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. 

Lupus And RA Deficit, And Finding A Treatment That Works

Lately, I’m starting at a deficit.  I don’t wake up feeling energized and refreshed, even when I sleep for 10 or 12 hours. 

My boyfriend has made the point that I’m not a morning person.

That hasn’t always been the case.

I used to be a morning person, a late night person, pretty much an any-time-of-day person.  That was before I got sick. 

Now, when I wake up stiff and in pain, and it takes me time to get going, it’s my arthritis that’s talking, not my personality.

When I was in the midst of the latest flare I had, I wished that I could just go to sleep and wake up when the flare was over.

But there’s so much I would miss.

And the thought of sleeping my life away is scary and depressing.

Sometimes you do have to drag yourself out of bed and will yourself to face the day.  I get that.  And sometimes you feel better after you do, but sometimes that’s just totally impossible.

My flare seems to have abated, which means that it looks like Humira caused my lupus to flare.  Which means that I am off Humira for good, and it’s back to the drawing board.

We knew from the beginning that one of the side-effects of Humira is a lupus-like syndrome.  This worried me from the start, since I already have lupus.  And we should have worried, because that’s exactly what it did to me.

I ran into my rheumatologist the other day.  I had been meaning to e-mail him, but hadn’t got around to it.  He suggested that for sure we go back to low-dose daily Prednisone. 

He also suggested adding Tacrolimus to my treatment regimen.  I did some looking around.  Most of the articles about Tacrolimus and RA, and the few on lupus, are all relatively recent, within the last three years.

I’m not convinced.  This drug started out as an anti-organ rejection drug – like CellCept, which I was on several years ago – has been used to treat colitis, and is now being used for people with RA.  The safety and efficacy, from what I read on PubMed, is mixed. 

I wish this was an easy decision, an open-and-shut case.  But it’s not.  The way I’m feeling right now, I could live with this.  On the other hand, I get tired a lot more easily than before; I get winded from walking up three flights of stairs to my apartment.  There are subtle changes I see that don’t make me happy.  I’m not back to where I was pre-Humira or pre-Humira-induced lupus flare.  And that’s frustrating.  It’s also getting colder, and the winter always does a number on my joint pain and mobility. 

This is really the first time that I’ve had a lot of questions after reading about a treatment.  Because while we can’t plan for the things we don’t know about yet, we can plan, and should be vigilant about, the things we do. 

I worry that my chronically elevated liver enzymes, which my PCP recently postulated may be autoimmune hepatitis, my ongoing gyno issues, and the fact that I would like to have a child someday, are all making me reason against Tacrolimus.

I feel like before I start TAC, I need to see a liver specialist, talk to my PCP about my gyno issues, and see if I can meet with a high-risk obstetrician or genetic counselor to talk about what we would be looking at if I begin TAC sometime in the next few months. 

As much as I appreciate my rheumatologist for all that he does for me, he hasn’t been very good at approaching the “How will this impact my future fertility?” question.  He seems to think we should only factor it in when it isn’t hypothetical anymore.  But it’s not.  It’s not a question of if, but when.  And it is also something that I really care about. 

Maybe it would be different if the situation was “take this or you die,” but that’s not the case right now.  And I hope it never is.

Is it bad that the thought of daily Prednisone gives me nightmares?  I’ve always said that I wouldn’t let fear get in the way of my treatment. 

So I’ll say it again.  I’m torn.  Go back to the drawing board and experiment with a new med or tough it out for the next few months and see if I can make it on my own? 

I could tell by the look on my rheum’s face that he has doubts, too.  And that concerns me more than anything else.

I’ve realized lately that I have to pick my battles and commitments.  I can’t do everything.

There are some really promising things happening in my life right now, and while I would love to focus on the good, I am filled with anxiety about the future.  I wish there was a clear-cut answer here.  I wish I knew which decision to make that would be the most efficacious. 

On the one hand, I won’t know if I don’t try.  On the other hand, though, what if I am putting myself at risk for worse things than what I am facing right now? 

And I appreciate so much that my mom is doing some of her own research on TAC, and that my boyfriend says that he will support whatever decision I make.  My health has to come first, but in this case I don’t really know if that means starting TAC or not, especially someone who can’t be on Methotrexate, like me, and cannot be on a biologic, either.

If anyone has heard about Tacrolimus, or on the off chance that you’ve taken it, please, please, please comment or e-mail me.  I would love to hear from someone who has been on it successfully for RA.