Humira Pen Is Out; Humira Pre-Filled Syringe Is In

 That’s right folks.

After another botched Humira injection, I have decided to throw in the towel on using the pen. 

But since I feel like Humira is working well to control my RA, I e-mailed my rheumatologist to see if he could prescribe the pre-filled syringe instead.

Clearly, the information on the Internet regarding the pen is mixed.  Some people can’t stand the pain the pen causes.  If you’re like me, it’s the click that the pen makes that is so anxiety provoking.

And I think this is part of the problem.  After reading a lot on the Internet before deciding whether to go on Humira, it really freaked me out.  People were saying how awful the pen was, and it made me really scared. 

I think sometimes the Internet can be our worst enemy.  While having so much information at our fingertips is great, giving us the ability to hear from others that we might not otherwise, sometimes it can be TOO MUCH INFORMATION.

And I don’t want this post to contribute to anyone’s fear who might be reading this.  This is my experience ONLY.  It doesn’t mean your experience will be the same.  I just got very used to injecting using a regular syringe when I was on Methotrexate, and that’s clearly what I’m most comfortable with.

Like I’ve said before, in the grand scheme of things, this should not have been such a trying experience.  There certainly are worse things that I’ve experienced since I got sick.  However, the Humira pen experience has caused more tears and more anxiety than anything else in recent memory.

I didn’t want to wuss out, but at some point, when I’m four for seven (barely), I decided that I couldn’t do it anymore.  It’s just not working for me.

And the thing that really told me this is sort of messed up.  Even though the injection was botched, I was so relieved.  Despite missing a dose, I felt loads lighter that it was over.  And that shouldn’t be.

I understand those who say we should be willing to endure a certain amount of pain in order to gain ground on our health.  And while I agree with that – I was willing to deal with the pain of the Humira injection – I would have jumped at the opportunity to get a lobotomy over continuing to traumatize myself with these injections.  And that also shouldn’t be. 

I’ve been less anxious for a colonoscopy than I have been for my Humira injections, although I wasn’t actually giving myself the colonoscopy, so…

There’s a difference between someone else injecting you, and you injecting yourself.  This is why injections are typically given in a doctor’s office.  If I wanted to do this, I would have gone to medical school.

While it’s common knowledge that I have never wanted to inject myself, I moved past that fear.  And while I wanted to not be one of those people who had to go off of the pen because I couldn’t tolerate it, the pen has been a huge stumbling block for me. 

And injection after injection, it hasn’t gotten any easier.  In fact, my anxiety has only increased.  When I start having breakthrough pain a few days before, I am reminded of the impending event.  And then the day of, I am a ball of nerves.

The other thing I didn’t like was that the pen never felt the same way twice.  The Humira instructions are very adamant about rotating sites, so that may have been part of it.  Also, doing it every other week, as opposed to once a week with Methotrexate, I think it is harder to get used to. 

But this journey has been further complicated.  While my rheumatologist was very willing to make the switch, it was by no means instantaneous.  I e-mailed him Wednesday evening and he e-mailed me back quickly.  Then I called the pharmacy at the hospital on Thursday to make sure the prescription was ready before I made the trip, and the only thing they had received was a prescription for the pen.  I called my doctor’s office, and spent 15 minutes on the phone talking to a nurse. 

The staff at my rheumatologist’s office is very hit or miss.  Some people are great.  You talk to them and whatever you need gets taken care of right away.  Some people aren’t.  You have to call multiple times, tell them the same story over and over again, and still don’t always get results. 

This was my experience this time. 

I was passing by the hospital on Friday, so I went in at just before 2 p.m. to see if the prescription was ready.  They told me that nothing else had been submitted, since the incorrect prescription the day before.  So I went up to my doctor’s office to try and get things straightened out. 

As I was getting off the elevator to leave the hospital, the nurse who I had spoken to on Wednesday, who was supposed to call me back that day and didn’t, called me.  She asked if I had gotten my prescription.  I told her that no, I was at the hospital, but hadn’t been able to get it.

She told me to stay put and that she would call me back.  She never did.  I finally went back to the pharmacy.  One person tried to tell me that the pen is the only method of delivery for Humira.  I tried to calmly explain that the pen and syringe are different.  Then they told me the insurance rejected the prescription because it was too soon to fill.  I explained the situation, told them I wasn’t able to get my last dose, and that if they approved the syringes, this problem would never happen again.

I feel bad that the pharmacy had to fight with my insurance company, but honestly, better them than me.  I also feel that my rheumatologist’s office could have done a much better job of helping to me to secure the medication.  It doesn’t bode well for them if I’m off my meds.    

But at this point, that’s neither here nor there.    

I spent over four hours at the hospital.  The pharmacy closed at 6.  At 6, I was still standing there, waiting, and not knowing what was going to happen.  I didn’t know what I was going to do if they would have sent me home empty handed.  I might have refused to leave.  I’m pretty sure I would have blown a gasket. 

By this point, my nerves were so frayed that I couldn’t even think about doing the injection.

So I waited until Saturday, and I couldn’t do it.  I was just totally paralyzed by fear.  And I was totally freaking out.  Normally, my Humira shot is on Wednesday, so I was already four days behind, and starting not to feel good.

My parents and sister drove over an hour so that my mom could come and give me my injection.  I have to apologize to them and my boyfriend for causing them so much stress.  My anxiety just totally ran away from me, and I could not get it in check.  But I am a lucky girl to have such wonderful people in my life.

I want to emphasize, again, that this is only my experience and not indicative of others’.  However, if you are having problems using the pen, I would definitely talk to your doctor to see about switching to the pre-filled syringes.  I only wish that I would have been a better advocate for myself, and had tried to get the change completed sooner than I did.  I know myself well enough to know that things weren’t getting easier for me.

As I suggested in the post I submitted for the latest edition of Patients for a Moment, Humira has been my Achilles’ heel.  And I’m not ashamed to admit that.  In fact, I think we all have something that we just can’t handle when it comes to the chronic illness experience. 

Like my mom said, I’m not Hercules.  And she’s right.  We can’t all do everything, and that’s okay.  It’s frustrating to me that the Humira pen was so traumatic that I digressed in terms of being okay with needles, and being okay with injecting myself.  I was one hot mess on Saturday.  Rather than beat myself up, though, I am going to try and move forward, and hope that these injections get easier as time goes by.  I hope that because the syringe is more failsafe than the pen, I will get my confidence back, and this will no longer be the hellish ordeal that it has been for the last few months.    

Getting Over The Humira Hump (With Lots Of Help)

Hopefully it will be smooth sailing from here on in.  A girl can dream, right?

I’d be lying if I said that being on Humira is easy.  Because it’s not.  But it’s necessary if I want to be functional.  At least that’s what I’m telling myself, to convince the irrational side of my brain that I can and should be injecting myself.

On Tuesday, my boyfriend asked me if “we” were injecting tomorrow.  This should have steeled my nerves, knowing that I am not alone in this.

But when Wednesday rolled around, I was no longer feeling confident.

I hemmed and hawed for over an hour, only to have the thing go off by itself on the couch.  Then I cried.  Part of me thought we should be laughing because we injected the couch.  Not literally.  Unintentionally.  But we did. 

(Don’t our mothers always tell us not to cry over spilled milk?  Does the same adage apply to spilled Humira?)

But the other part 0f me, the part of me that was totally emotionally fried did not find this funny at all.  All that time.  $750 down the drain just like that.

It put the score at me, 2, Humira, 2.

I wasn’t sure if my insurance would be willing to cover a replacement.  It costs $1,700 a month for two doses.  Would they be willing to shell that out again, because of my mistake? I hoped so because I couldn’t quite imagine what the next two weeks would have been like without it.

Just hope that we never have an issue like this, again.  That the fridge doesn’t freeze or break.  That the couch doesn’t get medicated again.  Because I’m not sure my insurance company will be so kind in the future.

Anyway, my boyfriend went to the hospital with me.  I’ve always said that the person who does that is definitely a keeper.  Even when I was dating a doctor, there was always an excuse for why he wouldn’t go to appointments with me.  But this guy, he signed on, especially considering I figured we could end up at the hospital anywhere from an hour to three or four. 

So I go to the pharmacy.  They told me to call my insurance company and come back, because if the pharmacy went to put it through, my insurance would reject it.  So I called my insurance company, and they told me to go back to the pharmacy.  I was totally ready to fight.  But the pharmacy told me that my call did the trick, and the prescription went right through.  Let’s just hope that the next time I need to get it filled, they don’t reject me.

Then I dragged my boyfriend up to the rheumatology clinic, to find a nurse who could give me the shot.  At first, the clinic staff seemed like they weren’t going to let me see a nurse.  Um, really?  A physician in your clinic prescribed this medication.  Again, I was ready for a fight.  But they got a nurse, who spent a lot of time with us.  She assumed that it was my first injection.  And she was surprised that I hadn’t had any training in the office, and that I had requested the Humira Starter Kit myself, directly from Abbott, rather than being given it in the clinic.

She was awesome.  Although she refused to give me the injection.  She said I had to do it myself.  So I did.  She showed me other places on my leg where I can inject, and how to do it so that I don’t actually have to pinch the skin.

I think that all of this could have been avoided if a nurse would have sat down with me to begin with.  But they didn’t.  I ordered the started kit from Abbott myself.  The first injection, which went the best so far, was all on me.  I think when we told the nurse this, she was a bit taken aback. 

It’s not that I’m incapable of injecting myself.  It’s that I lost a lot of confidence and got a lot more nervous after sort of messing up the second injection.  It’s made me gun shy. 

 

I don’t want it to be that I worry and obsess for all of the days in between doses.  That’s no way to live.

I have to be able to tell myself that 10 seconds of pain is worth two weeks of feeling pretty good.  The rational side of me totally gets that.  But the irrational side tells me that this is the worst pain that I’ve ever felt, that injecting myself is unnatural and that I shouldn’t do it, etc.  You get the point.  The irrational side totally wants to talk me out of it, while the rational side can push the button and be done with the whole thing quickly.

Baby steps.  I have to set manageable goals for myself.  And I have to celebrate when things go well.  These days, that’s no small feat.  If I’m not crying at the end, well, that’s a plus, too. 

I’m learning that it’s okay not to be okay.  It’s okay to be sad, or scared, or frustrated, as long as it doesn’t get in the way of trying to be healthy.  It’s okay to cry.  It’s okay to want my boyfriend to be there for hand-holding and moral support.  It’s okay to ask for help.

I see now that the hemming and hawing is the problem because it adds more variables into the mix.  If I can get in and get out, there’s less of a chance of things getting messed up or the pen accidentally going off when we’re not ready for it to. 

This journey has been a rollercoaster.  But it’s nice to know that, even at the level of hospital pharmacies, insurance companies, and rheumatology clinics, that there are people who are willing to help, and who are willing to recognize that being chronically ill is hard.  It takes a toll, both physically and emotionally.

And it’s nice to know that I’m not alone on this journey, that there is someone willing to stand by my side, willing to fight for me, willing to console me and dry my tears, and willing to spend several hours in the hospital with me, when he doesn’t like hospitals or could have easily been doing something else.  It’s something that I’ve wanted, but have never really had before.        

Every Now And Then I Fall Apart

This isn’t the post I had intended to write.  How many times have I said that before?

Originally, I was going to write about the side effects of Humira.  But they don’t seem so bad anymore.  But I’ll tell you about that, anyway, and then I’ll tell you about the really bad part.

I really wanted to title this post “the attack of the black snot,” but I figured no one would read it with a title like that.

So two days after starting Humira, the injection wasn’t so bad, and I felt like I had more energy. 

My nasal passages were feeling a bit constricted, but seemed like a small price to pay.

Then I blew my nose…

As I looked at the tissue, I realized it was dirty and wondered what could have possibly gotten on a tissue that I had just pulled out of the box. 

Then I blew my nose some more…

And I realized that the Kleenex was not dirty.  It’s what was coming out of my nose!  And this was not dried blood.  This was black mucus.

It was like a magician’s trick, when he hands you a clean towel and suddenly your dirty fingerprints appear all over it.

After the back and forth with getting on Humira, I decided to avoid having to bother my rheum.  So I called the 24-7 Humira nurse line.

The woman I spoke to was very nice.  But when I explained to her what I was experiencing, she gave me the answer that no patient, in uncharted territory, ever wants to hear. 

She told me that she had never heard of this before.  And that since it was something I had not experienced before – oh yeah, black snot, happens all the time – she suggested I contact my rheum.   

My first concern is that my brain is eroding inside my head.  My second concern is that I may not be able to stay on Humira, and I really don’t want to experience again having to go off of a drug that makes me feel better, because it is doing bad things on the side.

But this has not been the worst of it.

Wednesday was my second dose of Humira.  I used my right leg, which I never have injected into before.  But I figured it wouldn’t be much different than the first injection.  I clicked the button and immediately my whole leg was burning.  And before I knew what was even happening, Humira was running down my leg.  I figure I got at least half the dose in me.

But I don’t fully understand what happened.  All I can say is that I panicked and freaked out.  I wasn’t expecting it to feel the way it did, and I guess I was unconsciously trying to rid myself of the pain.

Then I cried, for close to an hour.  I was so frustrated and upset with myself. 

Lately, where my rheum’s office is concerned, I am dealing with idiots.  The last two months have meant more legwork on my part, having to follow up after mistakes and errors.  And now I feel like I am an idiot, too.

How could I have done something so stupid?

My boyfriend came over about an hour after the injection mistake, and found me curled up in bed, crying.  He consoled me, and then took me out for the night.   

(And props to the boyfriend for being so amazing.  He’s present for me in a way that no other guy has been before.   And this was the first time he saw me cry.  I’m not a pretty crier.  But he was awesome.)

I don’t know why I got so emotional about it.  I really don’t.  I messed up.  And it happens.  We all make mistakes.  But when messing up involves my health, it’s not easy to brush off.  I feel like I’ve failed myself, my doctor, my boyfriend, and my parents.

In the grand scheme, one botched Humira injection is minor.  But right now, it feels major. 

I guess it all got me into the thought process of if I wasn’t sick, I wouldn’t be giving myself a shot.  And if I didn’t have to be doing this, there wouldn’t be anything to mess up in the first place.

And the thing that gets me is that if someone, like a nurse, was giving me the injection, it would have been okay.  It’s not that I couldn’t handle the pain, it’s just that my reflexes took over and did the natural thing – removed the thing that was causing pain.

Maybe I didn’t pinch the skin tight enough.  Maybe I hit a vein.  Maybe.  Maybe.  Maybe.  I can’t explain why this injection felt so drastically different than the first one.  Maybe the first time I was prepared for the pain that didn’t even end up happening.  And this time I wasn’t expecting there to be pain.

I’ve decided if the next dose goes fine in my other leg, than I’m just going to keep using my left leg and not use my right.  

I got the Humira starter kit.  But there was nothing in there I could find on what to do if you screw up a dose.  I can’t imagine I’m the only one who this has happened to.  I suppose I could have called the nurse line again, to see what they recommend, in my case.  But since we can’t know for sure how much really got in and how much didn’t, I don’t think it really matters.

 

Do our doctors realize how stressful all of this is?  Do they realize how much the physical is tied into the emotional, and vice versa?  I don’t want to live my life in two week increments, biding my time between Humira injections.  I don’t to live in fear that I don’t feel like I can adequately deal with the situation.  I want to be the master of my own health situation.  I don’t want to feel that I am reliant on others who don’t have as much of a stake in this as I do, like many of the staff members at my rheum’s office.

(In the most recent case, my prescription was called in to the wrong pharmacy.  I was finally able to talk to someone who knew what they were doing, and it got called in to the correct place.  But it is a compounded medication that they have to make up and then mail me.  It’s Friday and I only have enough of the medication through Tuesday.  Thankfully my pharmacy is at least on the ball now that they have the prescription.)      

But I have to move on from this.  I have to be able to gear myself up for my next dose in two weeks.  I need to not psych myself out by thinking that this one mistake defines the rest of my relationship with this medication.  And ultimately, I need to settle the score.  Because right now, Humira has one up on me.  And that’s unacceptable. 

Humor Me, Humira!

As I said in my last post, the time between getting off of Methotrexate and on to Humira took several weeks longer than I expected it to. 

I got the TB test done, and didn’t hear from my doctor that the results were negative until a week later when I e-mailed him.

Then came the adventure of trying to procure Humira… 

My doctor submitted the prescription to CVS.  When I went to CVS to pick it up, they told me that my insurance refused to fill the prescription at a commercial pharmacy and that it had to be submitted to a specialty pharmacy. 

So I e-mailed my doctor and called his office, saying that CVS had rejected it, and I had a number where they needed to submit it, but didn’t know what the pharmacy was or  where it was located.

This was Tuesday morning.  I got a call back on Tuesday evening, saying that the prescription was submitted to the specialty pharmacy.

As luck (I guess you can call it that) had it, I was going out to the place where the pharmacy is yesterday.  I don’t drive, and it is almost a 40 minute bus ride.

I got to the place Wednesday morning, and immediately went to the pharmacy.  They told me they had no prescription on file for me.  Frantically, I called my doctor’s office, and happened to get the person who had left me a message that the prescription had been submitted.  I explained the situation, and she said that actually, my doctor needed to review the prescription, and hadn’t got around to it yet.

She said she would try and make sure that it got taken care of so that I could pick up the prescription when I was done with my other appointment, and not have to make another trip back.

Thankfully, when I went back to the pharmacy, they had received the prescription.  Then they had to call my doctor’s office because they read the prescription as twice a week rather than every two weeks.  That would have been really bad!

Not feeling well, and being totally exhausted, were not a good combination, and I feared that one more obstacle in my way might send me over the edge, and that I would stop being nice and agreeable, and demand action. 

Nobody ever said that this journey was going to be easy or convenient. 

But finally, I had Humira.  I felt like I had some prized goods in my possession. 

And considering how much it costs – over $1,700 a month (of which my insurance covers nearly all, as long as I get it filled at a specific specialty pharmacy) – I guess I do.  I feel like I have to guard it with my life.

Getting here was a much longer road than I ever expected. 

I guess I knew that one day, I might have to consider the more aggressive treatments for RA.  And here I am.  I think that less than 24 hours after my first injection, it is too soon to tell the efficacy, but thankfully, I certainly don’t feel any worse. 

The good news is that, to me, the shot was very tolerable.  It wasn’t the most comfortable thing in the world, but it wasn’t the fire and brimstone that I made it out to be.  I did not go nuclear on my thigh.  I was very nervous, especially since so many of the stories online sounded awful.  But I’m not judging.  I believe that people feel what they feel.  But it makes me realize that I shouldn’t pour over the Internet for these things, because it only sought to scare me.

And my boyfriend was with me.   I’m not sure which one of us was more nervous, but he was a real trouper, getting knee deep in my health stuff so early on in our relationship.

I am extremely grateful.

And I was glad that my reaction was one of, oh, I worried for nothing, that wasn’t so bad; instead of, wow, it was worse than people made it out to be.

I will say that I find it ironic that you have to be rather dexterous to pinch the skin with one hand and push the button to inject with the other, since most of us with RA struggle with dexterity.  But I do think, that since you have to alternate sites, it seems to me like it will be easier to go from thigh to thigh than it is with a traditional syringe.

I am glad that when I see my rheum in a little less than a month, I will be able to say that I have had several doses of Humira.  I was worried that I would have to go, tail between my legs, saying that I just couldn’t handle doing the injection.

But as experience has taught me, I would rather deal with 30 seconds of pain than the unending pain that lupus and RA have caused me over the last few years.  You can’t really put a price on feeling well and being functional, which I have not felt since I stopped taking MTX.

And once again, I am grateful to the chronic illness blogging community that has rallied around me during this time of stress and uncertainty as far as my health is concerned. 

Bring Out The Big Guns: Humira, Here I Come

When it comes to health stuff, there is never a good time for things to go wrong.

After my latest round of blood work, my liver enzymes are back up, and my white blood cell count is down, again, so my rheumatologist is recommending I stop taking Methotrexate for good, and try Humira.

(At least I don’t have to worry about the MTX shortage anymore…)

Medication changes make me really nervous, and knowing that it will take several months to kick in, I worry about the period of not feeling good that is likely to ensue.  I kind of thought things were getting to a more stable place, but I guess not. 

It’s a bummer because MTX worked so well in helping my arthritis symptoms, but ultimately, the things it was doing in the background were not so good.

And I guess we’ve done this dance with MTX long enough.  It was the same when I was on the oral form; off, on, up, down.  The injectable form definitely had less noticeable side effects, but seemed to not work for my overall health.  

So my rheum told me to do some homework on Humira, and let him know if/when I want to start it.  Right now, I can’t be on nothing, because I won’t be able to function at a very high level.  And I guess I have to be willing to try everything once.  I can’t rule it out until I’ve tried it, although many of the things I’ve read about Humira are just downright scary. 

Humira is a biologic, unlike MTX, which is a DMARD (Disease Modifying Anti-Rheumatic Drug).  Biologics actually change your DNA.  That’s pretty scary, right? 

And people say the injection hurts like all get out. 

I feel like I had just gotten used to the MTX injections.  I had figured out a way to do the shots myself, I had come to terms with this once weekly routine, and I had made peace with the fact that this ritual was helping, rather than hurting, me.

And now I start at the beginning again.  With a new medication, and all that comes with it.

While I’ve heard about these medications from TV commercials, and patient bloggers who are on them, I haven’t paid that close attention to them.  I was hoping that things wouldn’t have to get to this point, to be honest.  But clearly MTX is neither a temporary nor permanent solution for me.

And I think we’ve followed the natural progression of things.  First I was only on Prednisone, and then we added in Plaquenil.  Then we tried CellCept.  Then we got rid of CellCept, and tried oral MTX.  Then we got rid of Plaquenil and added Quinacrine.  And we moved from oral MTX to injectable MTX.  And I was hoping that the Flexeril-MTX-Prednisone as needed-Quinacrine regimen would work.

But no such luck.  So here I am, finding myself at the door to the biologics, which are really my only hope at this point.

I hate to be in a situation where I feel like meds are my only hope.  I wish it weren’t that way.  I wish I didn’t have to say that in order to be functional, I need the meds. 

And I wish that these decisions were easier.  I have gone back and forth about this, and I’m still thinking that I might chicken out.  But what will that do?  Only prolong the agony? 

I need to find a medication regimen that works, and that doesn’t try to kill me in the process…      

I hate this game, but I have to be strong, put up a fight, and win.