Are you sure you want to sign out?
User Name  Password
This Forum is for patients who suffer from Loin Pain Haematuria Syndrome, their supporters and friends. We also include those who also have IGA and IGM as they are closely connected.
Pleased be advised that the comments contained here may not be accordance with current Medical practice and we do not intend to come between the patient/web browser and their Medical Practitioners only to provide existing patients with a more informed voice and lifestyle when coping with this condition
Make a donation click here. Your support will help us remove ads and upload local images, etc.
Title: I think we are on to something!
Hop to: 
Views:282     
<<Previous ThreadNext Thread>>
Page 1 / 1    
AuthorComment
karashell
 Author    



Rank:none
Score: 26
Posts: 26
Registered: 09/06/2005
Time spent: 0 hours

(Date Posted:23/11/2005 05:10:49)

I wanted to share with all of you a treatment that looks like it is helping my daughter.Her nephrologist has put her on two pills a day:2.5 mg of Enalapril75 mg of PlavixWe did not notice much change for about six weeks. Then she started havingquite a fewgood days (as in pain level at -0-). This is amazing considering she has had a daily pain level of 4 to 9 on most days for over a year. Her life had pretty much come to a stand still.We are holding our breath hoping her pain doesn't come back. She is beginning to do things she hasn't been able to do and even weaning off her pain meds.If you haven't tried this regiment, I would recommend talking to your doctor about it. I had heard about the blood pressure pill a few months ago from a nurse whose daughter also had LPHS. She had said in her email that her daughter started showing drastic improvements after about6 weeks. At that time, I had questioned a couple of my daughter's doctors about it, but they said they didn't think it would work. I let it go until we found this nephrologist in Louisville, Kentucky, who recommended we try these medications.I am interested in hearing from anyone who has tried these medications and what results you have gotten from them. Also, let me know if your doctor agrees to let you try -I'm anxious to see if they help you.Connie Pavey

John01
1# 



Rank:none
Score:377
Posts:377
Registered:07/10/2002
Time spent: 7701 hours


(Date Posted:23/11/2005 22:54:59)

Hi Connie,
I have just checked out these two drugs and they seem to be treating her for high blood pressure rather than LPHS. This seems to be treating one possible aspect of cause of her LPHS.
Sure we all know that different drugs are tried from time to time in an attempt to aid the patient and I hope that this regime works for your daughter in the long term.
If you want to find out more on any prescrition drug in the US, try this site which is also in the Links Section of our website which you can get to by clicking on the logo at the top of the page.

US Drug Information


John

--------------------------------------------------------------
If you have had several good ideas today; keep quiet about them. Someone might steal them.

Support us

Create free forum and click the links below and your donations will make a difference here.
www.dinodirect.com

Online Huge Store for Various Cool Gadgets, Nintendo Wii Controller, iPod Charger, iPhone Cases, BlackBerry Cases, Laptop Accessories, Rechargeable Battery, LED Tactical Flashlight, iPod Earphones, iPhone Charger, Wii Controller, iPod Cables, Video Players, Music Players, Car Accessories, Cell Phone Accessories, Video Games Accessories and Hobby Gadgets.

If you use the code "DDLIFE", all orders will get 10% discount plus worldwide free shipping!
 
karashell
2# 



Rank:none
Score:26
Posts:26
Registered:09/06/2005
Time spent: 0 hours


(Date Posted:24/11/2005 03:16:53)

Hi John,

Yes I know that the Enalapril is a blood pressure medication.  However, they are not treating Kara for high blood pressure because her blood pressure is and always has been normal.  I don't know exactly why it works, but her nephrologist has had some experience with LPHS patients and has found that this combination of drugs has been helpful for some people.   After many different types of treatment and medications, this has been the first time anything has been effective for Kara.  I hope that other people talk to their doctor and possibly try it because it may work for them too.

Everyone should share anything that has worked for them in case it may work for others.  I have witnessed firsthand the pain this disease causes and have researched diligently to try and find any possible treatments.  Because LPHS is so rare and a lot of the medical profession aren't even familiar with it, we all need to look out for each other.

Connie Pavey
Support us

Just click the links below and your donations will make a difference here.
 
Alison Banister
3# 



Rank:none
Score:68
Posts:68
Registered:04/10/2004
Time spent: 0 hours


(Date Posted:26/02/2006 12:43:15)

Dear Connie,

I think you were absolutley right to share this information about anything that helps.  A lot of people have been told that LPHS is incurable & as recent research shows, once you believe this, it will be!  I am certainly going to ask my specialist about it.  Iguess there are others who have tried it with no benefit.  I don't know.

Alison

PS. Is your daughter still well?

--------------------------------------------------------------
Alison

Kim Hughes
4# 



Rank:none
Score:177
Posts:177
Registered:01/06/2003
Time spent: 0 hours


(Date Posted:22/03/2006 15:05:46)

I have been treated with the blood pressure medicine clonidine (AKA catapress) since 1990.  I DO NOT have high blood pressure and never have.  I was put on it to treat the effects of morphine withdrawal but the Ohio State University (USA) Pain Clinic (as they were known in 1990) had suggested it for me to take for chronic pain.  Clonidine is also used to lessen the effects of menopausal hot flashes (Yippeee!)

Why this drug works for chronic pain I don't know, but it does-at least for me.  Perhaps with LPHS patients it is related to the effects of blood pressure on/in the kidneys and the effects of it on the glomerular membrane.  I find that it also enhances the effects of my narcotics so I can use a lesser amount of them.

Obviously everything doesn't always work for everyone.  Please talk with your doctor and don't make any changes to your treatment without his/her consent.  We all want to stay as healthy and pain-free as possible!
<<Previous ThreadNext Thread>>
Page 1 / 1    

Biggest Coupon for Cucusoft Converter,Lowest Price 50% Off Online once in a blue moon!
Sign Up | Create | About Us | SiteMap | Features | Forums | Show Off | Faq | Help
Copyright © 2000-2009 Aimoo Free Forum All rights reserved.