I have severe heart failure & Crohn's disease, infliximab or surgery?

[LongarsBaby]

Hey there,
This is my first time in a forum, but really need some advice!
I had endocarditis in 2011, followed by a heart attack which has left me with severe heart failure. Since then I have been put on the heart transplant list, & been currently waiting for 3 years.
Last year, I was diagnosed with crohns disease, & put on budesonide at first, then azathioprine, then prednisolone, finally followed by mercaptopurine that my body really cannot tolerate. Iv been admitted to hospital now because of severe bleeding from my bowel caused by ulcers from my crohns, the surgeons are saying the only treatment available is to try infliximab infusions or surgery? These are the only options left due to my heart problems. Has anyone tried infliximab whilst having other heart problems & being on heart medication? I've read there are many side effects, some very serious if you already have a heart problem? Really in need of some past experience or advice, as I am in agony, very anaemic & panicking about making the right decision quickly.
Thanks for reading, & for any advice in advance!

 

[Jennifer]

Hi and welcome to the forum!

I'm sorry to hear about everything you're going through and really hope you'll get the transplant soon. From what I've read is that Remicade inhibits your blood's ability to clot and there's a higher mortality rate if you have heart failure.

"Cardiovascular

A higher incidence of mortality and hospitalization for worsening heart failure have been reported among patients with moderate to severe (NYHA class III-IV) heart failure treated with the higher dose of infliximab (the active ingredient contained in Remicade) (10 mg/kg). At 1 year, eight patients in the infliximab 10 mg/kg group had died compared with four deaths each in the infliximab 5 mg/kg and the placebo group."
http://www.drugs.com/sfx/remicade-side-effects.html

There's more information in that link under cardiovascular that may be of interest to you. I don't have any personal experience to share but I do have a concern. Surgery is usually a last resort and I understand that this is a special case but generally when surgery is mentioned as a very real possibility that means that what you're dealing with likely requires surgery. I don't think they would just throw it out there if you weren't a candidate for surgery. Since what you're dealing with sounds severe it may take some time (3 months or more yet for some relief comes quickly) to find the right dose of Remicade that works for you. If you have to keep increasing the dose then the risk of death increases because you have severe heart failure. I wonder if you could opt for surgery and then try to keep Crohn's in remission with a lower dose of Remicade after surgery. Yet I'm sure surgery alone can't be good for heart failure especially if you take any blood thinners.

Which choice did your doctor prefer? Please keep us posted on how you're doing.

 

[24601]

Has your doctor excluded the option of treating this Crohn's flare with Exclusive Enteral Nutrition? Or perhaps you are already on bowel rest? I realize that you may well still be dealing with the same tough choices but it might buy you some time.

Good luck and do update us :hug:

 

[LongarsBaby]

Hiya, & thanks for such rapid replies! My doctor has excluded any dietary treatment as my Crohn's has gone past the mild stage, & straight into severe symptoms. I wish it had been caught sooner so that the diet could have treated the disease but I was unfortunately too late.
I spoke to a bowel consultant earlier & is considering trying me on azathioprine again or mercaptopurine, however when iv tried these in the past, they have given me some really nasty side effects, he then went on to say that if this didn't work, infliximab would have to be introduced followed by surgery. In my opinion, id rather go straight in for the surgery, although I know there is a chance of death, but with infliximab there's problems like tuberculosis & cancers, & I really haven't got the strength to fight off any more problems. They hardly ever use infliximab in England, especially in heart patients, & iv been a guinea pig for long enough now! Does anyone know the chances or statistics involving infliximab , of catching cancer or tuberculosis or such like, even in just a healthy heart patient?
Thanks again for your support

 

[HelenMelb]

Really sorry to hear about your situation, LongarsBaby. I hope you can find a solution soon that doesn't aggravate your heart problems and can help your crohn's.

Just wondering if you have ever been offered flagyl/cipro antibiotics for your crohn's? My understanding is that these antibiotics will not impact heart function, but can dramatically help some people with crohn's. They need to be taken long term but the side-effect profile is quite mild compared to some other drugs on offer.

Best of luck going forward.

 

[24601]

Hi Longarsbaby,

I just wanted to make a distinction in terms of dietary treatment which may or may not be useful in your treatment but I think is useful to clarify because we too often get confusing information on this - Exclusive Enteral Nutrition is a very effective first line treatment, with similar efficacy to steroids and simlarly fast results. It's also better for mucosal healing than steroids.

I just wanted to say that it's potentially useful for the whole spectrum of Crohn's patients - from those with mild disease through to severe disease.

And doctors who say that you are either 'not sick enough' to use EEN (something I've been told!) or are too sick to use it are often wrong.

It's a very different kind of dietary treatment to other dietary adjustments like gluten or lactose free diets or SCD, Paleo or GAPS.

It may not be useful for you (it isn't for everyone) but I'd hate for anyone to have this option ruled out because of a misunderstanding or, as is often the case, bias on the part of our GIs.

There isn't much data regarding the risk from Remicade/infliximab alone since most patients will also be on immunomodulators at some time too - so there just isn't a large population of Crohn's patients on infliximab alone to use for studies.

However even the risk of lymphoma due to infliximab plus an immunomodulator is low. While the incidence of cancers like non-Hodgkins lymphoma may be up to 3 times higher in Crohn's patients on infliximab + an immunomodulator than in the rest of the population, the baseline incidence of such cancers is so low in the general population that this risk is still small. Source

Also you have to compare this risk against the risks associated with uncontrolled Crohn's disease - and for heart healthy patients at least the risks due to surgery, complications of Crohn's and bowel cancer are usually much higher and so the risk benefit balance usually falls very much in favour of using infliximab (and immunomodulators).

Your tb risk depends a lot on other factors like age, ethnicity and country of birth (source) plus also your exposure to other people/populations with increased incidence of tb. I haven't seen any tables of exact numbers but if proper screening is done prior to starting treatment then that reduces the risk greatly.

Good luck with your decision and treatment :ghug: