Etanercept: Thank you, everyone. I’m posting my... - NRAS

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Etanercept

Mimipon profile image
6 Replies

Thank you, everyone. I’m posting my question in a different way. I started taking Etanercept from early January, and symptoms improved in the first two weeks, so I was hopeful. My CPR fell from 27 in Dec to 3.6 at Jan, end. But then, puffiness/tightness increased in my fingers & toes, and CPR worsened slightly to 4.4 at February end. I’m quite new & scared, diagnosed in late August, and only been on Leflunomide & Sulfasalazine (which I continue to take) before Etarnecept. Just mild pain at times, and bones are fine (had XRay). Question: When you started taking Etanercept, was improvement linear, or bumpy? I’m scared that the disease is getting aggressive & the drug cannot contain it & stopped working after some improvement in the first two weeks. Thanks for reading this!

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Runrig01 profile image
Runrig01

mine was definitely peaks and troughs, and I’d still get flares, albeit less severe. I take it for ankylosing spondylitis, and the first few days I went from struggling to reaching my knees to touching the floor. Then the stiffness would return for a few days till I took my next dose. I do have lots of joints affected by my AS, especially knees, feet, elbows, hips and fingers. I’ve never found Benepali helps my peripheral joints, so I take methotrexate for those. Saying that it’s generally the tendons and ligaments that are targeted in AS. I’ve just had a second operation on my foot, reconstructing tendons and fusing toe joints that all appeared after starting Benepali. I’m currently off my Benepali and MTX till the wounds heal, and my back and other joints are worsening, so I know they’re still doing their job 8yrs on.

medway-lady profile image
medway-lady

Two weeks! It takes 12/14 to get going properly. So be patient and stay active and I’d suggest you keep a diary as there will be some bumps along the way but you must give it time.RA meds are not like antibiotics so work quickly in the same way for everyone. Sorry but don’t look for issues before it has time to work.

Mimipon profile image
Mimipon in reply tomedway-lady

Thank you. Symptoms improved in two weeks, but since then, have worsened slightly, it’s been 2 months, so just worried it stopped working, As you say, I’ll wait 12/14 weeks, and keep diary!

ATBr profile image
ATBr

Agree with others to give it the 3 months. I was up and down with symptoms for about 12 weeks but am now more consistently controlled over the last 2 years with benepali 50mg and have reduced methotrexate from 20mg to 10mg in that time.

Mimipon profile image
Mimipon in reply toATBr

Thank you

themofj profile image
themofj

Hi mimipon I totally sympathise with you being scared, I to find it hard to navigate and often think the worse but all these comments are correct. Patience for 3 months is essential. Also if it doesn't work after that there will be an alternative that does! Good luck. X

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