short consult, his therapists worked on me again and relieved the hip flexor problem. They also seemed to better know what they were doing and so we decided to go to Alabang twice a week for therapy.
Therapy in Alabang (More than 6 sessions from Dec. 15 to Jan. 16) appeared to be effective on my back and legs, which appeared to have atrophied/weakened but which they were beginning to restrengthen. I was concerned, however, because the plantar fasciitis, which I thought had caused the other problems, remained, and could possibly cause the same or other problems in the future. From what I had read, many cases of plantar fasciitis run their course in about three months. My great fear then was that I was not one of the many.
And then, as January rolled along, the plantar fasciitis appeared to moderate significantly. I felt optimistic that it was fading.
If my memory is correct, I had my last therapy session on Sat., Jan. 16. I remember that because I had made a morning appointment which I had to move because we got an interview with Gilbert Teodoro. I moved the appointment to the afternoon. I remember the therapist was a bit aggressive with my feet, which is why for a while after that weekend, I attributed to her what I thought was a sprain.
In fact, I remember only feeling great pain the next night, during or after dinner with my family at a Japanese restaurant. That exacerbated things because we were sitting on the floor and it was an ordeal getting up. I thought maybe I wasnt ready to sit on floors yet. By the next day, there was very obvious swelling. When Kat said Maget F. was at our place, I rushed home for a free consult. She said it looked like a sprain, taught me how to bandage it and told me to elevate it and apply hot compresses.
After a day or so, it appeared to get better. On Jan. 21, I covered Noynoy Aquino's Makati Business Club speech at the Pen, spending most of the time on my feet. By that evening, it was worse than the previous day. I still thought it was a sprain that I hadnt given enough time to fully heal and so continued to bandage it and apply hot compresses.
During the last visit with Dr. Canlas, he asked me to get several blood tests to find out if my slow progress was the result of a certain condition, although he himself said he doubted it. I took the test -- for HLA-B27 -- which turned up positive, a strong sign I may have -- another new word -- ankylosing spondylitis. I saw Dr. Canlas again on Feb. 3 and he referred me to a rheumatologist Dr. Paolo Lorenzo, whom I saw on Feb. 5.
Dr. Lorenzo said based on my symptoms and my profile (young male), it seemed like AS. He prescribed a low, weekly dose of Methotrexate (7.5 mg a week) and two more weeks of Celebrex.
Feb. 19, Friday, was my last day on Celebrex. Feb. 22, Monday, we saw Dr. Tito Torralba. He ordered an x-ray and an MRI of the sacroiliac joints (an addendum if it was in my first MRI, a new MRI if not). He hardly looked at us as he asked questions and even less when we asked questions. He made me stand and poked my back in several places demanding ``does that hurt?, does that hurt?'' ``Not especially,'' I said at one point. ``What do you mean, not especially? Does it hurt or not?'' he said. ``It hurts because you're poking hard,'' I said.
On Tuesday my foot felt numb so I set the earliest appointment I could with Dr. Lorenzo (for Friday) and consulted Dr. Gerry Pedragosa after work. He didnt seem overly concerned and, thanks to Dr. Benjie Benitez, we got to see Dr. Lorenzo the next day, Wednesday, when he had no clinic. He prescribed Prednisone (2 tabs per day for 15 days, 1 tab per day for another 15 days). Scarily for me, he literally took a breath and started talking about Remicade (2-hour I.V. 8 times a year) and Enbrel (2 self injections per week). They're costly, and I'm scared to death of injections.
The steroids worked great on Thursday, my first full day on them; less so in the days since. Today and yesterday, my main pains are on my left heel (I'm not sure if it feels like plantar or something else) and my left ankle. The ankle is painful and sensitive.
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