Simponi and regular headaches?: Hello all, I'm Huguen... - NRAS

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Simponi and regular headaches?

Huguen profile image
5 Replies

Hello all,

I'm Huguen, the new kid here (well I'm 43). I'll introduce myself....

After debilitating hip and lower back pain I was diagnosed with Ankylosing Spondylitis in 2001. In about 2013 I was prescribed Humira, which was very harsh on my immune system, and later swapped onto Simponi which I think amazing.

I have been doing physio for 20 ish years, and most people I meet don't know anything of my hidden condition. I have a little fusion in lower vertebrae and pelvic bones but with my AS suppressed, I try to make the most of life by cold swimming, canoeing, bodyboarding, hiking, camping etc and generally love to be in the sea.

I'm interested in anwsering/advising anyone new with the disease, and also swapping experiences to perhaps learn something new myself.

My main question to any Simponi users out there today is;

Do you suffer regular headaches, and think they are related to your injections?

My experience is that in 7 years of simponi use, the last 2 years I started noticing slightly nauseous headaches usually just a few days before I'm due to inject. They almost always need paracetemol to shift them, and I wake up feeling fine the next day. Ordinarily I never used to suffer headaches (unless over-indulgent!).

Any experiences I would be glad to hear them!

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Huguen
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5 Replies
springcross profile image
springcross

Hi Huguen and welcome to the forum. I don't have any knowledge of Simponi but I'm sure someone will be along who will, sooner or later.

Huguen profile image
Huguen in reply to springcross

Thanks for the welcome :)

skinnycappuccino profile image
skinnycappuccino

Hello Huguen,

I was on Simponi from 2012 to 2018 and I have never experienced any headaches. After a few years, I developed a rash/eczema and my rheumy thought it might be related - that was the only side effect I ever had from it - it was my first biologic and I loved it 😅❤️ All the best, Christine xx

Huguen profile image
Huguen in reply to skinnycappuccino

Hi Christine, thanks for commenting on the headaches. It will be good to hear how common they are amongst people.

I hope the Kevzara carries on working well for you. My relatives are from the Romandy area, so I'm no stranger to your beautiful country of residence :)

skinnycappuccino profile image
skinnycappuccino in reply to Huguen

Thank you, yes Kevzara is fantastic 🙏!! I'm tapering my Pred (had to go back on it in summer 🙄) and even though I am tapering fast, I'm not too uncomfortable so it really must be working very well!!

Oh that's cool, so do you visit your relatives often then 😊? I must admit I haven't been in the French-speaking part much but I am planning to go to Lausanne soon to visit the Federal Court 😊 xx

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