Adalimumab & Fatigue

[hope-always316]

I started on Amgevita (Adalimumab) in mid-December after 6 wobbly years on Methotrexate (15mg injection). Disease activity was increasing but other drugs tried made me unwell.

Steroids worked well but not sustainable. I eventually agreed to get onto biologics with some trepidation.

I’ve had 4 doses (week 8) and I am horrendously fatigued. Methotrexate famously gives me the ‘hang over’ the day after but since starting Amgevita I’m absolutely wiped out. I can’t get enough sleep. I work full time at home, have 2 kids and a reasonably busy community life, but I’ve never felt this utterly sleepy all the time before.

At one point I wondered if it’s sleep apnoea (I’m a bad snorer) but I monitor my breathing rate at night and it’s normal.

I am able to function normally with work, studies etc. I don’t feel depressed but I have literally an hour or two in the morning where I feel fine, then I hit a kind of Wall of Fatigue, my eyesight gets fuzzy and I have to blink a lot to focus, I have the will and desire to do things but spend the rest of my day dragging myself around, napping in bursts and wishing for bedtime. It’s like a heavy blanket has been wrapped round me, I can’t describe it any other way.

It doesn’t feel like normal tiredness.

Is this just an adjustment period?

My slight frustration is my joints feel the same. I’m not aware of a significant improvement although I’ve been too exhausted to go walking or to the gym to ‘test’ my joints!

Has anyone any experience to share on adjusting to this drug? (Assuming that’s my cause!)

[KittyJ]

Fatigue is a very common problem with RA, I’m sorry but the only thing I can suggest is taking it a bit easier whilst you’re giving your new meds a chance to work, you have a busy life and whilst your RA isn’t under control you need to rest as much as you can. Here’s a link to NRAS publication on fatigue, I hope you find it is helpful.

nras.org.uk/product/fatigue...

[hope-always316 in reply to KittyJ]

I’m really bad with the advice to take it easy I fully admit Part of me still wants to fight the disease symptoms because I was never diagnosed properly with RA but an “unspecified inflammatory arthritis” being treated as if it’s RA. But several years in I’m not sure it matters anymore. I find myself in the ‘prime’ of my life and desperately wanting to hold back the negative impacts. But this fatigue has caught up with me. I’m very lucky to work from home so, for now, power naps will have to see me through.

[RAexperiences]

Boy am I glad you posted this as I feel exactly the same way…Obviously I don’t want you to experience these struggles, it is just that it is helping articulate how I feel which is identical. Including the fuzzy eyesight which I had never noticed before (I work at a computer all day long). I take it the drug and can barely stay awake and have even had to sneak away and “Power Nap” during work hours. I’m slurring half the time I’m so exhausted. I also have buzzing in my ears (new) and a constant runny nose and feeling of congestion in my head. I am also on maximim dose methotrexate. (RA). Think I have been on this around 2 months now. Gaining a lot of midrift weight too which happens to me on biologics. Probably too early to know how it’s working. I’m anxious to see if this feeling lifts. I had the same crippling fatigue with another biologic and it did lift eventually…don’t know how u do it eith two children! Best wishes

[hope-always316 in reply to RAexperiences]

I feel your pain! And you reminded me the tinnitus definitely ramped up considerably when I started on the biological .. but I also get tinnntius if I’m super tired.. I feel stuck in a fatigue loop and it’s very frustrating. I will call thr rheumy team but suspect they will tell me to persevere to the 12 week mark at least and I’m due my next bloods then too - so it will be interesting to get a more objective view on whether it’s helped reduce inflammation or I’m just imagining it’s not!

[Blackberrywine]

I had the same problem with this drug, plus other issues. It was definately the drug and not the original disease. I persevered for just over three months than gave up. I wasn't having much of a life. Things might improve for you, it does for some people. If it doesn't don't tolerate it for too long. Can't imagine how you come with children on top!

[oldtimer2]

I haven't had any problems with fatigue on adalumimab, quite the reverse. After the injection I start feeling better, more energetic, less painful and it's easier to get moving. Towards the end of the two weeks, I'm feeling tired aching and having to use my support compression gloves again.

It sounds as if it might not be working for you. You might need a different type of biological treatment - have a look at the treatment pages on the NRAS website and have a discussion with your rheumy team?

[Lolabridge]

I tried Adalimumab this time last year and it didn’t work for me. Like you I had fatigue, my hands became claws and it did little for my joint pain.

It sounds as though it’s not working for you either. So I suggest you contact your Rheumatologist and ask for a review of your medication.

Good luck.

[helixhelix]

Didn’t work for me either. Plodded through 6 months with a couple of steroid shots to give it time to work. It didn’t.

[J1707-]

I’m in this club too. I only lasted 8 weeks . ( stopped a week before Christmas) Tinnitus is bad and I think here to stay . I had muscle weakness really bad and peripheral neuropathy really ramped up . Another TnF caused similar problems. The list could go on , TNF drugs are not for me.

[TheBoys]

hello there. I just came across your post - and was interested to see how are you doing now.

[Aporiac]

I also just came across your post and would be interested to know whether things have improved. I'm also terribly fatigued 90% of the time, and seem to need inordinate amounts of sleep, which don't refresh! I've been taking Adalimumab (with Methotrexate) for around 6 months. I'm familiar with the fatigue associated with RA and the depressive effects of Methotrexate (which is also tiring/slowing), but this is something else (like being run over by a train!)

[hope-always316 in reply to Aporiac]

I did come off it under consultant say-so and honestly in no rush to get back on it! I have definitely seen a major improvement in my fatigue level. My consultant said she would be surprised the biologic was causing fatigue but all I can say is it hugely affected me. I did 12 weeks (6 doses) and within a week or so of missing a dose I felt a lot brighter. To complete my ‘proof’ I would need to go back on it so my plan is to call the consultant, and seek advice on whether to go back on Adalimumab or - as she said - try something else. My elbows have definitely been getting sorer in the last few weeks and general stiffness up a little bit but not dramatically. My biggest concern now is fatigue - but balancing that with protecting my long term joint healthy is the tricky bit as I’m ‘only’ 46 and need my joints working well for a good while yet!

[Aporiac in reply to hope-always316]

That's brilliant - thank you! I'll discuss alternatives with my rheumatologist at my next review. I take your point about balancing the symptoms of RA and the unwanted effects of treatments - it can be tricky! Good luck with you own journey managing your condition.