Enbrel... My miracle: I can't explain how excited I am... - NRAS

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Enbrel... My miracle

Rsfelty profile image
26 Replies

I can't explain how excited I am... I just had my second enbrel dose and my second very positive reaction. Last week following my injection, I scrubbed grout. That's right, on my hands and knees scrubbing grout. Along with a million other chores I haven't been well enough to do in years... Sadly I think I overdid it and I felt pretty crappy by day 4 after my injection... Here I am only a few hours after my shot and I caught myself skipping around the house. I am so excited and terrified it won't keep working... My one question is does this medicine need to build up in my system? I'm wondering why my good response was so short lived last time. Or maybe I need injections twice a week?

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Rsfelty profile image
Rsfelty
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26 Replies
popsmith1874 profile image
popsmith1874

Hi well I hope your keep on winning your fight against this horrible disease , I've been given my first shot of Benepali today it's just the same as Embrel and I hope I'm the same as you because since 2014 since I got this horrible disease RA and OA nothings worked so here's hoping

Rsfelty profile image
Rsfelty in reply to popsmith1874

I really hope it works for you! Please keep us updated.

Matalow profile image
Matalow

Great isn't it! Just take it easy ( easier said then done) .Pace yourself but enjoy the feeling of feeling better.

Regards Mike

Alderess profile image
Alderess

Hi. I'm so glad to hear Enbrel is working for you. It was brilliant for me for a long time. In fact it was me not managing to self inject (cowardly person) that meant I had to change to something else, so there's hope it will work for you forever! I only ever had a weekly dose and after the third week it seemed to last until the next jab. I was on Methotrexate with it.

Rsfelty profile image
Rsfelty in reply to Alderess

That's really helpful! So hopefully each week it lasts a little longer!! I don't self inject if it makes you feel better! I'm a chicken!

wiliby profile image
wiliby

Wow quick response!! Delighted for you, enbrel was my miracle but it was gradual, 6 weeks before I was skipping around and by 4 months my DAS score 1.35 😁

Wonderful, enjoy!

Rsfelty profile image
Rsfelty in reply to wiliby

Woo hoo! That's awesome! Are you still on it?

wiliby profile image
wiliby in reply to Rsfelty

Yes, 5 years now, 3 years amazing almost pain free, I was taken off methotrexate which may have resulted in loss of effect, still much better than I was before enbrel! The most amazing feeling to feel better 😁 just to add, even got to the gym after work and run around after kids!!

Ahhh miracles.....x

Ps. I'm not meaning to brag but wanted you to have even more hope, my fatigue disappeared as well!

Matilda7 profile image
Matilda7

Try taking it a bit easy this week and see if the benefits last longer.....just as an experiment....

Hi! I've been on enbrel for the last 15 years and this treatment has worked amazingly for me!! The first few years after I was diagnosed at 22, there was all different kinds of tablets that had no real effect on my condition. My consultant then got the go-ahead to put me on enbrel. Before I couldn't walk very far of do much of anything without being in really bad pain. After the very first week I was able to do so much just as you been able to!!! It was a miracle!!! It does need time for your system to adjust to your new treatment but all I'd say is you will find your limits of what you can do and can't do. I manage to be n independent single mum and am finally back to a few hours work. The difference even after a short time was shocking! Don't push yourself too much and try and keep a good exercise routine going. I'm not saying pumping iron in the gym but walking a bit and even a little dance around the front room!!! Staying still for too long always makes me feel stiff so keep stretching arms and legs every 5 to 10 mins!! In time you will know what you can do and can't do. Just don't dwell on the things you still can't do. Focus on each day and the things you can achieve now. Good luck!! X

Rsfelty profile image
Rsfelty in reply to

Thank you so much! It's great to hear it still works for you! Kudos to you being a single mom and going back to work! That's amazing.

28maggie11 profile image
28maggie11

Hi I too have started embrel third jag. Felt better aftrr first but hopefully foot and shoulders will improve

Grandimose profile image
Grandimose

So glad to hear the new you now you are on Embrel. I have been injecting for the last 6 months and it has made such a difference for me. Just remember though you still have RA - so little and often for cleaning and exercise - you will still have the fatigue!!

Rsfelty profile image
Rsfelty in reply to Grandimose

I wondered about the fatigue! Good to know. Thank you!

beeckey profile image
beeckey

Great to hear Embrel is working so well for you it gives hope to other people who are waiting to start it.Sadly it did not work for me but as we know we are all different keep well x

Rsfelty profile image
Rsfelty in reply to beeckey

I hope you find something great for you!

Cagsie profile image
Cagsie

It has worked well for me for the last 8 years, I too feel I need it more often than every week. I still have problems with my hands and feet but I eyed to discuss this with my Rheumy. I do feel she has heard it all before and doesn't really listen. In saying that Enbrel has been great, good luck for the future xx

Ranjmcl profile image
Ranjmcl

Week 6 of Embrel. And yes it's still working. The thing is it's a bit like a roller coaster. One day I'm fine and another not so much. But a friend of mine said it took about 6 months to feel safe enough to do lots of things and a further 6-12 months to reverse the problems. However. I feel so much better with it and happy to inject myself. The pain of the injection lasts seconds. Well worth it!!!!

dapper profile image
dapper

Ive been on it a while now ,and yes really feeling the benefits ,but yes still get odd days feeling grotty ,achy ,sore ,but generally the best thing ever ,

rawillbebeaten profile image
rawillbebeaten

Hi, Enbrel was a miracle for me too, worked immediately with pain and severe stiffness in all joint alleviated and it remained so fantastic, mostly, for 15 years. I started on it in the early years of the drug - I had to mix a power with a solution and inject 25mg twice a week. After a while it changed to 50mg weekly. Sadly it stopped being as effective and another drug began to effect my kidneys. I have had 1 Rituzimab Infusion back in Feb and should be having another course of 2 soon. Been a difficult year with RA but I feel that it's back on track now.

Hope things continue to be fantastic for you - I had other drugs in the mix as well, and still do have almost all I can have, but Enbrel was the miracle.

Take it easy and pace yourself, that will help

Michele

Denise64 profile image
Denise64

Hi

Wow ! I'm totally made you for you I really am.

Just enjoy the new you , go on holiday and dance on the beach.

Nice to hear something works so well for someone . Xx hugs

Hobbits profile image
Hobbits

Glad to hear your drug is working good for you. I have been on Enbrel for some time. Enbrel is prescribed once a week injection for RA. It's other conditions that may have two injections in a week like PSa. If your regular dose of Enbrel isn't enough then they generally add something else, like methotrexate or prednisone. However since you haven't been in the drug very long it likely has not reached its full potential yet. I know how you feel...going from not being able to do simple cleaning....to scrubbing! Haha I know the pleasure when you can actually clean properly! Someone mentioned about still having fatigue, this can be true for some and not for others, sometimes the Enbrel really helps fatigue for some, sadly not for everyone.

I can still feel some disease activity on Enbrel, Some days I am perfectly fine, other days I have some burning in certain parts, and fatigue is bad, and I know I'm in a flare which is subdued by the drug. But overall the drug is doing a good job at controlling the disease. My doctor is monitoring these breakthrough flares - some is acceptable, but if it's become more constant then a low dose prednisone 'booster' or a change of medication will happen. I don't want to change medications because every time I start a new Med, I suffer from extreme hairloss. I wish you all the luck, so happy to read when someone gets their independence back!!!! ☺️

Marykate7 profile image
Marykate7

I don't know but please don't get carried away with chores. It's easy I know but be careful

Scrappie54 profile image
Scrappie54

You have over done yourself since you just started Embrel. Take it easy for a few weeks till it get into your system. Yes you feel great so you want to get things done that has been put off for so long. Give it time and things will work out. I have been on Embrel for six years know and freel musch better, I too at first over done it. Leearned to take easy and not overdoing it. Somethings still a chore but can do it

pheonix2 profile image
pheonix2

Hi

I was a guinea pig for Enbrel in 2000. I have been on it ever since. I went from lying around not able to even walk more than a couple of steps, or make myself a drink to getting out and about , baking running for Councillor. It is great. Take it easy even though it's great, let it get into your system and try not to over do it as much as you can. Even after 16 years it still works, it does have its side effects which you will have told about. The good out weighs the bad. Good luck and good life.

pheonix2 profile image
pheonix2

I started on Enbrel twice a week but as the Enbrel was changed and became more efficient I only inject once a week and it lasts up to the next injection unless I have a fall or a flare-up. Hope this helps, good luck again.

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