Biologics after a Heart Attack

jamieA

I had an emergency procedure for a blocked heart artery 3 weeks ago. I had actually thought it was a chest infection and it came as a real shock when the medics described it as a heart attack afterwards. After being discharged I had a call from a cardiac rehab nurse who casually mentioned at the end of the call I'd need to come off adalimumab. I said I didn't think that was possible as the 3 drug therapy I'm on was the only way my PsA was controlled. She asked me to talk to my rheumatology clinic which I did. I was initially told I could continue with adalimumab and took my injection. However I received a call last Thursday from a rheumatology nurse to say I had to stop the biologic. I've asked if there is any alternative course I can take as the conventional DMARDs didn't work. I'm on a 3 drug therapy of sulfasalazine, methotrexate and adalimumab and last year my rheumatologist reluctantly agreed to me reducing my sulfasalazine and I subsequently had a flare and it had to be raised to the maximum level again. The nurse said she'd ask about possibly changing to another biologic.

I'd just like to ask if anyone else has been in this situation and what was the outcome?

Arciere

My goodness @jamieA

I hope you’re okay.

I'm afraid I have no advice other than to perhaps suggest asking for a more senior intervention.

I’m a total layman when it comes to medicine, but I’ve been of the view that some of it is about risk/benefit management and medics personal views. No medic wants an adverse impact on the back of their decision - gone are the days of an experienced view - now it has to be evidence based to avoid litigation.

I wonder if the evidence based practice can sometimes mean broad brush application, rather than personalised care, is applied. E.g someone has simply looked at a data sheet and made a safe judgement call (computer says no).

So to try and be helpful , I wonder if you can try and have your case escalated to seniors per se? I presume there is a medical director of sorts at your local hospital - could someone write to them asking for their attention to your case - to arrive at the best solution for you, personally.

I would be concerned about stopping the Adalimumab too. I also think we have to trust the advice - but I get where you’re at.

frogmorton

Oh no @jamieA I am gutted for you. In the last post I read of yours you feared this may be the case.

I have everything crossed that you can actually speak to someone (possibly higher up as @Arciere suggests) certainly not just a Rheumatologist via a specialist nurse on the phone.

Sending ((()))

Toni x

jamieA

Hi @Arciere and @frogmorton

Thanks for your responses.

I've not had a callback from rheumatology but I was speaking to my GP yesterday about the way my medication has been loaded onto my morning. Cardiology has packed all the drugs onto my morning blister pack so I'm currently taking 12 pills - 11 different drugs - first thing. I'm wondering if that's part of the reason my blood pressure was so low during the 2 mornings I was in hospital. I'm on 2 blood thinners plus aspirin as well as 2 diuretics. She's redistributing the drugs she can to be taken throughout the day so hopefully that'll ease things. During my conversation with the GP she mentioned she'd received a letter from rheumatology stating I could continue to take the biologic. It was dated the day before the phone call I received from the rheumatology nurse so I'm really confused. I've put in a call to the rheumatology clinic voicemail service and I'm waiting a call back.

Ellen

Hope you get a favourable response @jamieA.

This is something that has the potential to affect other people on biologics here so please do let us know how you get on.

Ellen.

jamieA

I called my rheumatology clinic yesterday and had a call back in the afternoon. I recounted my conversation with my GP and the nurse said the letter was a misunderstanding and that the consultant was of the view I should stop the biologic. When I asked why the nurse said she would get the consultant to call me 'to cut out the middleman'. There appears to have been no communication between rheumatology and cardiology which I find really frustrating - and quite alarming. This has echoes of the first time I was admitted to hospital with atrial fibrillation in 2021 and was put on a heart drug that shouldn't be taken with NSAIDs which I was on at the time for my PsA. I only found out at the time by reading my discharge letter where the cardiologist stated that the manufacturer stated these drugs should not be taken together. I contacted my GP pharmacist who said under no circumstances could I take both drugs. I followed that up by contacting the cardiologist and suggesting he should have talked to rheumatology. His answer was ' in an ideal world yes but the NHS doesn't work like that'. It seems like I'm back to this. I think the term is Silo Working Culture.

I've read numerous peer reviewed medical articles on adalimumab and heart issues and while there are a number of specific reports of individuals who have experienced heart issues whilst on adalimumab there are also a number of studies which show statistically that anti TNF alpha drugs reduce the likelyhood of heart issues. The NHS site simply states to tell your specialist if you've had heart failure before starting adalimumab.

jamieA

https://community.versusarthritis.org/discussion/comment/729408#Comment_729408

Hi @Ellen

I had an appointment with a cardiology nurse today. It turns out it depends on the severity of the heart attack as to whether you can continue with biologics. They measure the severity by something called Ejection Fraction which is expressed as a percentage. The lower the percentage the worse it is. My EF was described as mild to moderate as it was 2% lower than the mild lower end of the spectrum. Cardiology had forwarded these results to rheumatology and said it was a decision to be taken by rheumatology and myself. They did understand that the levels of stress caused by inflammatory arthritis that became uncontrolled would also have implications for my heart. She said cardiology and rheumatology were in email conversation about my case. Later today I received a call from my rheumatologist to say I could continue to take the biologic but had to be extremely careful of contracting infection and to contact my GP immediately if this happens. It also turns out that the 4 year old card I had for my rheumatolgy consultant's secretary was wrong as they'd changed their telephone numbers in the intervening years.