Need information on heart involvement and WG

[LisaMarie]

I know from what I have read that it can effect the heart...is there any other test beside the echo that needs to be done annually....would test that shows the vessels also be helpful?...My last echo was ok but showed some regurgitation on the tricuspid (trace to mild) and pulmonic (trace)...I have not been too concerned but with my new found WG...i am a little concerned...I was told my chest pain is unknown eitology and may be fron vessel spasm...nothing to be concerned about...lol ..I hate that phrase...I think a doctor should be concerned when a patient is I guess that is just the nurse in me...any info would be great

[Jack]

This might be of interest although I have not read through it all - http://rheumatology.oxfordjournals.org/cgi/reprint/35/2/188.pdf

[Sangye]

I don't know the answer to your question about other cardiac tests, but magnesium and vitamin B deficiencies can cause leaking valves and vessel spasms. Both are depleted with pred. It's best to see a holistic physician for a thorough evaluation of your nutritional needs. They have better quality supplements than those you find in a health food store.

[LisaMarie]

My echo was done before the the prednisone and the WG diagnosis....I had the lapband done over 5 years ago and eat healthy decreased my fat ..increase my healthy protien and eat lots of veggies...Thanks Jack for the article I am reading it now

[Sangye]

That's a great article, Jack. Some important quotes:

"Two weeks after initiation of immunosuppressive therapy his condition deteriorated suddenly, his pulse rate increased to 150/min and was associated with hypotension and a gallop rhythm. A repeat ECG showed the changes of a recent extensive anteroseptal myocardial infarct with established Q waves"

"At no time had the patient complained of chest pain."

"Our case is unusual in that the cardiac complications occurred several days after the commencement of treatment, at a time when the patient's clinical state was improving."

"Cardiac muscle and vessel involvement is much rarer clinically, occurring in less than 2% of the 158 cases followed over a mean period of 8 yr. Pathological examination of tissue, however, demonstrates that cardiac abnormalities are much more common. An early review of necropsy findings in Wegener's granulomatosis reported abnormalities in 30% of cases, although the majority of patients had no cardiac symptoms whilst alive and died from non-cardiac causes. The commonest histological abnormalities were those of coronary arteritis and pericarditis, both occurring in approximately 50% of cases with cardiac involvement"

"...It is important to be aware that the potential for serious cardiac involvement exists, and that it should be considered in asymptomatic patients if there are any changes in pulse or blood pressure recordings. More frequent ECG recordings and a low threshold for requesting echocardiography would appear appropriate."

[Jack]

This heart involvement thing seems to be creeping out of the woodwork doesn't it? But if there is a problem detected, I wonder if there is anything they can do about it or will it just be another source of worry?

[Sangye]

The article described various ways that Wegs can affect the heart. Some can certainly be addressed.

It's important for us to know what's going on with our hearts. Most of us try to do some sort of exercise, and it could be contraindicated with certain types of heart problems. Forewarned is forearmed. Before someone answers with "Ignorance is bliss," remember that you can survive multiple heart attacks, only to have permanent heart damage. Makes for a lousy quality of life.

Also, note that this case study is of a 23-year old man with newly-diagnosed Wegs.

[Jack]

I hung back from saying "you've got to die from something" for that very reason. The luck of the Wegener's probably means that a heart attack would just make life more miserable. It is just that the thought of another silent killer is something I don't want to take on board at the moment. Denial rules! ;)

[elephant]

Yearly echocardiograms are wise. I like denial also.:)

[jola57]

Wow, this does change things for us, silent and deadly. Thanks Jack for bringing it for us. I have had 2 echo's done since I was diagnosed, both normal. But, I experience chest pains, heart aches, sharp pains around the heart area, palpitations and loud and hard beats like my heart was going to jump out of my chest. This does not sound good, one more test that we should have as a routine every year at least.

[LisaMarie]

I know from what I have read that it can effect the heart...is there any other test beside the echo that needs to be done annually....would test that shows the vessels also be helpful?...My last echo was ok but showed some regurgitation on the tricuspid (trace to mild) and pulmonic (trace)...I have not been too concerned but with my new found WG...i am a little concerned...I was told my chest pain is unknown eitology and may be fron vessel spasm...nothing to be concerned about...lol ..I hate that phrase...I think a doctor should be concerned when a patient is I guess that is just the nurse in me...any info would be great
Ok ...got my echo done ....I have lost my pulomo regurg but now have mild hypertrophy of the interventricular septum...not enough hypertrophy to cause a problem ...Will see what the WG doc says....ughh......Still waiting on approval for rituxen and trying to avoid cytoxin....Hopefully the doc will have a plan Friday.....Still on 20 of pred a day and 10 of methrotrexate a week.....Does anyone have a remedy for my funky tongue....it's not thrush...but it feels funny and looks funny....kinda like a bumpy road map...don't want to use miracle mouth wash...any suggestions would be great..thanks

[Jack]

I get various problems with my tongue, usually sore at the sides as if it is catching on my teeth. I can clear it up in a day or two with a good mouth wash. You might want to reconsider. Compared to the other stuff we take it is pretty harmless.

[elephant]

Jolanta I still get chest pain but mild, and heart feels like it is racing but it isn't. I think it is all the meds that I'm on. I had many EKG's stress test and echo done. Everything checked out ok.
Lisa Marie show your WG doctor....it could be wegeners or medication.

[jola57]

Same here, but even though all my yearly tests are negative for heart, ENT, eyes, bones I will continue to monitor every year. I am overdue for my pulmo, hadn't done it since my last flare. Will get my mammogram next month as well. Due for cyctoscopy next march and waaay overdue for colonoscopy. Have I missed anything?

[elephant]

Did you notice how were all checking our orfices!

[LisaMarie]

found another article on WG and heart issues: Cardiac WG masquerading as left atrial myxoma
Cardiac Wegener's granulomatosis masquerading as left atrial myxoma -- Herbst et al. 75 (4): 1321 -- The Annals of Thoracic Surgery (http://ats.ctsnetjournals.org/cgi/content/full/75/4/1321)
hope the link works

[LisaMarie]

Cardiac Wegener's granulomatosis masquerading as left atrial myxoma -- Herbst et al. 75 (4): 1321 -- The Annals of Thoracic Surgery (http://ats.ctsnetjournals.org/cgi/content/full/75/4/1321)
maybe this will work

[LisaMarie]

Cardiac Wegener's granulomatosis masquerading as left atrial myxoma -- Herbst et al. 75 (4): 1321 -- The Annals of Thoracic Surgery (http://ats.ctsnetjournals.org/cgi/content/full/75/4/1321)
maybe this will work

it works just click ii I know it looks funny...good article ....kinda scare though