When Health Is The Focus Again

It’s been a while. Mainly because my health hasn’t been the center of everything. It’s so easy to write when things aren’t going well. It’s harder to write when they are.

In the last two years, I bought a house and got married. And of course, lupus and rheumatoid arthritis have been there and figured in. We bought a ranch because I didn’t want to be forced to navigate stairs if my health declines. A lot of what went in to planning our wedding was done with chronic illness in mind. But even so, those events were at the center.

Now, due to circumstances beyond my control, my health is front and center again. Several months ago, I found out that Quinacrine was no longer available – more about that in another post. As a result of this, my rheumatologist suggested that I go back on Plaquenil. I had been on it before, with my previous rheumatologist, with little success. I told my current doctor that, and he wasn’t convinced. Even when I told him that I had been taken off of it due to elevated liver enzymes, he told me that was incredibly rare with Plaquenil.

So I played the game. I started taking Plaquenil again, just to prove a point. And prove a point, I did. Pretty much every side effect that comes with Plaquenil, I had. I had headaches, extreme nausea, and severe itching. I switched to taking the medication at night instead of the morning and that helped with the headaches and nausea, but I continued to have extreme itching all over my body.    

When I told my doctor my symptoms, he told me that I must have an intolerance to Plaquenil and that I should stop taking it. He didn’t offer any other options. Well, other than telling me that I could make a killing if I could find a way to manufacture Quinacrine myself.

And with this situation, I feel like nothing has changed in the 12 years that I have been sick. Because of my “overlap syndrome” of lupus and RA, many treatments aren’t an option for me. Methotrexate didn’t work and caused elevated liver enzymes and low white blood cell count. Cellcept and Tacrolimus were no good either, for various reasons. Humira caused me to go into the worst lupus flare I’ve ever experienced and so that means that typical biologics for RA are basically off the table for me.

So for now, I’m on Imuran and that’s basically it, at least until I want to get pregnant. And then the jury is out because my rheumatologist and gynecologist disagree on whether I can remain on Imuran during pregnancy. More than likely, I’ll have to give it up, too.

And then where will I be? The ultimate test. How will I be on nothing at all? Will I be able to function?

It’s beyond frustrating.

And right now, I don’t feel great. My labs don’t look great. It all feels like a crapshoot. There are no clear answers or easy decisions. There’s just better or worse.

My old rheumatologist used to measure progress based on whether I was having more good days than bad days. For most of the time I saw him, I was having more bad days than good. But things got better. And I’ve maintained that. Going off of Quinacrine and back on Plaquenil changed things. Suddenly, I was having more bad days than good.

So for now, I wait. Wait for solutions and treatments that don’t exist, wait until the answers become clear to me.

The Private Struggle Of A Medication Transition

The last two and a half weeks have been hell for me.  They’ve been a blur, really. 

There have been some good moments, but they have been between periods of complete and utter exhaustion, fatigue in which sleep only adds to it. 

My knees have felt like they are made of glass, like they could shatter into a million pieces at any moment.  My sinuses have felt like they were going to jump out of my head.  I have had horrendous heartburn that has kept me up at night.  I’ve felt like I’m constantly coming down with something, like I am about to get sick.  But I know I’m not.  That’s just the immunosuppressant working its magic.

The worst part, though, aside from the fatigue, is the fact that I have felt nauseous and dizzy a good portion of the time.

I just hoped that in whatever way my body was adjusting to this new medication, that it would just do it already, because the last few weeks have been brutal. 

I’ve never had such side effects with a medication that have lasted for so long after I first started taking it.   

When I finally e-mailed my rheumatologist, he told me to stop taking the morning dose and just take the night one instead of both.  I guess I waited so long to be optimistic that things would get better, but then when they didn’t, the answer seemed so simple and obvious that I should have made contact with my rheum sooner.

Basically, I’ve been overmedicated.  So it seems highly unlikely that the situation would have resolved itself without a decrease in dosage.

I don’t want to give up on this medication (Tacrolimus) yet.  I know I haven’t been on it long enough to know if it is truly working.  But I also didn’t think I could survive the next month to month-and-a-half of waiting for it work, if I was going to be so non-functional.

I fell asleep in class the other day.  It has really been a struggle for me to get myself where I needed to go.  The fatigue I’ve been experiencing I haven’t seen the likes of since I first got sick, and literally would wake up, go to class, come home and sleep.  Luckily my schedule is a little bit flexible, however, I don’t like having to forego things because I’m too tired.    

I had my first mandatory labs last week.  Does it make me a bad person to wish that the blood work came back out of whack?  Well, that was before I talked to my rheum and he suggested I lower the dose.  But the reality is that the labs all came back normal.  Freakishly normal.  My liver enzymes have never been so normal.

I feel like such a jerk.  I was so adamant about not going on the Rituxan, I dreaded having to complain to my rheumatologist that I didn’t think I could wait the requisite two months to see if this stuff was going to work. 

But thankfully, it doesn’t look like we are going to have to have that conversation.

You truly don’t realize how bad you feel until you start feeling better.  In one day, I graded thirty papers.  I still don’t feel 100%, but I think I can safely say that I am finally on the upswing.  I accomplished more in one day than I have in the last two weeks combined. 

But the thing that makes it so tough to deal with is that you can’t really talk about it.  As I’ve lamented various things, my boyfriend – who has been amazing throughout this difficult period – has told me, “But you have an excuse.”  But I don’t.  At least I don’t feel like I do. 

How do you explain to people who don’t understand that you’re trying a new medication that is supposed to suppress your overactive immune system, and stop your body from attacking your organs and joints, but you just haven’t been able to tolerate the medication?  So you have been sleeping in spurts of three hours, only to be up for an hour or two, and need another few hours of sleep to recover from the time you’ve been up?  And this is after sleeping at least eight hours at night.

“Normal”, healthy people can’t begin to understand that.  And I’m glad they don’t.  But it’s hard to explain erratic, strange behavior when you simply don’t want to talk about it.  When healthy people can’t imagine being on a medication that has such an effect on your body.  Medication is supposed to help, right?  But what happens when the cure is worse than the disease?  What if you have to go through hell to see the light at the end of the tunnel?  If you haven’t been there, you don’t know, you can’t imagine the lengths you will go to in the name of health. 

But it’s so hard.  All of the medications we try for Lupus and RA – or most chronic illnesses, for that matter – have side effects.  They all have their pros and their cons.  And even when they work, they all take getting used to.  So it’s hard to explain how transitioning off of old meds and onto new ones can honestly be worse than your actual illness.  But how do you explain that to people who don’t know?  How can they possibly begin to understand that until your dose gets regulated and your body gets used to a new medication, that it’s full court press?  That it sometimes takes all the time and effort you have?  That it sucks you dry?  That it literally can all but stop you from functioning? 

I don’t know how to explain that to people who aren’t chronically ill.  And so, I think to make it easier on myself, I don’t.  But it might make things harder for me if I don’t.  So if I have to, I just say that I’ve been sick.  It’s not totally a lie and not totally the truth.  And you don’t get any sympathy from anyone if you explain that you are sick all the time.  They really don’t get that, either.

The last two weeks, I have literally had to scrape myself out of bed and drag myself to where I’ve needed to be.  I can’t really imagine how I would have gone on like that if I hadn’t talked to my rheum, and he suggested that I only take Tacro at night. 

I guess I assumed that since Tacro is used at much lower doses for those with Lupus and RA, as opposed to people that have had organ transplants, that I wouldn’t have as many side effects, either, but I was totally wrong on that front.  And this isn’t intended to me a “poor me” post.  To the contrary, I am grateful that, for the moment, every little step does not take an immense amount of effort, that I can do more than just sleep.  It’s too soon to know if the Tacro is working, but at least for the moment, I can say that it’s not destroying my life, either.  Baby steps…

When you have a chronic illness – especially an invisible one – most of the struggle is only seen by those you are most intimate with.  But the struggle feels visible to us because we live it every minute of every hour of every day.  For us, the struggle is never-ending.  We simply cannot turn our illnesses on and off at will, and neither can we truly anticipate what the effects of a medication may be.     

The Mind Is A Terrible Thing To Waste…

So I’m not going to risk it.

I made a command decision.  I am not ready to expose myself to the risk Rituxan poses to my brain.

If I only had RA, I would be far less concerned.  But because I have both Lupus and RA, I am especially concerned about the risk of Progressive Multifocal Leukoencephalopathy (PML) – an incurable and nearly always fatal brain disease.

I know that with any treatment, there are risks.  And maybe I’m naïve to feel that the risks to my liver and kidneys are one thing, but risks to my brain are another. 

I have accepted the fact that my body doesn’t work right, and I have learned to cope with that, but the thought of my brain turning to mush is just too much.    

In this chronic illness game and on this chronic illness journey, there are always decisions to be made, decisions I never expected to be faced with this early in life or at all, for that matter. 

And we lose pieces of ourselves along the way.  Literal pieces that come from biopsies and blood draws.  But figurative pieces, as well.  We learn to dissociate during medical procedures.  We give pieces away when we give more of ourselves than we ever thought we would.  Like I said I would never do self-injection, and then eventually, I did.  The threshold of what you are willing and not willing to do in the name of health seems to always be slightly in flux.   But there has to come a point, unless you are desperate enough, that you put your foot down.  That you say no, I can’t, and I won’t. 

I’ve always said that I don’t want to stand in the way of my treatment due to fear. But I didn’t want to have to worry for as long as I was on Rituxan and for a significant amount of time after I was off of it that every time I forgot a word or tripped, that I was literally losing my mind. 

To me, my mind feels like too big of a piece to potentially lose.

And there is so much falling into place in my life right now, and while feeling good isn’t necessarily one of them, there’s so much I want to do and accomplish.  And I can’t do those things without my mind. 

Obviously I know that there are no guarantees.  And no one could tell me for sure that I would or wouldn’t get PML if I took Rituxan. But PML would be almost completely out of the realm of possibility if it weren’t for Rituxan.  So part of me felt like if I had the opportunity to prevent it, I should. 

And this isn’t to say that one day it might not be the right treatment for me.  I know I’m not functioning at a super high level right now, but I can get out of bed.  And it’s not like if I don’t take Rituxan, I am going to die.  So for right now, it’s not the right treatment for me.

Like I say, this hasn’t been an easy decision.  I’ve vacillated back and forth, back and forth.

 

I thought a lot back to the quote from Shelby (Julia Roberts) in “Steel Magnolias”: “I would rather have thirty minutes of wonderful than a lifetime of nothing special.” 

And I realized that that’s the opposite of how I feel right now.  Was it worth trying to get through everything happening in the next two and a half years to potentially not get any more time than that?  My answer is no.  It has to be.  There’s so much in the coffer that I could explode, but I can’t share some of it just yet. 

The big thing is that this is the first time since I got sick that I’ve looked into the future, really looked into the future, and saw something there besides illness.  I know that sounds sad, and maybe it is, but it’s also the most hopeful I’ve been in a long time.  And I didn’t want to take a chance of being robbed of that future for something that my doctor wasn’t 100% sure was the best option for me. 

I guess if you go with your gut, you can’t make the wrong decision.  And in this case, both my head and heart were sending me signals that this wasn’t the right choice for right now. 

The first infusion was scheduled for next weekend, and the next for two weeks after, like it’s supposed to.  But I cancelled them.  And oddly, I feel a hell of a lot more empowered for making the decision not to than I did for making the decision to start them in the first place.

So I’ll be starting Tacrolimus in the hope that, that will provide some relief of both my Lupus and RA symptoms.  And in my view, the biggest risk for me with Tacrolimus is that it won’t work.  And if that does happen, I’m no worse off than I am right now, before I’m on it.

And maybe Rituxan will one day find itself back on my treatment plan.  But I don’t like the idea of just picking random drugs from a list of those available.  I want to make sure that what I try is not only worth the risk, but also makes sense based on my body’s past response other medications.

My other issue is that – while the risk of PML is about .001, which is undoubtedly very small – I’ve been in the .001 before.  I’ve had things happen health-wise that for all intents and purposes shouldn’t have happened.  So when told that the odds are .001, it’s easier for me to focus on the .001 than the other .999. Because I want to be avoid being in the .001.  I have too much happening right now, and I need my brain to do it.