Rheumatoid arthritis and Xeljanz after seven weeks

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It has been 7 weeks on Xeljanz now, with a break of 5 days thanks to a brush with mild pneumonia.  Long enough so that I have felt some benefit, in both pain and in energy levels and I’m sure it’s not coincidence.  I have days with considerably less fatigue, especially combined with being able to sleep more than four hours a night, thanks to Valium.

Xeljanz dose

 

I have been taking 5mg morning and night.  So 10mg daily.

How long does it take Xeljanz to take effect?

 

For me, at two weeks I suddenly started to feel better. And it was sudden.  I woke up, and as usual lumbar spine pain was the first thing I was aware of.  I did my gentle stretches, and prepared to sit up and get out of bed, and I noted stiffness in my joints.  I usually don’t notice stiffness, because pain is too overwhelming.  If I’m aware of stiffness, pain is way down.

Mornings are the worst part of the day for me. Mornings are agony.  When my feet hit the ground that morning, I didn’t feel the usual shock of pain run right up through my body.  I stood, and I was able to stand without support.  I took a step and another, and I didn’t hobble.  There was pain in my feet, knees and hips, but not crippling pain.  Literally overnight I experienced about a 30% drop in pain, which is unheard of for me.   And the next three days were the same.

And then disaster struck.  A head cold which spread to my chest with lightning speed and became pneumonia.  I immediately got antibiotics but I was still down for the count for the next five days.  And I had to stop the Xeljanz.

If I needed confirmation that Xeljanz was helping, stopping for five days was enough to provide it.  The deep aches became knives and twisting screwdrivers, and all my joints were on fire again.

I restarted Xeljanz, and just over a week later, improvement returned.  Knives back to deep aches.  Now don’t get me wrong, the deep aches are still bad pain, just duller. Having your lower back, shoulders, knees, feet, hands and hips ache constantly is not fun.  Walking for more than 100 metres is still not possible.  I am never pain free, but I never expect to be. The damage to several of my joints means that even if the inflammation were completely controlled right now, never to return, I would still have constant pain from damage done.  Shoulders, hips, lower spine particularly.  And the nerve pain in my left arm and hands.

I still get regular knock down days. More of those than not, if I’m honest, I have had those since day one.  Days when most joints are inflamed, and painful, and feel like someone is twisting screwdrivers inside all of them at once and prising them apart.  When the pain is so intense that I can’t leave the house, and can barely leave the couch to get to the bathroom.  I’m still having about four of those a week now.  But that used to be my every day, so that’s a pretty big improvement.  I’m having about three milder, deep ache days as well. Days with energy.  Days where I can get out of the house, do a thing in the morning, and then maybe even do ANOTHER thing in the afternoon.  Holy crap!

So now that it has been almost seven weeks, total, I would call it a 30-40% improvement in quality of life on the whole.  Enough to give me a whole big fat whack of hope!  Not enough to stop me from moving forward with my wheelchair purchase.  And not enough for me to do the gym classes I want to do. Not enough to go on photography trips. But enough for me to feel a lot more positive about the future.  About life, about what’s possible.  It’s a whole lot easier to have a positive attitude when you’re in a bit less pain.

And this is by far the best response I’ve had to ANY medication or treatment, apart from prednisone.

The best ‘hard’ evidence I can offer is that for the last two weeks I have taken a lower dose of oxycodone on three and four days respectively.  10mg of Targin in the morning rather than 20mg (I still take 20mg at night, pain is always worse at night).  I am also averaging three doses of 10mg immediate release oxycodone per day, rather than four.  I’m very happy about that.  I don’t enjoy narcotics.

Of course tapering prednisone is more important than reducing my opioid dose, as far as I (and my cardiologist) are concerned.  I am currently at 11mgs of prednisone, so life will get very interesting when I get below 10mg in a few weeks.  Perhaps Xeljanz will allow me to succeed where I have always fallen apart before.  I can only hope.

And now for the not so good news.  The side effects of Xeljanz.  Some of the below might be too much information, proceed at your own risk.

 

What are the side effects of Xeljanz?

 

To begin with the side effects of Xeljanz were horrible and they hit hard.

Infection.  Infection is the major risk with Xeljanz, as it is with all biologicals. Some, like Xeljanz and Actemra are even more notorious.  It’s not a co-incidence that it only too just over two weeks for me to be hit by a chest infection and head cold.  It may have been influenza, it was definitely mild pneumonia and it was a reminder not to be complacent, as I often am.  Having said that, I was only down for five days, which is a very quick recovery, admittedly with the strongest oral antibiotics available.

Gastrointestinal:  I had severe diarrhea and the painful stomach cramps that go with it for the first few weeks. To the extent that I didn’t leave the house for needing to be close to the bathroom.  And if I HAD to leave the house I only went places that I knew exactly where the bathroom was.  Sorry to be graphic, but I have a friend who has Crohn’s disease, and it was a window on her world.  I have IBS (irritable Bowell Syndrome) but this was far worse.  It only took four weeks to improve radically however, and it comes and goes now.

Nausea:  I have a lot of nausea, but it is subsiding.  Nausea is so normal for me, it’s hard to be sure how much I can blame on Xeljanz, but there was a definite increase when I started, and restarted Xeljanz.

4 COMMENTS

    • If it is to be your next treatment, Rick, I sincerely hope you have a positive experience with it as well. Just hang in through the early weeks, it will be worth it! Best to you 🙂

  1. Hi @admin! I know this post is a lil dated, but I had to take a chance you might get it?! And am REALLY interested IF U are still taking Xeljanz and benefitting? Thank you so much for your info! I too have severe Seropositive RA in EVERY joint, and have the constant pain, deep aches, and knives you so accurately described. Mom has asked me to describe, and BROKEN is closest I can explain to her? Feels like I have been bounced off the pavement. I failed Actemra spectacularly! Lol! Believe it has CAUSED the beginning of CHF! Did not have BP issues before, :-/ And am on 2 diff BP medications now! Grrrr! Dr says it WAS NOT the Actemra? It’s just “my RD progressing THAT rapidly” (I don’t agree) and Mom likes to blame EVERYTHING on prednisone (15mg daily) which YES terrifies me, and like you, would LOVE to be able to wean off of it ASAP! I only recently had to switch from hydrocodone to Oxycodone as I developed a tolerance, and take 4-5 10mg of those per day 🙁 and I HATE them!!! Was already doing worse than ever when I started Xeljanz XR, tomorrow is 2 full weeks?! But since starting it, pain, swelling, fatigue, and FEVER especially have all INCREASED exponentially! Came across your article trying to find WHEN is best time of day to take it?? Since I only take it once a day?! Had been taking it w/morning meds, but I was awake, in pain, literally ALL night last night! Didn’t sleep until after I made my 830am phone call, and had taken “morning meds” and slept on and off from 9am to 330pm today, and I actually feel a LIL better?? 🤔SO scared to get my hopes up? But I TOTALLY understand and sympathize with you on EVERY point you made cuz I’m there too! Unable to walk to mailbox anymore, go to store, VERY difficult to shower, (wash hair w/arms above head) and seemingly just getting worse! Any additional info you could give me about Xeljanz would be GREATLY appreciated!! Hope this finds you having more good days than bad? Wishing U restful sleep and pain free, energy filled days! 😃

    Sincerely,
    Out of Hope!

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