Back on Enbrel: Just to say I am back on Enbrel after... - NRAS

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Back on Enbrel

juliea793
juliea793

Just to say I am back on Enbrel after discussion with Consultant who thinks that being on the drug for 15 years it was not the cause of my Myocarditis/Heart Failure. All newer Biologics carry same risks.

My full flare up was more damaging. So Monday late afternoon I injected 25mgs and 24hours later I have lost that grey feeling and more comfortable..I had been off Enbrel for almost 3 months as a precaution . I have always respected the drug but hope my GPs as well as my excellent Rheumatology team after nearly losing my life will continue with their good care .

Its been a hard decision to make going back on this drug but when you feel so ill with a whole body flare up you have to make bold decisions and keep fingers x

10 Replies
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Hi Julia, big decision for you and can’t have been easy. As long as you are supported and continued care is excellent. Fingers crossed you will start feeling much better. xxxx

That sounds good news despite the inevitable fear that goes with it!

Hope all just improves now.

I bet it was a difficult decision for you to make. I've also had one or two difficult decisions to make about restarting meds. It's certainly no fun is it!

I had a heart attack about 14 years ago so can relate to how you are feeling. The docs were a bit baffled what caused it but my RA was ruled out as it was said to be inactive at the time. I suspect it was due to anti-inflammatories but there's no way to prove it. Inflammation from a major flare-up can be very damaging to our main organs. I had a nasty prolonged flare a few years back. It left my heart alone but attacked my lungs instead leaving me with a serious lung condition. Can only keep my fingers crossed regarding that!

Good luck and hope things continue to improve for you.

juliea793
juliea793 in reply to wishbone

Thank you. Due my 2nd shot tomorrow then hopefully will get back to 25mgs weekly which was holding flare ups at bay.

Just awaiting an mri result which hoping shows no real problems.

wishbone
wishbone in reply to juliea793

Hope the mri goes ok.

juliea793
juliea793 in reply to wishbone

Hi

In answer to your question I was not in a flare when it happened. I was quite controlled. I did have a chest infection and had refrained from doses while taking antibiotics. I had the incident after 6 days of antibiotics. They thought initially that had a blood clot in lung as had just returned from Amsterdam flight.

But heart enzymes raised and totally breathless. Heart Failure. So treated in hospital for 8 days.

So the recent flare-up has been due to being off drug. Hence was told this would do more damage.

An angiogram showed when all fluid drained that my heart was not in a bad condition and no Arteries blocked. So hence the Mri to try and clarify as to what happened or confirm myocardis.

wishbone
wishbone in reply to juliea793

Best explain why my post was deleted.... I had second thoughts whether it was appropriate to ask those questions not long after having your heart problem. I thought you probably hadn't read my post so decided to delete it. Seems like I jumped the gun!..yet again! :-O :-) Apologies and thanks for your interesting reply.

My angiogram also failed to show any obvious issues, which did come as a relief. Though I had a relatively mild heart attack so not as serious as what happened to you.

You do indeed, I've got my fingers crossed and agree as I'd still have taken the Omeprazole as the risk of a problem was so very rare. Let us know how you are .x

Hugs to feel good!

Hi Julie, just wondering how you are getting on after going back on enbrel?

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