Enbrel injections .... Injecting less frequent

[AbbieJ55]

Has anyone experimented with just taking Enbrel injections every two weeks instead of every week . it's helping me but I'm scared of side effects ? ....... Low dose less side effects ?

[Matilda7]

I wish I had as I had really bad injection site reactions (ISRs) and had to transfer to Humira. When I started to have ISRs again I decided to take the injections less frequently and now only do them about every 6 weeks. The consultant was initially a bit worried but was reassured when she saw me!

I still have ISRs but nothing like as awful as with Enbrel and my joints are the best they've been for several years. Unfortunately my neurological problems have been getting worse, since starting Biologics, so all the more reason not to take more than essential. I've dropped the MTX to 5mg per week as well.

[Superfloozie in reply to Matilda7]

Can I be cheeky and ask what neurological issues? Sometimes I think I'm going nuts but sure it's the meds. Well let's hope so😳

[Matilda7 in reply to Superfloozie]

I have a peripheral neuropathy....causes my skin to be hypersensitive and have weird sensations, my feet burn, and I think it's now affecting my eyesight.

[Superfloozie in reply to Matilda7]

That's rotten, I have some similar issues and uveitis with my eyes. Hope you get some relief.

[AbbieJ55 in reply to Superfloozie]

I mean symptoms lol

[AbbieJ55 in reply to Matilda7]

Thank you I too find my eyesight is worse an more forgetful but I tend to blame any ill health an systems on the Enbrel which might not be so . I wish you well .

[AbbieJ55 in reply to Matilda7]

Thank you so much for your reply . Did you cut down gradually or bit at a time . I'm doing well tho not cured well., if you know what I mean , I've been on them a year now an noticing a difference. I get bad nerve pains in my head lasts for seconds but stops me in my tracts . The reason I want to inject less is due to weak immune an the cancer risk .

[Matilda7 in reply to AbbieJ55]

Very gradually.

[Superfloozie]

I think you know your body if you're responding well to a lower dose then it's ok. Otherwise you need to reconsider and weigh up side effects against potential joint damage. It's so tricky but you know your own body and should be able to be sensible and judge what's working.

[rawillbebeaten]

I was on Enbrel for 12 years and it was fantastic for me. Sadly it stopped being as effective and after a couple of options, flares and pain I'm on Rituximab and things have thankfully settled down. When things were going well I often forgot the weekly injection and just did it when I remembered so often it was every 1.5 or more weeks. When things weren't as good I'd almost be counting the days until the next one. So, as others have said, only you can judge your own body and reactions and what's best for you. I would ring your Rheumatology team to talk it through. Are you having regular blood tests? - I have mine done monthly and if any Inflammatory levels rise they let me know so we can see if anything needs to change.

All the very best with experimenting

Michele x

[AbbieJ55 in reply to rawillbebeaten]

Thank you so much for your reply your story with the enbrel could be mine An a great help to me . I receive blood test every 4 months but more frequent if I have a flare , which haven't had for while . I will discuss with Rhemy nurse , in the meantime going to try every two weeks . It's also reassuring you were on enbrel for 12 years without any cancer which I worry about .

Wishing you well .

Jean

[Judetheobscure]

I've been on Enbrel since 2009 with no apparent side effects other than redness and swelling on injection sites (though not always). I understand this is an allergic reaction to the preservative.

It has been the most effective of all the medications I've used in all the 40 years that I have been taking them to control RA.

I do quite often find that I've gone more than a week between injections but that is because it's working so well I have forgotten about the disease. It's maybe something you could discuss with your Rheumatologist who might suggest giving it a try then stepping up again if it's not damping down the disease sufficiently.

Enbrel has been about for quite some time now and had some very good results. To put the issue of side effects into perspective I remind myself that uncontrolled RA can do far more damage than any drug might.

As you can see from Matilda's reply, response to these meds is very much dependent on your own personal circumstances. Prior to Enbrel I had tried Humira and that had absolutely no effect on the disease at all.

Scarey, I know, when you read about possible side effects but it's made a tremendous difference to my life.

Good luck with it. Jude