View Full Version : Can anyone advise
<span style="color:#6600CC"><span style="font-size:12pt;line-height:100%">Hi
Mary, my friends daughter, who is aged 15 was diagnosed with Lupus nephritis about 7 months ago, The doctor in our area (Wales) is not that up on Lupus, she is a very good kidney specialist but does not seem to be in tune with Lupus. So her mum is concerned that this new course of treatment that she wants Mary to take is not a good choice. The Lupus has not been kind to her and she has nephrotic syndrom, besides the obvious drugs she is taking the new drug is ENALAPRIL MALEATE a tablet 2.5 mg. Has anyone else tried this course of medication, is there any advice or assurance I can pass on to Mary. Mary has refused to take these at the moment. she has a second appointment with Mr Cruz in July so she is waiting to speak to him.
Thank you
Yours
Din </span></span>
<div class='quotetop'>QUOTE(TeriJ @ Apr 25 2006, 02:43 AM) Quoted post</div><div class='quotemain'>
Din
You are very kind to your friend's daughter. The whole family needs support. I had one question, what kind of doc is treating Mary's Lupus?
[/b][/quote]
The local Doctor treating Mary is a childrens kidney specialist. She is very good at what she does, but as I said she seems to have little knowledge on the Lupus that is causing Marys kidney damage
Hi,
Enaparil is a tablet for lowering blood pressure. Often when the kidneys aren't working well, the blood pressure gets too high too. High blood pressure can make the kidneys fail faster, so this becomes a vicious circle. High blood pressure can cause strokes if it is very high. It is important to control the blood pressure.
Your friends daughter should talk to her doctor again if she hasn't been given a decent explanation of her medications.
In this case, it isn't going to affect the Lupus directly, but it is still an important tablet for the control of her health.
Maybe you would like to invite her to join us?
We have other teenagers here and she would be most welcome
BethannUK
04-25-2006, 04:24 PM
There is some evidence that using an ACE inhibitor (also called ACE) such as enalapril may have some benefit to someone with Lupus related kindey disease
There is a process in the kidney where Angiotensin 1 is conversted to Angiotension 2- ACE (angiotenstion convertion enzyme) inhibitors can reduce hypertension, but has other beneficial effects. And ACE inhibitor blocks part of teh conversion between AT1 and AT2, resulting in a block on a mechanism that riases blood pressure.
The Lupus UK site has a comprehension retrospective study on the use of ACE inhibitors in Lupus nephritis (neph- meaning kidney, itis meaning inflammation so nephrtis means kidney inflammation), . It is unfortunately in gobbledook, a preferred dialect of many medical professionals... nut lets see if I can give you a little tatse of what it says
The discussion showed: (this is a cut and paste from the paper) "Our results showed that ACEI/ARB treatment led to sustained improvements in both proteinuria and serum albumin in subjects with quiescent lupus but persistent proteinuria. Proteinuria was significantly improved after six months of treatment, while the improvement in serum albumin occurred after 24 months. These findings thus provide further evidence for the longterm benefits of ACEI/ARB treatment, as suggested by the six-months data observed with ARB treatment"Lupus Nepthritis abd proteninurea, and ACE (http://docserver.ingentaconnect.com/deliver/connect/arn/09612033/v14n12/s3.pdf?expires=1145977812&id=28585092&titleid=3766&accname=Guest+User&checksum=8422C27D29586298AE087F93AA6C4B1D)
Basically, the googlegook translated to: Taking an ACE can help; with monitoring, it is very unlikely to make matters worse, and since it can help, it would be wise to try while and use it trying to figure out what else to do.
Hi Din - I'm sorry Mary is having a rough time.
The drug Mary has been given is a blood pressure med - brand name Vasotec. The MedLine fact sheet on it is here: Enlapril (http://www.nlm.nih.gov/medlineplus/druginfo/medmaster/a686022.html)
It is VERY important to control blood pressure in kidney disease. My nephrologist explained it by saying that the kidney is a filter that leaks when it's damaged. What happens in a hose that leaks when you turn the water on full blast? It leaks more. So controlling the pressure in the blood vessels is really important to help control the leakage.
By "the obvious drugs" do you mean chemo? (e.g. Cytoxan, azathioprine, cellcept, prednisone?) I know it's a ton of drugs - I think I was on about 12 when my kidney disease flared - but they all do different things for different reasons. It's hard - and I'm sure Mary is feeling like a pharmacy right now - but I would strongly suggest that she call her nephrologist to ask her to explain why she needs to take this one too. Kidneys are delicate organs, and July is a long time to wait for an explanation.
I was dx'd when I was 14, so I know it's hard as a teen. If Mary wants to email me, I'd be happy to talk to her. My email address is in my profile.
Give her my best - I'm sending good vibes her way!
Lisa
raggedyann1
04-25-2006, 11:59 PM
Din,
I agree that the mother should speak to the doctor about her fears so she will be comfortable taking the new medication that has been prescribed.
I also see that her daughter will be seeing dr de la Cruz at St. Thomas in London? is that what you mean when you said she would be seeing mr. cruz in July. Dr. Cruz is the top lupus specialist at the Lupus Center at St. Thomas. That is an excellent place to get a 2nd opinion.
As far as her current meds you can check the main page of this site to see medications commonly used in treating lupus. http://thelupussite.com There is also plenty of other information written for the lay person at our main page. Maybe you could print off some pages for your friend so she feels more comfortable with what her daughter is taking.
Take care,
Karen
Thank you all so much for your comments which I have passed on to Mary and her Mum.
You are a strength to all.
Thank you. At the moment Mary is not online but hopefully this will be sorted out soon and she can correspond personally to you all.
Powered by vBulletin™ Version 4.0.0 Copyright © 2010 vBulletin Solutions, Inc. All rights reserved.