Rheumatoid arthritis and failing humira

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humiraNormally I would be injecting Humira tonight.  But no more.  I have done my 12 weeks, and have felt no benefit for at least the last six of those.  And the side effects, particularly the depression and anxiety, are not worth it.

In truth, I can’t believe I managed to stick it out this long.  I see rheumy next week, and I don’t believe she will be pleased,  because we are almost out of options.  But I do believe she will understand.  She is a caring doctor.

To everyone experiencing depression, my thoughts are with you.

It’s hard to get up (or not) every day and fight RA, lupus, MCTD, PsA, Ank Spond, IBD…the myriad of autoimmune diseases we deal with.

Depression and/or anxiety make fighting impossible.  Depression will take away your motivation. It will take about your will.  It will tell you that you need to stay here, in this spot and not move.  Make a nest and stay in it.  Protect yourself.  Don’t risk more pain.

And some days that’s all very true, and exactly what you need to do. But depression tells you to do that every day.  And pretty soon you have no life left.

Anxiety will tell you to do the same things, but for different reasons.  Anxiety tells you that the sky will fall if you leave your safe place.  Something terrible will happen. What?  You don’t know. But it WILL happen. So you have to keep yourself safe.  And keep everyone safe that you care about.  You can’t go anywhere or do anything.

And again, you have no life.  No fight.

I experienced depression in my early 20s. There were reasons.  I worked through them, with help. And I recovered.  I learned a lot of techniques to deal with depression. And they have served me well through stressful periods in my life since then.  No one is ‘depression proof’ but there are mind sets and habits that are protective.

I do not pretend to understand how or why, but some medications bring out the depressive tendencies of my nature.  I believe it is part of me, because I don’t believe that medications can ‘create’ feelings.  But they can amplify them.  The things that I feel when I am depressed or anxious on a medication are things that I feel when I am not on these medications. It’s just that I manage these feelings. I don’t let them take control. I can keep them in perspective.

On some medications, there is no perspective.  There is no control.  There is only a slow slide into emotional turmoil that is difficult to understand, and to arrest.  Adding depression to chronic pain and disability is not a good thing.

I am lucky, because I can get rid of the depression by stopping the medication.  Methotrexate is the worst, but Humira is a close second.   The two drugs have nothing in common.  Completely different classes of medications.  Methotrexate is a DMARD, low dose chemotherapy.  Humira is a TNF blocker, a biological DMARD.  And Enbrel, a TNF blocker like Humira, did not cause depression nor any other emotional side effects.

So it’s impossible to predict.  I just have to take that chance when I start a new medication.  And when  a medication is a monthly dose, if the side effects are bad, you know they are going to last for at least a month.

Methotrexate takes a week for the worst to be over.  In two weeks I feel like myself again.

Humira takes a week to feel improvement. After two weeks I can feel myself returning.  Another week I hope, and I will feel normal again.

The next drug on the agenda is Actemra.  It is a monthly infusion.

I am not prepared to risk it right now.  I will see rheumy next Tuesday – the 11th of February.   I am going to tell her that I can no longer tolerate Humira.  And that I need a break from medication. I need a wash out period.  I need to feel like myself again for a while.  I need to regroup. I need to regather myself and get stronger.

Because I am fighting a tough battle, and I need every ounce of my emotional strength to get through the levels of pain I am experiencing every day now.  I need my mind, my emotions, within my control again.

I hope she understands.  I believe she will.  Inflammatory arthritis is breaking down my body.  I cannot allow the treatments to break down my mind.  As the saying goes, where your mind goes, the body follows.

 

11 COMMENTS

  1. I hope and pray that Actemra works for you! I’ve read many people’s comments that Humira did nothing for them. I am one of those people. I know infusions sound scary, especially because they are monthly and sticking out any possible side effects for a whole month is scarier. I’ve been on infusions (Orencia) nearly a year and have sat along side other women in the infusion center who said Actemra gave them their lives back! They didn’t have any serious side effects. My rheumy did tell me that he has observed Orencia having less side effects than Actemra, that’s why he put me on Orencia after I failed Remicade. But, as we all know, it can be sooo different for everyone. Good luck and I wish you the best. 🙂

    • Thanks Lucy! Its great to hear that you’re doing OK on infusions. And that plenty of people do well on Actemra! I’m sure I will go that route eventually. It takes several weeks to change drugs via medicare, anyway. Maybe that will be enough. We will see. Stay well 🙂

  2. Oh damn! I’m so sorry that yet another drug has turned out to be worse than not having it – if that makes sense…it’s early, MY drugs haven’t kicked yet and I’m not thinking straight yet!

    Hang in there. Fingers crossed your doctor is with you on this and you can have a break. It’s all well and good for the medicos, in many respects. They don’t have to live this stuff every day. My rheumatologist is pretty good, I have to say, and when I was fighting pain specialists in hospital who kept wanting to try yet another drug combo – I had appalling reactions to the anti-seizure drugs, and one doctor in particular wanted to keep experimenting…anything rather than prescribe an actual painkiller… – he backed me, and said HE’D do my pain management so I didn’t have to keep fighting that particular battle. He took me off MTX after five weeks of me being practically comatose five days out of the seven… And has got me this far – and I had my first Enbrel shot yesterday. I’m trying not to focus too much on it, on the hope that this will do it. I’m doing my best not to entertain a scenario where it DOESN’T. I’ve been there with depression too, at different times – and worked through it. Adding it to the mix now is a scary thought, so I keep telling myself I just have to do each day as it comes, and focus on what I DO achieve each day, and not what I don’t. Easier said than done, as I know you understand all too well.

    Wouldn’t it be nice if we could shrug out of our skins and have a holiday from RA?? Some R&R where it doesn’t hurt!! I do have those fantasies… However, right now, I’m looking at the clock and realising that if I don’t haul myself into the shower soon, and make my way downstairs, I will have a plumber bashing on the door unable to get in… Today meant getting up earlier than usually to handle that situation, so I’d best get on with it. May you find some brightness in the day today 🙂 Hugs.

    • HI Karen, your attitude is awesome – focus on what you achieve and not what you don’t. Wise words :). Sometimes I think some docs forget we are people…and view us as in interesting, or resistant set of symptoms that they just want to fix. And experiment upon. Good luck with the Enbrel – I really hope it works for you! I have heard many people say Enbrel gave them their life back. I hope it will be that way for you too!

  3. Come on, pull it together girl. You know your super human with super powers, your super Arthriticchick, she who can convey so much with a single sentence, she who can answer age old questions with a toss of her tongue, she who juggles kids, singledom, house co-ordinator, and no small dose do RA! She who can conquer any Rhuemy or pain specialist with her silver tongue and kick ass attitude. She who we all aspire to be. OMG- I just relised you don’t have time to be depressed, your too busy making sure we are all un-depressed( not sure if that is a word, but I think I will submit it to the dictionary people!!). On a more serious note, I wish I could take your pain and angst for a week to give you a well devsered break, sending you hugs and kisses, my fabulous blog friend. Hang in there we need you.Xxxxxxxxxxxxxx

    • Sarah you are the best! Sorry, I didn’t see this comment earlier – I can’t be depressed with blog buddies like you!!! Thank you so much XXXXX

      • I was on Orencia for three years with good results. Then it stopped working. I just started Humira, I have had two injections, with no results. It gives me a fierce headache that lasts 24 hours. My therapist noted that I am sadder and my depression seems worse since starting Humira. This is the only place that I have seen a discussion of that particular side effect. Thank you all. I also have intense pain and burning in the first 2-3 seconds of the injection with the pen.

        • Hi Pamela, I hear that a lot. Even though the side effect lists include ‘mood changes’ and depression and anxiety, doctors are still loathe to accept that Humira can cause these side effects. Personally, looking back, I should never have continued with Humira as long as I did. It was emotional torture. And depression can very quickly escalate, so please take care of yourself. I’m glad you have a good therapist who is noticing that you’re sadder and depressed on Humira. And please talk to your rheumatologist, let him/her know this is happening. Sometimes side effects fade over time, I hope that happens for you, and you get some benefit instead. But please be careful. If the depression gets bad, reach out for help. Best to you Xx

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