Hydroxychloroquine: A New Friend

My doctor gave me prescription for HCQS during my last check-up...and then asked me to get clearance from an opthalmologist before taking it. I just looked up the drug in Wikipedia and here is what I got:

Hydroxychloroquine is an antimalarial drug, sold under the trade names Plaquenil,Axemal(In India), Dolquine, and Quensyl, also used to reduce inflammation in the treatment of rheumatoid arthritis (see disease-modifying antirheumatic drugs) and lupus. The adult starting dose is 400 milligrams one to two times daily, for several weeks or months, depending on the reaction. This may be reduced to 200 from 400 milligrams per day for maintenance. With systemic lupus, it is especially useful in relieving skin inflammation, hair loss, oral sores, fatigue and joint pain as well as preventing relapse.
One of the most serious side effects is a toxicity in the eye[11] (generally with chronic use), and requires regular screening even when symptom-free. The daily safe maximum dose for eye toxicity can be computed from one's height and weight using this calculator.

And here, is why I needed to get clearance from an eye-doctor first, also from Wikipedia. Hmmm:

Toxicity from hydroxychloroquine may be seen in two distinct areas of the eye, the cornea, and the macula. The cornea may become affected (relatively commonly) by an innocuous vortex keratopathy and is characterized by whorl-like corneal epithelial deposits. These changes bear no relationship to dosage and are usually reversible on cessation of hydroxychloroquine.
The macular changes are potentially serious and are related to dosage and length of time taking hydroxychloroquine. Established maculopathy is characterized by moderate reduction of visual acuity and an obvious "bulls eye" macular lesion. End stage maculopathy is characterized by severe reduction in visual acuity and severe atrophy of the retinal pigment epithelium.

Remembering my Cytoxan Pulse Treatments

"You were much easier to treat when you were 16."

So said my doctor when we were discussing options for my treatment during my last check-up. She was of the opinion that I need to go through the (Cytoxan) pulsing treatment again. I was the opinion that it should not interfere with my work schedule, if we really do need to do it. When I first went through pulse treatment in 1993-1994, I was only 15-16 years old, and so my mother easily committed me to the treatment. Now, I'm 33, working a high-tier role in an I.T. company, sole breadwinner for the family -- locking me down for a series of treatments meant checking my calendar, at a minimum.

Yes, it was much easier back then. The treatment was done in my doctor's office. We settled first for a much lower-priced medicine, Endoxan if I remember it correctly. I had nausea and gagged immediately after the treatment. We shifted to Cytoxan and it was all better. It was more expensive but there was less trouble after the sessions. I also got the hang of it. I knew I always had to hydrate myself the whole time, and it pays to have the I.V. drip water first for a considerable time before they put in the drug. It went on monthly for a year, then every three months, then every six months til the sessions were concluded.

To be very honest, I never thought I'd have to go through pulse treatments again. Anyway, it has to be done. Wish me luck.

110 Pounds Woot Woot!

Well, at the very least the corticosteroids are helping me reach my pre-SLE-reactivation goal of gaining weight. Damn, my appetite is whack these days: I used to have this great office ability to not have lunch and still survive long enough for a quick fast food dinner. Nowadays, aside from lunch I now have the urge to have snacks in between meals: most of the time McDonalds in the morning. Now everyone who sees me says I look like I gained a few pounds. In reality I really did. I'm now 110 pounds based on my last weigh-in in the bathroom. My gut is now large, and hence my office pants are a bit of a stretch, if you get my meaning. I actually had two new office pants tailored using a new larger waistline. I told my doctor about my renewed healthy appetite and she mentioned it was all in the mind. Hmm. Really? Anyway, I think eating a lot is OK, especially for an ectomorph-since-birth like me. The problem I think are the complementary activities that needs to be done to make this lifestyle healthier... like exercise.

WFH

This morning I'm now in the living room, eating breakfast. My request to work from home today (and other selected days of the week) got approved by my boss. So for today I'm not rushing on finishing half of my food, getting dressed and travelling 2-3 hours to the office. It's the closest compromise I can afford vs. the bedrest that my doctor is asking of me.

Definitely there will be some drawbacks in this arrangement. I won't be able to check on my project team physically. Although I have another manager there to do that. My broadband connection isn't that all too fast as well, and there's a likelihood that I'll still be working past the usual business hours.

The good part: I don't get to strain myself travelling to and fro the office; I can take naps if I want to (I just need to remember to log off from intra-office messenger); I can have my mother whip me up a snack from time to time -- since my doctor increased my prednisone dosage, I've been more hungry often.

Let's see how this arrangement goes. Hopefully it helps me get to that lab result that my doctor is looking for, so I get cleared.

Some Things I Lost Due to SLE.

I just got promoted to Senior Manager last March 1 this year, and so those of you reading can probably say that the resurgence of my SLE condition isn't going to help me much. Definitely I'll be more guarded now, take more days off from the office, miss some deadlines, no complete some to-do's more so the nice-to-have's. You'll agree it won't do my office career any good. But then, since SLE manifested itself the first time, when I was in junior high school, I already started losing some stuff:

• My top academic rank. I was the 1st Honor from freshmen to sophomore year. The absences I took (compounded by my lack of abilities in technology and home economics) landed me in 5th place in the junior year, placing me at 4th place by the time I graduated high school. Sure, I passed the entrance exam and graduated Cum Laude at the top University of the Philippines in my college years, but the drop was discouraging back then.
  
• My place as the First Battalion S3. I signed up as a COCC officer as early as my sophomore year in high school. By the 3rd year I was being groomed to be the S3 (office in charge of documents, training) for the First Battalion in our school's cadet corps. I missed out on the summer training because I got confined to the hospital several times. When cadet season was back, I was too frail they assigned me to the Headquarters Cadet Corps, together with the rest who had medical certificates.
  
• My think curly locks. I used to have thick hair wavy hair. Then the alopecia set in.
  
• A home to rest in when I was sick. When I got sick we were living with my aunt in her canteen inside a military camp. News got around about her sick nephew and the camp administration got stricter. They closed my aunt's store and agreed to open it as long as me and my mother would not be living there anymore. We found refuge in my other aunt's house.
  
• My first school year in U.P. I only stayed a few months after which I got confined already in the Philippine General Hospital, where I met my current doctor, who was the one who diagnosed me formally with SLE.
  
• A chance to be part of the UP JPIA Choir. I was actually practicing already, but the SLE symptoms came back and I had to resign my post.
  
• A job at the leading telecommunications company. I was qualified on all fronts, but the doctor at their medical testing facility told me they don't accept people with SLE. No if's or but's were entertained.
  
  These are just some of them, the parts I could remember, the parts I couldn't forget...apart from me and my family's savings. Before you get concerned, I am not hung up on these. I'm just remembering. SLE has, in one way or another, "guided" me to where I am today. So the episode I'm having now with it will be accepted with the same faith and hope.
  

One-week SLE Dash. It's Back.

April 22. I stood for n hours watching the Good Friday procession. Around 40-something saints and holy stations of the Cross paraded past. When we got home, I started to feel some chills.

April 23. Black Saturday. I already have fever, as high as 38.6 degrees Celsius. My lower back had pain and both my thighs were having rheumatism-like pain. Plus I had some cough. Took the usual meds, but decided to increase prednisone dosage. I took one more 5mg tablet in the evenings

April 24. Easter Sunday. Felt better but still had some pain in my legs and some in my back. Continued to take additional 5mg prednisone tablet at night.

April 25. Took a leave to have some tests taken at Medical City: CBC, Platelet count, ESR, Fecal Analysis with Fat Globules. Haggled myself a last-minute schedule with my doctor, Dr.Penserga on Wednesday. Her appointment list was full but I begged to be on it, I didn't think I'd last that long. Scheduled myself for Hepatobilliary Tree as well for the next day. The latter required fasting so I didn't eat starting 10pm.

April 26. Had my ultrasound done by 11:00 and had the results out by 1pm. All normal. Went to the office to work but I really didn't feel like 100%. I really had to see my doctor.

April 27. Asked my co-manager to cover for me in my afternoon meeting so I can take off for my doctor's appointment. Made it to San Juan De Dios Hospital in time. Key findings: ESR is abnormal, high. When I mentioned my lower back pain and the thighs, my doctor went on about risk of myelitis, and about my spine getting inflamed. Scared the s**t out of me. She ordered for a EMG - NCV test. We tried to get me admitted to The Medical City but the schedule was full. All I knew was that I needed to get that test done. My doctor recommended bed rest for the remainder of the week. I didn't argue.

April 28. Called up The Medical City Neurosciences department early to check for available slots within the day. Their earliest was May 5. I called up the San Juan De Dios Hospital Neuro department instead. Scored a 2:30pm schedule for the day. NCV meant Nerve Conduction Velocity test, where they had some current run through me at certain parts of my legs. EMG meant electromyography, where the doctor inserted a needle in some of my leg muscles and asked me to flex and contract. They were measuring my nerves and muscles now. I didn't think lupus would reach this point. Result came on a few hours later. "Motor-sensory mononeuropathy...multiplex of combined axonal-segmental demyelinating type...concommittal myopathy characteristic of SLE patients". Huh. Scheduled my doctor's appointment the very next day.

April 29. Doctor says my muscles have inflammation. We are now in a major active state of SLE now. She doesn't want to be too cautious now that the nerves and the muscles are impacted. She increased by prednisone dosage to 30mg/day and gave me a new friend, Methothrexate, which I need to take in 3/day every Friday for two weeks. As for the Myletis, the doctor says it can only be tested via spinal tap which I don't want. Her main advice is for me to be more aware about my body's condition.

Now I'm in bed, supposedly resting, deciding if I should go test myself by going to work tomorrow. Hmmmmm.

A Cure At Last (?)

My friend Gene tweeted this news from The Washington Post about Benlysta, the first drug to treat lupus in 56 years that was approved by the U.S. FDA. It was created by Biotech drugmaker Human Genome Sciences Inc. (took them 15 years).

To early to celebrate though, the article says that " It only worked in 35 percent of North American patients tested and was not effective for patients with the deadliest form of the disease". However, hooray for my case since "FDA approved the drug for systemic lupus erythematosus, the most common form of the disease".

Then again, I think there's still a long journey for a real cure. The fact about clinical trials working for select profiles only shows there's still a lot of things still need to be understood about this condition. I hope to still be alive and well when that happens, and there is hope because as the article said, "Ten-year survival for patients diagnosed with the illness is more than 85 percent, according to the National Institutes of Health." Counting this year, I'm already on my 18th year. Waaaaaaaaay beyond the 10 year limit.

To read more about the article, you can check out The Washington Post

In A Few Hours, Another Year

It's going to be 2011 soon and that means one more year with SLE in control. I survived one of the most stressful year for me, with the demands of work plus my mother undergoing operation. It was not without unplanned visits to my doctor for some flu or what-not. But I'm here, blogging. I'm here, not in the hospital. I've taken care of people, instead of being cared for in the hospital. Another year of being normal as my condition would allow. I'm happy. And thankful. For every year I'm afforded.