Heart Failure due to Biologic therapy

[juliea793]

I have been off Enbrel for 2nd time now due to a Heart failure incident almost a year to day after having the same. My Rheumatologist at time said there was not a link so started back on drug January last year. He has again told me to stop drug after again having problems in November 19. On both occasions my heart output has reverted back to normal while off the drug.

My question is has anybody had monitoring for heart failure while on biologics .Like echo scans etc.. I am keen to restart if I can be monitored. I have so much flare up at moment.

Bur awaiting consultations from Cardiology and Rheumatology in coming 3 weeks. I just would like to know other peoples views..Many thanks..

[Stayloose]

Just wondering whether you are having 2 separate consultations or whether they are consulting with each other. Frustratingly the latter frequently doesn't happen. When you see the Rheum you could ask if it could be brought up at a multidisciplinary meeting, MDT, with Cardiology invited so it could be discussed between them. I hope you can get it sorted soon and satisfactorily.

[juliea793 in reply to Stayloose]

Two different consultations. Two different hospitals. Two different health Authorities. X

[Stayloose in reply to juliea793]

Ooh.. That's tricky. I hope it becomes clearer to you what you want to push for and that you soon restart something and feel better and confident in your care

[DelicateInput in reply to juliea793]

That is a total disgrace and totally incompetent. I'm afraid I would not take it again. RA is one thing and there's a lot you can do yourself to control it. Heart failure is a much more serious condition and I would not risk it. There are other drugs. These people need to get their act together. Ask to see a cardiologist at the same hospital as your rheumatologist, with a joined up approach from the two?

[juliea793 in reply to DelicateInput]

I have been with my Rheumatologist since 1989 and always had good repour and when I moved 12 years ago I was still prepared to travel the 45 miles to keep him.

My heart is back to good quality output again but I need to discuss with both Consultants to the way forward as had tried all other treatments prior to starting Biologics.

[sylvi]

Don't go back on it, if you have had problems twice with it you might not get so lucky next time you go on it. I was not on the same drug as you darling, but I had some serious problems with Baricitinib, I was supposed to go on in in Nov. 2018 and the blood tests showed I had come into contact with TB and by the time I got through the antibiotics it was late spring. I hadn't been on it long when I had a infection and f the drug. Then again in Nov. last year. Then Christmas eve I was taken of it again due to side effects of the drug eg; breathing and coughing problems. I am now suffering withdrawal and the effects of only have MTX to see me through, so yes I am in a flare as well as withdrawal. So take a active role in your care if you think it is the cause then tell them no more of it and please give me something else.xxxx

[wishbone in reply to sylvi]

Agree with Sylvi, personally I wouldn't care what my doc said about there not being a link. If my heart beat wasn't right the two times I was taking the drug and reverted back to normal off it, then that would be enough of a warning for me!

There's plenty of other meds available.

[juliea793 in reply to wishbone]

There has to be a time when you choose what you want. I am hoping they can monitor if I go back on Enbrel .Ra its self has risks with heart. I had all other drugs before starting Enbrel 16 years ago. If they can do echo scans as a monitoring I would be happy to continue.. But need to have advice from both Consultants..j

[wishbone in reply to juliea793]

If you are happy to carry on with Enbrel after talking to your consultants then fair enough, and having tried all the other meds does limit your options. Like many people here, I too have had to make some risky decisions regarding meds one of which went against me big time. I seem to have made the right choice with the others, though they are still a work in progress I suppose. Anyway, good luck Juliea, I hope things work out for you.

edit...was your RA flaring when you were having the heart issues?

[juliea793 in reply to wishbone]

No. It came back after 6 weeks off the drug. I had stopped drug as thought it was a chest infection. The rest is history. I always abide by rules of drug and infections. Thanks for your reply. J

[wishbone in reply to juliea793]

When I had a mild heart attack 15 years ago I asked the cardiologist if my RA caused it. He reckoned no because it was inactive at the time, which it was most of the time back then in the relatively good old days.

Something worth bearing in mind perhaps when you talk to your consultants.

Take care.

[HappykindaGal]

Could the RA itself be causing the heart issue and the meds are a coincidence! My BP has soared since having RA.

It’s a pain the consultants are in different health authorities. I know if it’s the nhs this is probably unthinkable as technology seems to have bypassed them, but could you all do a Zoom call perhaps? Having worked in the nhs I’m not sure why I’m even suggesting it to be honest, but you just never know.

[juliea793 in reply to HappykindaGal]

I am hoping they can work together as I can communicate with both Consultants..TY

[Hidden]

If your heart goes back to normal off the drug don't touch it! Clearly there is a link. I had similar issues with sulfasalazine.

I hope things improve for you soon.

[Bluepegasus in reply to Hidden]

May I ask what they put you onto after Sulfasalazine? I’ve had a similar problem.

[Hidden in reply to Bluepegasus]

It was one of the first drugs I was put on...and one of the worst! I have PsA not RA. At the time my bowel was a mess too so I guess they were thinking it would help that. I had the worst reaction to sulfasalazine. It flashes up on my medical records now to not be given.

I actually don't take anything other than the odd intramuscular steroid shot now. I faired rather badly on dmards and benepali. Fortunately, I'm better off the drugs than I am on them. Not perfect, but better.

[wishbone in reply to Hidden]

Reading the posts here over the years, there does appear to be more reactions from sulfa than other meds. I too had to stop taking it but only because I developed a rash.

[Bluepegasus]

Thank you Bunty62, hope you stay as well as possible, all good wishes.