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.    

Small Earthquakes In Humira Land

Ugh.  I definitely dread every other Wednesday at around 5 p.m.

It’s Humira Time. (It’s like Hammer Time, but not…)

The dust has settled from the original earthquake that brought Humira into my life.  But there are still aftershocks, small tremors that threaten to knock me off my game. 

I am glad that I was told that I could inject into the outside side of my leg.  The burning does not seem to be as bad as it is on the top of the thigh.

And I am glad that we have decided to coincide date night with Humira injections.  It is a good incentive to get it done quickly so that I can spend some quality time with my man.  But I hope that are lives won’t always run on this schedule.  I hope that I won’t always fear having to travel and doing my injection away from home. 

I also hate the click!  So much anticipation occurs.  I’m okay once I’ve pushed the button.  But it’s actually pushing the button, and then not freaking out about what is coming next, that really gets me.  

In the grand scheme, a painful/uncomfortable injection every other week is not a big deal.

But we all have that thing that throws us over the edge, that we have a hard time coping with.  And it may not be the most painful or difficult thing that we have ever experienced.

It may be that it sets off something within us that festers until it becomes this huge, insurmountable thing.

I hate the way I feel in preparation for my injection.  My hands shake, my stomach hurts.  I hate that my boyfriend sees me in such a state, but I’m glad that he got to see how seasoned I was doing the Methotrexate injections. 

Because I was so good at doing them.  My boyfriend was over one Saturday morning, early-ish in our relationship, and I asked if he minded if I did my injection while he was there.  He and I had a conversation, and I went about the whole process in about two minutes.  It felt good.  I was confident.    

There have been more tears shed over the Humira experience than I think there has been about any other specific part of my illness journey (other than overall).

I am grateful to my boyfriend for being helpful and supportive in this regard.  He has sat by me while I’ve hemmed, hawed, cried over one botched injection and one injection that the couch received, for going to the hospital with me, both of us prepared for a fight with both my doctor’s office and my insurance (which ultimately went more smoothly than we both were hoping for).   

I’ve always had an irrational fear regarding spinal taps.  Thankfully, with all I have had to experience since I got sick, that has not been one of them. 

But a question I ask a lot is about where you draw the line. 

Because really, it’s the anticipation that’s the worst part.

I guess in my denial, I hoped that if we could get my disease well enough under control, I wouldn’t have a need for biologics.  I wouldn’t have to rely on drugs to keep me functioning. 

While I have definitely made strides, it has just been a far longer process than I expected.  The feelings that I would have expected to go away by now are still here front and center. 

I should be grateful.  When I was on oral MTX, I couldn’t do anything the day I took it.  With Humira, I can go out and enjoy date night.  It’s still messing with my sinuses, but it doesn’t seem as bad as it was at first. 

Maybe some of you can’t believe that I’m still talking about this.  But I am.  And I will until it no longer feels so huge.

I think that what has really hurt me emotionally is the second injection.  I went into it feeling pretty confident.  The first injection went fine.  It didn’t hurt at all, and was nothing like what so many people had written about.  And then, the second injection burned so bad that I pulled the pen away halfway through, letting half the dose run down my leg, before I was even conscious of what was happening.

So now I am in a rut.  A rut of If I don’t feel scared, if I get too confident again, I’ll mess things up.

This is totally irrational, I know.  But explain that to my brain, when every other Wednesday at 5:00, I pout, try to avoid hitting the button at all costs, and then once it’s done, wonder what all the fuss was about. 

It doesn’t feel good, but I wouldn’t say it’s super painful.  It’s uncomfortable.  At least the burn hasn’t felt like it did that second time, when it literally felt like someone was searing my flesh. 

It sets off this chain of thoughts that I verbalize: I can’t do this.  I don’t want to do this.  This is stupid.  This is ridiculous.  I don’t want to do this anymore.  I’m making this bigger than it is. 

I realize that the original Humira “earthquake” wasn’t caused by me.  I didn’t know what to expect, and so it is natural to feel nervous and unsure.  But the tremors, the aftershocks, are all on me.  I’ve created them by letting my fear and anxiety take over, and I have to go to a place where that doesn’t happen.  A place where I can push the button and be done.  A place where there isn’t a big production or a natural disaster, for that matter, over the process.  I’ve created the storms.  And now I have to find a way to banish them. 

You Win Some, You Lose Some, In The Chronic Illness Game

If you read my previous posts as of late, you know that my transition off of Methotrexate and on to Humira has not been a smooth one.  I botched my last Humira injection, which was pretty traumatizing for me.

So as the two week mark approached, I have been filled with anxiety about my next injection.  Today was hard.  I decided that since I was alone last time, that my boyfriend be present this time, as he was the first time.

I had him hold the actual pen so that I wouldn’t, consciously or unconsciously, move it away while the injection was being given. 

The injection definitely burned again, but wasn’t as bad as last time.  But we got it done.  And when I say “we”, I mean “we”.  It was definitely a team effort.  My confidence and nerves were totally shot.  I felt like I couldn’t get a good grip on the skin to pinch it, and every time I went to push the button, I chickened out.  But I finally did it. 

It’s amazing to go from a teary, freaked out mess, to feeling so great once it was finally over with.  I have to keep reminding myself that this is a new thing for me.  This is only the third injection.  This whole pen deal definitely has more of a learning curve than I was expecting.  But I guess it was that way with the Methotrexate, too. 

Ask me in a few months, and hopefully this will be second nature to me then.      

Anyway, on to other things…

The headache situation hasn’t changed.  I had a bad one last week.  My BF was amazing, though.  And I was able to recover in a few hours, which was a surprise to me.  However, since I’ve been off the MTX, it confirmed for me that these headaches are definitely still a problem, and need to be dealt with.

And I finally got someone to take notice about my headache situation.  I explained to my rheum that I had been referred to the neurologist that has clinic at student health, and that he was totally unhelpful.  I explained how I used to get headaches, but not like the ones I am getting now.  I told my rheum that they get worse when I move my neck.    

He immediately perked up at this.  He said he is concerned that I could have arthritis and inflammation in my neck and cervical spine.  So he sent me for x-rays.  He said that an MRI might be considered, but he doesn’t want to expose me to that amount of radiation if he doesn’t have to.

But guess I said all the right things, the buzz words, this time, to make my rheum take notice.  I am relieved that this is actually being looked into.  Finally.

So I was able to get those x-rays done today, while I was at the hospital.  So hopefully we will have results soon, and I hope beyond hope that I am proven right.  Not that I want to have arthritis in my neck, but that there is some concrete explanation for these headaches that I am having, for the pounding pain on one side of my head or at the base of my skull, and for the considerable worsening of them when I move my neck. 

And finally…

I am now doctor shopping for a new PCP.  I got a letter in the mail last week that mine is retiring.  This is a nightmare for me, as I’m sure many of you can imagine.  It’s hard to find a PCP who is willing to take on a complicated patient like me.  Plus, she is also my gynecologist.  So I am not looking forward to trying to find a new PCP, especially one who specializes in women’s medicine, and is willing to deal with a 26-year-old with multiple chronic illnesses. 

Bah!  Ugh!  A nightmare, indeed.

So for now, I’m celebrating the victories I had today with my rheum and Humira.  And now I have to figure out what to do about my PCP, since my insurance requires a referral from my PCP for all specialists I see. 

I wish this post was a little more sewn together, but I’m not feeling all that together at the moment.  I’m just trying to plug along, and reminding myself that in the chronic illness game, you win some and you lose some.

I lost with the MTX, but hopefully I’ll win with the Humira.  I won on the headache front because I finally got my rheum to take notice.  I lost on the PCP front, but hopefully I will find someone who was as good as she was. 

And of course, I’m winning on the boyfriend front because he’s awesome, and present to me in ways that no one else has been before. 

All and all, I guess as of right now, the odds are in my favor.  And I don’t feel like I’ve been able to say that in a long time.