Left sided heart failure and Vasculitis. Anyone else been diagnosed with this ?

[Essex-jill]

I was diagnosed with WG over 17 years ago with Saddle nose deformity and I have chronic kidney failure too. I have been receiving Rituximab every 6 months for the last few years and have been lucky not to have had steroids for approx the last 10 years. I'm 55 years old.

Since my last infusion in October, when I had a chest infection I have been experiencing increasing breathlessness on exertion and swelling of my hands and feet.

Today I attended a cardiac appointment to be told it looks like I have left sided heart failure Due to the Vasculitis !!!

Has anyone else been diagnosed with this or heart failure please ? What treatment did you have please ?

I will be having an echocardiogram to confirm this along with a NT Pro BNP blood test (told this could be falsely positive or raised due to kidney failure )

Any advice would be gratefully appreciated.

Jill

[Suzym2u Moderator Vasculitis UK]

John has WG and was diagnosed with an irregular and erratic heart beat 18 months ago. He was diagnosed with WG 15 years ago. John had a series of tests and scans over a period of 3 months and was finally diagnosed with a "sluggish" left ventricle. He now takes medication and things do seem to have improved. Both John and his consultant do not know if this new problem is connected to the WG but both suspect it probably does.

Please let us know how things go for you? Essex-Jill

[Essex-jill in reply to Suzym2u]

Thank you for your reply Suzy

I will keep you updated when I get some more results.

Glad to hear things improved for John with medication, hoping mine does too.

Jill

[PaulaC]

Hi Jill, I had a 'shortness of breath' episode about 15 months ago, which resulted in damage to the left ventricle. I was revived by a crash team and placed on a ventilator for 24 hours, during which they discovered I had damage to my heart. The specialist heart team at Oxford JR diagnosed Takutsobo cardiomyopathy (although my local heart specialist was very sceptical).

I suffer from HUVS which is affecting my lungs, I don't know if the damage to the heart was caused by the one incident or had been building up over time. I was already being seen by a respiratory specialist as suffering from a lot of breathlessness but my COPD had not been diagnosed at that point.

Have you had any investigation as to whether your WG is affecting your lungs (which may be causing the heart problem)?

Once my heart condition was identified it was treated quite easily over a 3 month period and nothing has shown up in subsequent follow up investigations.

[Essex-jill]

Hi Paula.

Thank you for your reply. I'm glad to hear you are now doing well.

I have not had any lung investigations for quite a while, there has never been any lung involvement with my WG, just my nose and kidney.

I have my echo next week and then the results, but I will speak to Doctor Jayne when I see him next dependant on the results.

Jill

[Essex-jill]

I just thought I would update everyone that replied to my post.

My echo is normal. Thankfully no signs of left sided heart failure. So I'm still unsure why I feel so breathless, fatigued and so unwell.

I hope to get an appointment back to Addenbrookes next week to see David Jayne and discuss possibly more investigations and maybe a bronchoscope. As I know something is wrong and this has been going on since October now. I wonder if I'm having a flare up ? I just want to feel better and have some energy.

Jill

[Essex-jill]

Thought I'd give you another update.

Went to Addenbrookes and I'm awaiting more tests.

Going to see a Respiratory Consultant next week and another cardiologist urgently as my team are not convinced it's not my heart. I mentioned that I felt my 'wonder drug' Rituximab hasn't worked, given in October. To be informed that they are finding a lot of patients are reporting that it's not working for them. So they want to investigate my symptoms before they decide on alternative treatment. Either Cyclophosphamide or Plasmapheresis!!!! Not looking forward to either of them. But just want to feel better as I've felt unwell for 5 months now.

Can I ask has anyone else found Rituximab no longer effective after long term use ?

Thank you

Jill

[Albasain]

I was diagnosed with myocarditis when I was first diagnosed with Rheumatoid arthritis. It affected just a small area near the apex of the left ventricle making the muscle slightly sluggish in that area. I'm glad to say the consequent tests since have shown that the heart muscle has improved and that it no longer gives problems.