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.
Subscribe to:
Comments (Atom)