RE: ACE levels

[Guest guest]

I think a normal ACE level is about 25? I remember when mine was over a hundred. That's when I was told to get to Dr. Baughman or count on dying. (That's how I remember it today. It may not have been that dire at the time, but it went something like that.)To: neurosarcoidosis Sent: Sun,

October 17, 2010 8:38:16 PMSubject: ACE levels

KP, ACE (angioconverting enzyme) is another marker for inflammation. It is not specific to sarc, although most sarcs have elevated levels. If other causes of inflammation are ruled out, sarc is the likely suspect. It is not impossible to have sarc & still have a normal ACE. My initial ACE level was ZERO, which is not normal. I had taken a b/p med for years that is classified as an ACE-inhibitor. My family doctor & my neuro (the wonderful guy that I told you about) both said that the b/p med wouldn't affect the blood level of ACE. Even the NS specialist I saw in ATlanta said the same thing! I talked to a lab guy & asked what zero meant, and he said you would be on an ACE-inhibitor or dead. I was pretty sure I wasn't dead, and sure enough, a few years later a sarc specialist in Indy said that, yes, it could reduce the blood level to normal or even zero (although he'd never seen a

zero). By that time I was so toxic from the Pred that I was being weaned off. This doc took me off the ACE-inhibitor (by this time I was on 4 antihypertensives thanks to Pred) & rechecked the ACE level after I had been off the Pred for awhile. It was in the normal range by then. It's only been elevated once, and that was barely over the normal; follow-up at 3 months was normal. ACE levels are also useful to evaluate success of treatment. If it's really high, then comes down after treatment, you know the treatment is working.

Ramblin' RoseModerator A merry heart is good medicine. Proverbs 17:22

> To: Neurosarcoidosis > Date: Sun, 17 Oct 2010 20:30:18 +0000> Subject: Re: Getting sicker?> > Hi,> > What is the sed rate? Is that the CRP leve, if it is my CRP level off the pred. was 12.5. As far as the ACE level the doctor doesn't use that - I asked and he said it has never indicated anything in his patients...so I don't know. What exactly is the ACE level for again? > > I am tappering off the pred now, but not off until DEC 16, which means I will have been full does - 100 mg for about 5 or 6 weeks, and now am down to 60 for a week and so on...until Dec. 16th.> > Thanks for your help/information - we all appreciate it.> > KP> > >> > Well K.PRZY.. when they draw a sed rate and an ace level, which both of them

are markers for your sarcoidosis/inflamation will come back (NORMAL) However when you come off the pred.. the markers will slowly creep back up.. the swelling in the face is normal for such high dose.. you have the moon face. it takes a long time for the swelling to leave.. that's not a good plan that your butthole doctor has.. > > > > Hugs,> > > > NS-Moderator> > Getting sicker?> > > > > > > > Hi,> > > > I am getting a bit worried, as I had to call the ER last night as all of a sudden my neck and face are swollen - I look weird and puffy around my chin, cheeks and collar bone. When talking with the on call Neur. she was flabbergasted I was

on 100 mg of the pred. and was completely silent after asking in a weird tone - are you sure you are reading the label right on how much to take?> > > > I had blood labs done - the 11 that test for kidney, liver, blood sugar all that and they said it came back fine. I also had a strep. test as my throat it sore. I am scared because it seems every couple of days new stuff is happening and my doctor is just like...oh that is normal. I appreciate the advice from all of you and am looking into a specialist and thanks to Jackie for giving me some names of people not too far away....it will just take time to get a referral and time to get to them. I am nervous that the Pred. and the huge amounts of D3 are wrong for me? It seems like this disease has not much things set about how to treat it and everyone has different opinions about it. Remembering that the DR said my D and B levels were almost non existent is why I am on such a high dose

of D3 (50,000) units every other day for 10 days, then once a week. Any way I have a sort of emergency appt with the Neur. tomorrow due to the swelling in my face and neck. Hope I get more answers and not more questions...and start to not have things go wrong with my body.> >> > > > > ------------------------------------> > ~~~~ *** ~~~ *** ~~~ *** ~~~~> The Neurosarcoidosis Community> > > > Message Archives:-> http://groups.yahoo.com/group/Neurosarcoidosis/messages> > Members Database:-> Listings of locations, phone numbers, and instant messengers.> http://groups.yahoo.com/group/Neurosarcoidosis/database > >

[Guest guest]

At my local hospital, the upper limit of normal for ACE is 60 or 62; at the med center it's 56.

Ramblin' RoseModerator

It's not that life is so short-------It's that we wait so long to begin.

(attributed to Wooden, among others)

To: Neurosarcoidosis From: rkelty99@...Date: Wed, 20 Oct 2010 12:30:49 -0700Subject: Re: ACE levels

I think a normal ACE level is about 25? I remember when mine was over a hundred. That's when I was told to get to Dr. Baughman or count on dying. (That's how I remember it today. It may not have been that dire at the time, but it went something like that.)

To: neurosarcoidosis Sent: Sun, October 17, 2010 8:38:16 PMSubject: ACE levels

KP, ACE (angioconverting enzyme) is another marker for inflammation. It is not specific to sarc, although most sarcs have elevated levels. If other causes of inflammation are ruled out, sarc is the likely suspect. It is not impossible to have sarc & still have a normal ACE. My initial ACE level was ZERO, which is not normal. I had taken a b/p med for years that is classified as an ACE-inhibitor. My family doctor & my neuro (the wonderful guy that I told you about) both said that the b/p med wouldn't affect the blood level of ACE. Even the NS specialist I saw in ATlanta said the same thing! I talked to a lab guy & asked what zero meant, and he said you would be on an ACE-inhibitor or dead. I was pretty sure I wasn't dead, and sure enough, a few years later a sarc specialist in Indy said that, yes, it could reduce the blood level to normal or even zero (although he'd never seen a zero). By that time I was so toxic from the Pred that I was being weaned off. This doc took me off the ACE-inhibitor (by this time I was on 4 antihypertensives thanks to Pred) & rechecked the ACE level after I had been off the Pred for awhile. It was in the normal range by then. It's only been elevated once, and that was barely over the normal; follow-up at 3 months was normal. ACE levels are also useful to evaluate success of treatment. If it's really high, then comes down after treatment, you know the treatment is working.

Ramblin' RoseModerator A merry heart is good medicine. Proverbs 17:22

> To: Neurosarcoidosis > Date: Sun, 17 Oct 2010 20:30:18 +0000> Subject: Re: Getting sicker?> > Hi,> > What is the sed rate? Is that the CRP leve, if it is my CRP level off the pred. was 12.5. As far as the ACE level the doctor doesn't use that - I asked and he said it has never indicated anything in his patients...so I don't know. What exactly is the ACE level for again? > > I am tappering off the pred now, but not off until DEC 16, which means I will have been full does - 100 mg for about 5 or 6 weeks, and now am down to 60 for a week and so on...until Dec. 16th.> > Thanks for your help/information - we all appreciate it.> > KP> > >> > Well K.PRZY.. when they draw a sed rate and an ace level, which both of them are markers for your sarcoidosis/inflamation will come back (NORMAL) However when you come off the pred.. the markers will slowly creep back up.. the swelling in the face is normal for such high dose.. you have the moon face. it takes a long time for the swelling to leave.. that's not a good plan that your butthole doctor has.. > > > > Hugs,> > > > NS-Moderator> > Getting sicker?> > > > > > > > Hi,> > > > I am getting a bit worried, as I had to call the ER last night as all of a sudden my neck and face are swollen - I look weird and puffy around my chin, cheeks and collar bone. When talking with the on call Neur. she was flabbergasted I was on 100 mg of the pred. and was completely silent after asking in a weird tone - are you sure you are reading the label right on how much to take?> > > > I had blood labs done - the 11 that test for kidney, liver, blood sugar all that and they said it came back fine. I also had a strep. test as my throat it sore. I am scared because it seems every couple of days new stuff is happening and my doctor is just like...oh that is normal. I appreciate the advice from all of you and am looking into a specialist and thanks to Jackie for giving me some names of people not too far away....it will just take time to get a referral and time to get to them. I am nervous that the Pred. and the huge amounts of D3 are wrong for me? It seems like this disease has not much things set about how to treat it and everyone has different opinions about it. Remembering that the DR said my D and B levels were almost non existent is why I am on such a high dose of D3 (50,000) units every other day for 10 days, then once a week. Any way I have a sort of emergency appt with the Neur. tomorrow due to the swelling in my face and neck. Hope I get more answers and not more questions...and start to not have things go wrong with my body.> >> > > > > ------------------------------------> > ~~~~ *** ~~~ *** ~~~ *** ~~~~> The Neurosarcoidosis Community> > > > Message Archives:-> http://groups.yahoo.com/group/Neurosarcoidosis/messages> > Members Database:-> Listings of locations, phone numbers, and instant messengers.> http://groups.yahoo.com/group/Neurosarcoidosis/database > >