HealingWell
Search Close Search
☰

Loin Pain Hematuria Syndrome

Support Forums
>
Lupus
✚ New Topic ✚ Reply
❬ ❬ Previous Thread |Next Thread ❭ ❭
Posted 3/21/2007 1:27 AM (GMT 0)
Hi Everyone,

  I hope that everyone is able to get some rest tonight. I just got done making a post about proteinuria, and then remembered that I wanted to bring up Loin Pain Hematuria Syndrome. I see a Dr. Hebert in Columbus, Ohio who is a Nehphrologist {also deals a lot with Lupus}, and he is one of the doctor's that keeps up with my LPHS. Does anyone here have LPHS, and if so, how is yours treated? After years of having crippling kidney pain, I finally had a kidney biopsy in 2001, which led the dr.'s to realize it was LPHS. I also belong to the chronic pain forum, but since Lupus and LPHS can be connected, I wanted to see how many people on here have been diagnosed with LPHS. Thanks!

Take Care,

Heidi

Posted 3/21/2007 3:21 AM (GMT 0)
Hi Heidi,

Never heard of this. Educate us, please! Thanks.

xoxo emmie
Posted 3/21/2007 3:39 AM (GMT 0)
Hi Emmie!

  Well, its been a long day, and I have some serious brain fog going on, so I don't know how well I will be able to explain Loin Pain Hematuria Syndrome.  The basics are, its a really rare syndrome that causes the glomeruli in the kidney to either be thick or thin, and it causes excruciating {in most cases} kidney pain and bleeding. In my case the cells and glomeruli are too thick, causing a lot of pressure in the kidneys, and causing a huge amount of pain. I wish I could explain it better, but its just not a good night! The unfortunate thing is that there aren't too many things you can do, and it usually requires lots of narcotics, which you eventually become tolerant to, and they don't work as well. I have been on the Fentanyl patch, Fentanyl Lozenges called Actiq {for breakthrough pain}, and Dilaudid {when the pain is awful}for over six years now. I am 27 now, and have been having this kidney pain since I was 13. I wasn't diagnosedf until I had a kidney biopsy at 21.  I moved to Ohio about seven years ago, and am lucky because one of my nephrologists is one of the leading experts on this condition. So, after the biopsy, I was finally taken seriously, instead of looked at like a drug seeker. Anyway, I will try and explain this better later. I hope I at least made a little sence!!

  Take Care,

  Heidi

Posted 3/21/2007 12:00 PM (GMT 0)
Hi Heidi, I'm sorry you are having such a hard time. (((hugs))). I have never been diagnoised but I have had kidney pain for several years now. In fact I take pain meds for it. My doctor said she wants to investgate it further but wants to get to the bottom of this lupus thing first. I was wonderig if it causes probablems like feelings of UTI and bladder cramps. even though I don't have a UTI. I also have pain that runs down the inside of my thighs right below my pelvis. It feels like a really bad infection that is radiating pain but the tests all come back neg. anyway I was just wondering if it is anything like that.

I'm sorry you are in so much pain. I do understand the doctor looking at you like you are trying to hussle them from drugs. I hate when they do that.
I hope today is better for you
God Bless
carol
Posted 3/21/2007 3:08 PM (GMT 0)

Carol,

   I'm so sorry you are having a rough time! Usually, I don't think that the pain from LPHS migrates much, but I'm sure it could be differen't in some cases. For me, its usually in the kidneys, and lower back. The definitive test is a kidney biopsy. If you have a lot of kidney pain, you should see a nephrologist, if you don't already. If so, has he mentioned anything about Loin Pain Hematuria Syndrome? Do you ever get blood in your urine? I hope today is a good day for you!!

   Take Care,

    Heidi

Posted 3/21/2007 6:09 PM (GMT 0)
Hi Heidi, No I havn't been tested for it. I did have an ultra sound done and I have a cyst in my right kidney. The doctors said lots of people have cysts so basically that got blown off. Thanks for the info though. I will bring it up again with my regular dr. when I have my next visit.

hugs
carol
Posted 3/21/2007 8:32 PM (GMT 0)

Carol,

  Its so unfortunate that so many things get blown off in regards to health {or lack thereof}. Cysts are kind of common, but they can still cause pain. Did you say you were on pain medication? If so, is it helping? I hope so. Someday's mine does and sometimes it doesn't seem to do much of anything. If you are still having kidney pain, maybe you should ask a nephrologist if a kidney biopsy would be okay, so that way you could at least rule out Loin Pain Hematuria Syndrome, and know what you may be dealing with. The worst part is definately not knowing what is wrong with you. I hope that your pain is not too bad today.

  Take Care,

  Heidi

Posted 3/22/2007 3:59 AM (GMT 0)
Heidi,

Thanks for the education, you did a fine job. I am so sorry you have been suffering from this since you were so young. And you are still young! Is there nothing else they can do for this besides giving you pain killers? Do your kidneys still function normally? Sorry I'm so full of questions. I hope you don't mind. And I'm truly sorry for your pain.

xoxo emmie
Posted 3/22/2007 6:56 AM (GMT 0)

Emmie,

   Thanks for the care and concern. Very sweet! I am glad that I described it half way decently. Unfortunately, there isn't much they can do. Sometimes they put people on an Ace Inhibitor {a type of heart med that can sometimes affect the pain}, but I can't take it, because I have a heart problem that requires a differen't kind of heart med. Then, there is an outlandish treatment that is sometimes, but rarely done. Its called Auto Trasplantation. Its a major surgery...they take the kidney, and remove it from the side, and place it in the stomach. Sometimes this helps people, but a lot of time the pain just ends up in the stomach. Not to mention, this disease usually involves both kidneys at some point, so then what? I don't have great kidney function, but they think that that {including a lot of protein loss} is probably from the Lupus, not the Loin Pain Hematuria Syndrome. It usually doesn't cause kidney failure. I just wish LPHS wasn't so painful, I would like to get off all the pain meds. It makes it real hard when you have a major surgery, and require pain meds. I had a total Hysterectomy in September, and the pain was awful, and not controlled at all, because I've become so tolerant to narcotics since I've had to use them for six years or so. Its not like I'm taking Vicodin either. I'm taking the big drugs like Actiq, and Dilaudid. The good news is that I live in Ohio, and the main guy that deals with this disease is in Columbus {about a half an hour from me}, and I keep hoping that I will get some really good news on other ways to deal with this horrible disease someday. You never know! Interestingly enough, over on the pain forum, there is a big post with lots of people that have LPHS. I just noticed it today. Its amazing to see all the posts, even though its rare!  Sorry to go on and on! Thanks for being so sweet to me.

Take Care,

Heidi

Posted 3/22/2007 12:18 PM (GMT 0)
Hi Heidi:

I first would like to say welcome to the forum. You've met a wonderful bunch of ppl here and they are a huge support all the time. I saw where Babs posted about me having troubles with my WBC being high. Acutally, my WBC is really low. I do know from seeing my oncologist though, that in most leukemia cases, the WBC is above 50. I read that your port was seeded with an infection. It's quite possible that the infection wasn't totally cleared up and that you need it pulled and a new line placed in.

I feel for you on the bone marrow biopys. I've had 4 of them done, and am getting ready to have another soon. I've got MDS (it's a form of blood cancer) and to judge how things really are, they need the biopys again. I would recommend that you get a referral to the hem/onc docs and let them take a good look at you. These doctors are well trained and they look at the blood smears themselves if they think anything is off in the lab.

I'm wishing you the best, and I hope you can have some pain free days. We're all here for you and I'm looking forward to getting to know you more.

Take Care,

Barbara
Posted 3/22/2007 2:14 PM (GMT 0)

Sorry Barb,

   I got that wrong.... eyes , Glad you straightened that out.

                                                        Love ya, Babs

Posted 3/22/2007 6:50 PM (GMT 0)
Barbara,

 

  I'm so sorry about all that you have had to go through, and appreciate you and everyone else taking the time to reply to me.

   I just had blood cultures done yesterday, so it doesn't appear that there is a current infection..which is good, because I'm on my fifth port, and this one is only about 2 months old. No, this has been something that has been going on for two years, and it never goes away. Its gotten blown off though, because I've had so many other things come my way {Besides SLE, I also have Loin Pain Hematuria Sydnrome, Gastroparesis, renal cancer..with mets, and some minor things like sleep apnea}lately.

  

   Is your gastroparesis bad? I really hope not. Before I went on chemo, it seemed awful, but after chemo, mine hasn't been as bad. I used to have a J tube, and now can get by most of the time on a liquid diet. My main goal is to stay off of TPN.

   When things settle down, I think I'm definately going to ask for a referal to a hematologist. I am pretty sure I don't have Leukemia though, because I had a blood test {Flow something or other}, and it was negative for that. I realize that you don't truly know until you have a bone marrow, but I'm pretty sure.

  Once again, thanks for replying, and I hope that today is a good day for you.

  Take Care,

   Heidi

Posted 3/23/2007 2:37 AM (GMT 0)
Heidi,

Thanks for the information on your unusual disease. You certainly have more than enough to deal with. I am glad that you live fairly close to a doctor who is so well regarded in treating this. And how strange is that to come across several on the pain forum who have the same thing! Healing Well is great.

Please take good care of yourself. Again, I'm sorry that you have to deal with so much pain on a daily basis.

xoxo emmie
Posted 8/23/2012 2:46 PM (GMT 0)
Hi ravenhairedvixen,
I was diagnosed with LPHS 8 years ago and due to the nature of the condition all my doctors can do is treat the symptoms but not the disease as sadly there is no cure, no magic tablet that will make it go away.
I was given a cannabis license as it has natural anti-inflammatories (if you have the condition you are not allowed allowed any man made ones as it can aggravate the condition ). Due to cannabis i have came off morphine (as i was 5 1/2 stone((77lbs in US terms even though the rest of the world goes by stones not pounds)) on it and i looked like a junkie). They also gave my fentynl patches which releases pain killers every hours for 3 days.
I am also on epilepsy medication as it acts like a fishing net catching small pain travelling up the spinal cord but sadly not big pains.)
If you would like to know anything more please dont hesitate to ask but i must say this THERE HAS BEEN NO LINK TO LUPUS AND LPHS NO WHAT-SO-EVER

Scottie kiki
✚ New Topic ✚ Reply