new myocarditis MRI results; what now?

[Britomartis29]

Dear Forumites,

Yesterday I received results from my followup cMRI for myocarditis. The good news, it is better since the first cMRI in April. There is still swelling and enlargement of the heart walls, but not as much, and the EFs (ejection fractions) are both still down, but not as far down (55% and 63%! hurray, almost back to my usual 67-70%). The "Impression" block said that the myocarditis is "somewhat improved." This fits with how I feel: much less chest pain and haven't fainted or felt wobbly in a while now; regaining energy and alertness, and toes/feet are not as cold, that sort of thing.

The doctor who ordered the followup cMRI wrote me in the patient portal and said that he wanted to see another cMRI in three months, and at that time if it is not completely cleared, he wants to give me one of two drugs: Azathioprine (known in the US also as Imuran) or mycophenolate (also known in the US as CellCept). I believe these drugs are pretty powerful and have some seriusly bad and long term side effects. I have not been on any medication for myocarditis at all (except I happened to be on a short course of prednisone for 10 days for something else, and that helped the chest pains greatly).

I will have the third cMRI in December.

Questions: Does his plan seem extreme? Have any of you ever tried a course of prednisone to reduce the swelling and inflammation first? And from a practical, patients'-experience point of view, if you've had myocarditis, and continued on the rest-rest-and-more-rest plan, when did you feel good starting things like slow walking and yoga again? He gave no instructions on that side of things.

Thank you for any thoughts, experiences, suggestions!

[Captain_Birdseye]

That's great news on the mri results!

In the states, treatment options are different from where I'm based, I've been experiencing symptoms for 14 months and not been offered anything but colchicine - so I can't advise on this. The drugs you mention are immuno suppressants and will have side effects, but they would treat the underlying cause of the myocarditis. Prednisone is a steroid and comes with it's own list of side effects... it would be up to you and your doctor to decide on the risks and benefits.

I started cardiac rehab at 7 months - I coped ok with it, but if I get flare ups it's back to resting. It's frustrating, but if you feel able, take it slowly and listen to your body.

[Britomartis29 in reply to Captain_Birdseye]

Thank you, Captain B---I will ask about rehab and the balancing act of the drugs. Yes, in the US they tend to shove the drugs at you (big phrama and insurance companies have to have their cake you know [grrrrr]). But we do have the right to refuse any treatment and I sometimes have done that and never regretted it! So I will ask those pros-and-cons questions. Thanks again. Hope you keep getting better. 👋

[CDreamer]

Just wanted to say that I take Mycophenolate for an autoimmune condition as it is an immune suppressant, as is Azathioprine. (I seem to think that you need a genetic test to see if you can have Azathioprine? My neurologist wanted to change me over and did the test). I’ve taken Mycophenolate now for nearly 10 years at the maximum dose 3gms/daily and am just starting to reduce and hopefully come off it as I am now almost symptomless. It was recommended to me as a steroid sparing drug as I have arrhythmias which Pred is known to exacerbate and affect heart and also have just so many unwanted side affects. I am carefully monitored but have not experienced any noticeable ill affects and the chronic inflammation I used to experience is now just about vanished, thankfully. That may not all be down to Cellcept as I have also used Lifestyle adaptations and food as medicine. It may be worth seeing a Lifestyle Doctor for advice on Lifestyle as very few Physicians seem to ever give advice on the practical day to day stuff. I have been advised that it’s important to move but also rest - it was about getting the balance right without exacerbating inflammation which exercise can do.

If you are in US I expect you may have to pay for drugs and Mycophenolate is expensive - Pred is very cheap

Hope that helps.

[Britomartis29 in reply to CDreamer]

This is greatly encouraging. Yes, it was my lupus doctor (rheumatologist) who suggested the two immune suppressors (even though we really are not sure that it is caused by the lupus--I did not have a flare during the time leading up to the chest pain. So... I wonder. There is definitely inflammation (MRI shows it) and I have hugely elevated Ig-M levels, and did since about the time leading up to the chest pain.

I have good insurance that will pay for the meds (I say this even as I can't stand the way health care is handled here in the US, as a profit-driven thing, having lived and worked in the UK previously and appreciated the NHS so much). But the money will not be an issue, thankfully and luckily. Many people cannot afford their meds here and too many sicken and die because of it. It is awful.

This helps a great deal and I appreciate hearing from someone who has been on that for a long time and is doing fine! Yay for you. And thank you. 🌟