What's after Enbrel: As you will see from last post... - NRAS


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What's after Enbrel

juliea793 profile image

As you will see from last post have had heart scare and was not allowed to restart Enbrel incase it was cause. They think it was Myocardis but awaiting result of cardiac mri which was done last week. Had one depro a month ago with some effect but now in full flare.

My question is! I see Ra Consultant Monday and hoping to be started on new anti tnf. Has anybody else had similar experience. I am worried the inflammation will not help my heart long term. My flare now is in so many joints.

Any remarks gratefully received. Ty.

5 Replies

This is a really complex question. There are many causes of myocarditis, and many possible consequences. When you say "Enbrel was stopped in case it was the cause" are you meaning that they think the myocarditis was a drug reaction, or that having a lowered your immune system made you more vulnerable to an infection? Both are possible, and that could change what is proposed. So you are in an individual position where someone else's experience may not be relevant at all.

So i think you have to wait to hear what the consultant advises. Just think of the questions you would want answered, so that you are prepared a bit. For example things like "what are the risks of doing X amd of not doing X". What precautions should I be taking, should I restart exercise - stuff like that. Good luck.

juliea793 profile image
juliea793 in reply to helixhelix

I had been on drug 14 years. It worked from day 1. A number of causes could have caused my problem. But to take risk with Enbrel again they say could be fatal next time. But was told from Rhuemy dept plenty drugs out there similar.

helixhelix profile image
helixhelix in reply to juliea793

Yes there are loads of other biologics, both other anti-tnfs and other types of biologic. Hope yiu have a good appointment

Have a look at the treatment pages on the NRAS website before your appointment so that you have some idea of the options that they may be offering you. It sounds as if they think it is possibly a reaction to the Embrel specifically and not to infection?

juliea793 profile image
juliea793 in reply to oldtimer

I have looked at info. But no real answers before my visit tomorrow. I just wish had result of MRI scan before my visit. But that might not be available for couple weeks, it was done on 27th. I would love to restart Enbrel if it wasn't cause as 25mgs weekly kept me pain free.

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