Suffering on Humira

[SufferingOnHumira]

New to the group and hoping for insight. I have had four Humira infusions. The first three really did not help with my pain level but I wasn’t having any side effects. After my last injection (#5), I’ve had extreme shoulder pain, stiff painful neck and daily extreme headache. Are these typical symptoms of Humira? Based on some of the other posts the side effects go on for months? I think I’d rather endure the pain then put up with this sick feeling constantly! Is there light at the end of the tunnel? How long should I stick it out before asking to make a change? I was on Remicade for seven years with zero side effects and excellent results until it ran it’s course. Then I was on Actemra for seven years with zero side effects and excellent results until it ran it’s course. So here I am on my third treatment option with far less positive results 😪

[helixhelix]

Humira is a weekly injection not an infusion isn't it? So you've been on it just over a month? Which is not much time at all.

Have you discussed with your medical team, as these effects could just be that it is not yet controlling the RA so pain and headaches a result of the RA not a side effect of the drugs. However headaches should never be ignored if they are severe so do tell your team.

However only you can make the decision as to whether it's worth hanging in there for longer.

[dbestdeb in reply to helixhelix]

Humira is a once every two week injection for most. I’ve not heard of Humira infusions.

[ruth_p]

I find it odd that you were on anti tnf, changed to an IL6 inhibitor and then put back on an anti tnf. I think you need to give the Humira a little longer to work as it can take up to 12 weeks to work, like Helix said you should tell your rheumatology team about the headaches and nausea as this is not something I experienced when I was on Humira. Good luck

[SufferingOnHumira in reply to ruth_p]

Interesting. Can you explain the difference between the anti tnf and the il6 inhibitor? I guess I need to become more invested in my doctors directions. I’ve always put 100% faith in their diagnosis and prescription. Although I will say I completely ignored and refused to take the massive pain meds prescribed. Not a fan of Tramadol.

[ruth_p in reply to SufferingOnHumira]

As part of your immune system Tumour necrosis factor (tnf) is produced and causes inflammation to fight bacteria and viruses. With RA our bodies produce too much tnf which causes inflammation of the joints and therefore damage. The anti-tnf drugs limit the amount of tnf produced and help slow joint damage.

Interleukin-6 (IL-6) is one of the main causes of inflammation and joint damage in RA, as well as contributing to fatigue and anaemia. The IL-6 inhibitors stop the IL-6 protein from being produced and therefore stops the inflammation.

I was on Enbrel and then Humira for 2 1/2 and 4 1/2 years respectively. In 2010 the Enbrel stopped working as well as it had previously and I was swapped to Humira. In 2015 the Humira stopped working altogether and my CRP skyrocketed to 267 from 10. I was told by rheumatology team that your body can build up an immunity to the anti-tnf drugs which was why I was changed to Tocilizumab (RoActemra) which for me worked within 24 hours!

[SufferingOnHumira in reply to ruth_p]

Thanks

[ruth_p in reply to SufferingOnHumira]

Also I had a bad reaction to Tramadol and can’t take it at all.

[Jacey15 in reply to ruth_p]

Me too. Serotonin syndrome is not fun.

[ruth_p in reply to Jacey15]

What’s serotonin syndrome? When I took it I had all day nausea and was sick a few times too. 🤕

[Jacey15 in reply to ruth_p]

Tramadol combined with my migraine medication made me produce too much serotonin. The symptoms were increased temperature, shaking, extreme thirst not relieved by drinking because I couldn't stop peeing, confusion, diarrhea, headache, nausea and sweating buckets. It was very scary.

[ruth_p in reply to Jacey15]

That does sound awful!

[thekeys46]

Hi,

I was on Humira and had no side effects. It gave me back my quality of life. I injected every 2 weeks.

Unfortunately I have had to come off it now as I have developed breast cancer🙁. The biologics I’m on with the chemo are helping but dreading what I’ll be like when they are out of my system.

As others have said maybe it hasn’t had time yet to be most effective.

Good luck xxx

[SufferingOnHumira in reply to thekeys46]

Sorry to hear about your cancer. Wishing you rapid healing.

[SufferingOnHumira]

Yes “injection” not an infusion. This headache doesn’t allow for clear thinking.

I inject every two weeks therefore have been on the Humira for two months.

I’m happy to hear that I just need to give this more time. I’ve always been an optimist when it comes to my treatment and have always had positive results. I’ll stick it out a little longer. Thx

[Wizard12 in reply to SufferingOnHumira]

I have experienced headaches with cosentyx but didnt on humira. So I changed when I take it to just before sleep that way I miss the initial pain. Not sure if yours is constant or just around injecting time?

[dbestdeb]

I had headaches on Humira and my rheumatologist said they aren’t a side effect and perhaps I should see the eye dr. I did, and he said my eyes were inflamed probably due to allergies. He gave me two kinds of drops to use and my headaches went away.

[Nessa28]

I had horrific headaches on Humeria lasted about 12 weeks then went . Also had terrible hives and itching but that also went and I was almost pain free . Stiffness and tiredness gone . Hope it works as well for you xx