My immune system is killing me

[stemie]

I am told I have cold haemagglutinin disease (CHAD) where my immune system destroys my red blood cells. I understand this is a very rare autoimmune disease and I wonder whether there is anyone else out there who also has it?

The main consequence of CHAD is low haemoglobin (HB) counts: ie anaemia. Since haemoglobin carries oxygen round the body, my hospital doctor said my heart would have to work proportionally harder until it could no longer provide the required oxygen. The strain this puts on my heart is being measured using a BNP blood counts. My current BNP is about 7000. Has anyone else been given a BNP of 7000?

Any comments very welcome

[10gingercats]

I can well imagine how worried you are. Apparently a drug called Rituximab is used t help control CHAD.

[stemie in reply to 10gingercats]

10gingercats

Thank you for your reply. However, I didn't get any benefit from having Rituximab. Neither have immuno suppressants (dexamethasone and MMF) been successful.

I would be interested to know if you have CHAD and whether Rituximab actually gave you long term improvement?

Stemmi

[Adhtz21]

Morning, my Mum has that along with Good Pastures Disease, which came out of the blue at 64yrs of age and led to kidney failure requiring dialysis. She is now over 81yrs of age. Her Consultant Nephrologist keeps her on Steroids all year round due to her

[Adhtz21]

CHAD - Presnislerone or something like that. Her skin is wafer thin though. He stopped the steroids one year and she was really ill so restarted them all year round. She copes witj it extremely well as sometimes her levels have been really low leading to blood transfusions. The blood for transfusion has to be warmed. Goodpasture's is extremely rare and was hard to diagnose, hence the renal failure just prior to diagnosis. Wishing you all the very best.

[stemie in reply to Adhtz21]

Hello Adhtz21

Thank you for your reply. It seems that your mother has CHAD since I also have to have warmed blood when I have transfusions. I hope your mother can get out and enjoy life a little now that the weather is warmer.

I am unable to have prednislerone because it ascerbates another medical condition but I have had short doses of an alternative steroid called dexamethasone that only gives short term benefits.

Thanks again for your reply.

Stemie

[MelB51]

Hello. This condition is exacerbated by the cold, as the name suggests so keep warm as a minimum! What happens is that the autoantibody attaches to the red cells, mostly in the extremities (e.g. fingers and toes) affected by the cold, but the antibody can ‘fall off’ the red cells as they pass through the circulation and warm up. However, another blood component from the complement system remains attached (C3) which causes cells to be destroyed, for example in the spleen. Obviously if this continues, the individual becomes anaemic with all the problem that brings. It sounds like this has happened to you, so I hope that your doctor can find a solution for you. I would think you would be referred to a Consultant Haematologist regarding this condition unless they can find and cure any underlying cause, when the CAD will also be resolved. Good luck!

[stemie in reply to MelB51]

Hello MelG51

Thank you for your reply.

I've had CHAD for many years and am already with Haematology Consultant so I am aware of most that you are saying. Do you actually have CHAD ? or are you working in the subject?

In any event I have been on most of the immune suppressants (except longterm Prednislerone that I cannot tolerate because of osteoporosis)

Once again many thanks for your reply

Stemie

[MelB51 in reply to stemie]

No I don’t have CHAD (lots of other health issues though!) but I used to travel around the world giving lectures on various aspects of immunohaematology and blood transfusion. That was before I became too ill to even travel. Hopefully they will find something you can tolerate that brings some relief.

[Ads568]

Hello Stemie,

I had a BNP of around 7,000 a few years ago. I had severe heart failure and dilated cardiomyopathy. I was functioning pretty well day to day at that time. My condition deteriorated to end stage heart failure (with kidney failure, etc) and my BNP went up to 14,000. It was later found that sarcoidosis (an auto-immune disease) had caused all the issues with my heart, which was only discovered after I had a heart transplant. Do you have a good relationship with your consultant/s? Could you ask for a frank discussion with them so you get all the information you need to help you get to grips with what's going on with your body? That way you can find out if there are things you could do to help yourself as well as the wonderful medications that are available to us all.

I fully get what you say about your immune system harming you though. It's a strange situation to get our heads round. I wish you all the best.

[stemie in reply to Ads568]

Hello Ads568

Thank you for your reply.

In my case they have not found anythins wrong with my heart or kidneys. It seems that my heart is working OK but under strain because of my age, anaemia, and having to work overtime to supply the blood/oxygen my body needs needs.

The impact of anaemia on heart strain does not seem to be one of the factors usually considered when looking for the reason for high BNP.

Thanks again for you information.

Stemie

[Adhtz21 in reply to Ads568]

Wow. You are incredible going through all that yet remaining so positive.