Failing on yet another drug

By Debra Monday, November 14, 2011

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So, I went on Sulfasalazine at the end of last school year and it worked. I was up, walking the dog, losing weight, feeling "normal." Until late September/early October. Since then I've been trying to convince myself that I was just having a bad day or reacting to weather changes. I've ignored the fact that I need pain pills to get through a day of work, that even on pain pills I only get through Wednesday before I spend half the day shaking. I've overlooked increasingly longer naps every evening, all weekend. Last week I finally had what my husband calls a "come to Jesus moment" and called the doctor.

Of course, seeing the doctor doesn't fix me. I did get a shot of steroids in my hip that had better help more that it hurts by tomorrow. That is supposed to get me through Thanksgiving. In the meantime, we are increasing the sulfa to its maximum safe dose. If that doesn't do it in a month we'll add Plaquenil. The scary part is what is becoming a regular review of all the drugs I've "failed" on. I think my doctor's working me towards understanding that there is only so much that can be done. He asked me today how much longer I planned to work. (Ten years until retirement with a pension. There may be some wiggle room with buying out years or going on disability if I can make it within at least five years.)

So how now? I'm back at work tomorrow, ideally on enough caffeine and morphine to stay on my feet through the day. I've read the incomprehensible "longterm disability" section in my insurance book. I would like to talk to my principal about how it really works, but don't want her to think I'm on my way out any time soon. My illness is still truly invisible. I own a cane, but usually don't need it. I don't know at what point I would be too disabled to teach 12-year-olds all day or how I would prove such a thing.

Chances are, We'll patch me back together again and I'll get through this school year, rest for the summer and dive into the next one. Hopefully I'll wake up feeling more optimistic than I am now. I'm thankful I have this audience to vent to.

New Drug Again (In Haiku)

Comments (5) | Add comment

V, Health Guide

11/15/11 7:25am

It is so tough to work when RA is flaring. I know it must be even tougher when you are in front of a bunch of children, trying to keep them focused on learning. Ugh So sorry you are having trouble finding the right med combo. It can take such a long time, and then there are the constant adjustments. I hope you were able to get some good rest last night, and that you feel better this morning. Any way you could take a day or two off to regroup and rest? BTW, have you tried a biologic like Embrel or Humira?

Blessings,

Debra

11/15/11 8:12am

The steroid shot worked and I think I've moved out of panic attack stage. My concern is that I've already burned through Embrel, Simponi, and Remicade. Humira is still an option, but my Rheumatologist isn't optomistic since it's pretty close to Embrel.

I do have long breaks for Thanksgiving and Christmas. One of the things I'm most thankful for right now, is that Thanksgiving weekend is actually three big meals that I only have to make small contributions to.

V, Health Guide

11/15/11 8:35am

Debra, I know Humira is similar to Embrel, but you might react differently. Humira is really starting to help me. Don't give up hope, sweetie! Yes...Thanksgiving.....ahh...I have to cook, but only for my husband and my folks. It isn't as big a deal as it used to be because we are all on somewhat restricted diets. LOL

Blessings,

Lene Andersen, Health Guide

11/15/11 8:30pm

I'm so sorry you're having trouble finding a medication that your RA would respond to. In your profile, you mention having tried three different Biologics - have you tried more than that? What about the combination of e.g., methotrexate and the biologic? You may want to read my recent interview with Dr. Yazici from the NYU Langone Medical Center regarding remission - he had some interesting things to say about remission versus low disease activity, as well as some encouraging things to say about how to get there. There are two or three new Biologics coming down the pipe in the next year or two, so there are more options coming.

you do have some options in terms of employment that can help you work longer in a way that's easier on your body. You may want to consider FMLA - our Contributor V has had a very positive experience with this. As well, check out my post on working and RA for tips and resources on how to get accommodations at work. You are legally entitled to accommodations under the Americans with Disabilities Act and that post on working has links to the Job Accommodation Network. It's a terrific government organization that can help you assess what accommodations may work for you and how to negotiate with your employer.

hang in there. And write is much as you need - we're here to help you through.

Debra

11/16/11 7:56am

I'm feeling much better now that the steroids have kicked in. (Funny how caffeine-jittery and slightly nauseous is relatively good.)

I have been on Methotrexate through all my other drug experiments. My first year on it was pretty close to remission, so we've kept it even though it doesn't seem to make a difference any more. It's good to know there are new treatments in the pipeline. I seem to run through them quite quickly.

I think part of my panic about work and RA is the maternal nature of my work. So much of whether or not my teaching is successful hinges on the relationship I have with my classes. Once I have bonded with a new group of kids, I have a hard time even imagining leaving them mid-year. Part of that is practical. It is easy for a group of students to become "feral." I started teaching in January (20 years ago) and felt a lot of resentment from kids who were upset about the former teacher leaving. I've seen friends miss chunks of years due to health problems really struggle to get classes back on track. That makes FMLA hard to consider as long as I can still get out of bed.

A little more study on my disability insurance does help me see it as a possible bridge to retirement. I can take up to six years, so if I survive the next four, there is the option of taking disability for the next chunk if necessary. I've seen several collegues who became too sick and grouchy to deal with adolescents take that route.

In the meantime, I need to do some more preventative maintainance. My husband likes to point out that I push myself until I have no choice but to collapse. I've decided to plan more absences as rest days. (I have over 100 sick days saved and get eleven more each year.) Having to improvise sub plans while already disfunctional often makes it seem easier to work sick, so I need to start putting together a few units that can be pulled out at the last minute when I need to lay down for a day or two. Thanksgiving weekend, while I'm still buzzing from my shot and not expected to contribute much to preparations, may be a good time to put together plans for time off in December and January.

Thank you for your suggestions and concerns. No matter how wonderful my family is, it is so important to be able to talk to people who understand how I'm feeling.

Debra.

Failing on yet another drug

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