I don't know what to do! : I'm currently taking... - NRAS

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I don't know what to do!

Dreamer85 profile image
8 Replies

I'm currently taking leflunomide and naproxen. I've been on this combination for over a year.

I'm not sure how well it's working... it seemed to work well for 8 months and then I started having weekly knee flares again. My esr has been in the 60s for months.

My dermatologist wants to add in some methotrexate for psoriasis.

My rhumy nurse thinks I should consider humira.

I'm terrified of humira, there's so many horror stories about cancer, infection etc it scares me.

So as the title says... I just don't know!

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Dreamer85
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8 Replies
Barrister profile image
Barrister

I was on Humira for 14 months and it worked very well for me within 4-6 weeks. I was painfree for much of the time. The only side effect I had were headaches for the first few doses but after that nothing. I had to stop it because it wasn’t working for me any more and I changed to Enbrel. Again this worked very well for me but my rheumatologist has changed me to Benepali a biosimilar and I’m finding that it’s not as good. Whilst I was on Humira, I didn’t suffer from any infections. You will always hear the horror stories but for many of us, these drugs are real game changers.

Clemmie

I was where you are for a long time, only using Leflunomide and naproxen, then finally just the Leflunomide. I went into remission and my first doctor stopped all drugs for four years. Then I went under severe stress(mom dying, family issues) and flared badly but the Leflunomide alone wasn't able to control it. I was then put on prednisone 20 mgs too. I was like you, scared to death of Humira and the other biologics from what I heard and read. I put it off for five years. My new Rheumy wanted me on, but he said he wasn't going to push me, if I wasn't ready then he'd wait until I was. He was clear every visit about the progression of the disease. Finally I had to admit to myself that things were getting much worse.

But I still needed convincing and support. I sat down with my pulmonary doctor, cardiologist, and Humira Nurse ambassador(who is outstanding) and asked them all my questions and told them my fears. But the one that helped me most was when my pulmonary doctor explained about the chance of cancer. She (and my Rheumy had already told me this part previously)said that having RA itself increases your risk above the normal population. And yes, the biologics also can increase your risk. But it's not some big giant leap as it may sound. It's still a fractional risk. Ultimately no one can guarantee it won't happen. But continuously having uncontrolled RA puts you in a dangerous category. After all the discussions, I decided to take the Humira(I was ready, but cried in the doctors office and was so nervous I shook like a leaf-but he was so understanding that after the shot he gave me a hug). It did make a difference, and I'm still a little nervous. I've been on it since November of 2017. I am very careful regarding being around sick people, especially children and and have learned to speak up, even ask have you been sick, if friends try to hug me.

So just make sure that you are ready and well informed whatever you decide. This site and all the people on here is the best place to be for questions and answers, and most of all, support😊

Dreamer85 profile image
Dreamer85 in reply to

Thankyou so much, that's really helpful! X

in reply to Dreamer85

Great! Keep us informed!😁

Gigi71 profile image
Gigi71

I'v been on Humira for over 8 years, it's been a wonder drug for me. I have erosive RA and its slowed joint damage down. I don't get anymore infections than anyone else, less colds. On occasions when I do get an infection it can be a lot worse though. We are all different, I have quite a few medical problems and take a lot of medication. I am unable to tolerate opiate type drugs. I also try to live a healthy lifestyle, diet, exercise, the latter is limited as I have osteo in my back. Good luck.

TerrilouiseS profile image
TerrilouiseS

I have been on Humira for 14 months now and it has changed my life. Previously on Sulpha and then MTX which hadn’t worked at all.

Literally worked within hours. Had a sinus infection within four weeks of starting Umira, no other infections since. In fact I very rarely get ill now. When I do it feels pretty bad but I don’t know if tas because of th disease or the drug. It’s a wonder drug. I was also told the risk of cancer has been disproven?

It did make my skin dry and irritable for a while but that calmed down.

I highly recommend, my PsA was so bad I would’ve taken any risk to have a drug that gave me my life back.

Best of luck x

Dreamer85 profile image
Dreamer85 in reply to TerrilouiseS

Thankyou so much, do you ever flare now? X

Magymay profile image
Magymay

Hi there ,it may help your psoriasis a bit although you can still flare with it ,I get side effects and am a bit fed up with it but they always tell you to stick with it ,They won't give me the time of day if I stop,Don't forget it effects everyone different so it's worth a try ,good luck 😊

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