NRAS

Hello

Hi Everyone,

I'm a newbie, just signed up today and wanted to say hello :-)

A bit about me, I'm 31 years old and have been living with RA since 2007, time has flown as it doesn't seem that long!

Today has been a fairly postive day, I had an appointment with a rheumatology nurse to discuss the options of biologics. I've been on sulfasalazine and hydroxchloroquine for quite some time now, but it's not as effective anymore.

I was wondering if anyone has had experience with the biologic Etanercept? This is what I will potentially be trying, but I have some trepidation due to potential side effects.

Any advice would be greatly appreciated.

Thanks.

15 Replies
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Hello tabu96, just want to welcome you to this brilliant site. Some other people will talk about biologicals alas I am not on them. Just wanted to say hello.

From carolsos x

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Hi Carolsos and thanks for the welcome :-)

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Hi tabu and welcome to the forum. I'm sure there will be lots of people who can answer your question. It is a very caring and supportive place.

Beverley (NRAS Helpline)

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Hi Beverley, thank you :-)

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Hello and welcome to the forum. I can't give you advice about Etanercept, I am on CIMZIA. Another biologic which like all medicines can put a real frightener in your brain if you read about the possible side effects. I was diagnosed in 2009 and am in remission since 2014. I'm not sure if that would be the case without the biologic. CIMZIA enabled me to get back control and be the boss of my condition. My view has always been, don't think about the side effects until they actually appear. If they do and the benefit of the drug(less pain, more mobility etc.) is greater than the symptoms of the side effects then I am very happy to put up with them. Give it a chance and welcome it. I hope it will work for you and improve your life. All the best.

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Hi stbernhard, thanks for replying. I had a bad experience with methotrexate in the past, it worked well for controlling my condition but unfortunately the side effects were too much. That's sound advice, about the benefit of the drug being greater than the symptoms of the side effects, I think I scared myself a bit by googling about Etanercept and had a moment of panic. Thanks for the advice and great news that you've been in remission since 2014, long may it continue.

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Hi Tabu! Just wanted to say Hi. My experience with biologics is not so good--I'm alkergic to All of them! The last one was given by infusion after my entire leg swelked up after injecting Enbrel. I had an alkergic reaction right in front of my rheumatologist! He quickly injected me with bendryl and said no more of that! I was very grateful that he stopped by the infusion room to check on me!

Right now I am on plaquinil and mtx. Both seem to be working well.

Take care,

Dani

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Hi Dani, thank you for sharing your experience. Glad to hear the mtx and plaquinil are working for you. I may give mtx another try if biologics don't work for me.

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Hi Tabu96. I'm so sorry about your condition. You can try this link to find out more about etanercept.

drugs.com/comments/etanerce...

Hope you get well soon.

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Hi Cate24, thank you for the link. It's a wonderful resource and has provided great insight into people's experience with the drug. I'm feeling a lot less apprehensive about giving it a try.

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Hi tabu96. Don't mention it. So glad you can get what you want through the link. Now you can discuss it with your rheumy. If you don't mind you can share me about your experience with etanercept after you get it. Thank you

Have you ever used Imuran? It's immunosuppressive drug. It has been in use for many years and has helped many people with RA, IBD, lupus and other inflammatory diseases. Maybe you can discuss about Imuran before taking etanercept with your rheumy.

I'm also patient with RA and Adult Onset Still's disease with condition unresponsive and allergic to many drugs.

Cate

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Hi Cate, I will definitely share my experience with etanercept once I've started it.

I've not used Imuran before, only mtx and sulfasalazine. I have been stable on the latter for a while, however I think I could have benefited from exploring different medications.

I had asked my rheumy about biologics about 8 years ago and I was immediately shutdown because apparently I wouldn't qualify for it due to the arthritis being predominantly in my feet. Once I was stable on sulfasalazine, the rheumy never suggested any other medication. I wish I had been more persistent, sadly my feet and ankle have suffered.

I had my ankle replaced this year due to joint damaged caused by arthritis. The surgeon said he was quite shocked with how badly the ankle had deteriorated. He previously operated on my feet, I've had fusion surgery on both previously. The surgeon was also surprised that I was not on biologic medication, he suggested I get referred to another rheumy for a second opinion. The new rheumy has been wonderful and is pursing the biologic route for me, so fingers-crossed it works out. I will keep you posted.

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Hi Tabu96. Thank so much for your sharing. What side effects did you feel when taking mtx and sulfasalazine? How many doses did you use?

What kind of biologic did you use? How long did you use biologic till you got the benefit? Thank you.

Cate

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Hi Tabu. I was on etanercept for five years with excellent results. I was also on sulfasalazine but like you it had stopped being effective. Etanercept was a lifesaver for me and it enabled me to live a virtually normal life for five years. Unfortunately, it stopped working for me but only after 5 years. The side effects for me were minor. eg a few headaches and bit of dizziness initially and also bit of stinging round the injection site sometimes. These things were nothing to worry about and were short lived. Many people will tell you on this site that its trial and error in the quest to find something that works for you. I am of the opinion that its worth giving it a try. If it doesn't work for you, at least you can say you've tried and move on to something else. Good luck in your quest.

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Hi Biofreak, thank you for replying. I'm with you on it's worth giving it a try. I saw details on side effects and panicked a bit. Advice from this forum has been so helpful with providing perspective. It's definitely worth giving it a go - nothing ventured, nothing gained. Thanks you for sharing your experience, much appreciated.

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