Retroperitoneal Fibrosis Member Introductions

Retroperitoneal Fibrosis
#41

Well, lets see, it all started 11-27-06, I noticed that my right calf area and ankle was swollen. I called by doctor and he told me to go to the ER and get an untrasound for fear of a bloodclot. Well, I was admitted and for the next four days, I must have had 5 different ct-scans, mri, mra, ultrasouns, ekg, x-rays, and many, many tubes of blood taken.
After 4 days, the final verdict was RF.
So, I met with my family doctor and of course, he could not help me. He referred me to the University of Miami, where I am being treated now. I had a ct-scan assisted needle biopsty, thank god, no cancer, but RF was confirmed by the urologist that is treating me.
Since I found out about this RF condition that I have, I have not experienced any pain at all. I feel terrible for all the other people that I have read about who are having problems.
My symptons have been that the veins in my right leg get swollened and the veins in my foot become a deep purple color when I am on my feet for more than an hour. When this happens, I sit with my leg elavated for about 5 minutes than everything goes back to almost normal.
Just recently, the last 2 weeks, I have been experiencing some pain in the upper portion of my butt area below my waist, I guess this could be considered lower back area. I am concerned about this. The pain is not constant. Sometimes, its not that bad at all, but a couple of times, I have to sit. The pain only occurs when I walk.

I am on the following treatment:

Tamoxifen 20MG Twice A Day

Prednisolone 60MG Every Other Day For 30 Days THAN

Prednisolone 30MG Every Other Day For 14 Days THAN

Prednisolone 15MG Every Other Day For 14 Days THAN

Prednisolone 5MG Every Day.

I started the 30MG Schedule last week.

I am also taking Atenolol/Chlorthal 50/25 TBMYL for High Blood
Pressure. I read somewhere that Atenolol was linked to RF.

If anyone has any input or past experience, I sure would like to hear
from you.

Thank you so much and May God Bless You,

Lou South Florida

#42

a very good friend of mine has just been diagnosed with retroperitoneal tumors and I am just trying to educate myself on what that is and how I can help

#43

My sister has the disease and I would like to get additional information.

#44

Just diagnosed w/ Retroperitoneal Fibrosis - looking into treatments to shrink mass

#45

Hello all…I’m 50…awaiting more tissue study results, but it seems clear I have (hopefully) early stage RPF…as I like to call it…benign…very concerned and interested in any info y’all have on treatments/dosages/options and esp. side effects…real vs. those warned about.

Many thanks, Greg

#46

My husband was diagnosed 6/06 with RPF. It has been a tough year and now he is in a plateau with the condition. His neph tubes were taken out a few weeks ago and his health seems to be stable but he is still sick and not able to do much. Doctors at Mass General Hospital seem to think he will be OK for now and I would like to know how long a RPF patient can go without another terrible bout of the disease? I am afraid to leave him alone even though his ureters seem to be working. Any long range information will be helpful. Thank you, shirley

#47

Hi,

I’m Jan & live in the UK. I was diagnosed with RPF in March 2006. I was admitted to hospital as an emergency in acute renal failure. I had to have a nephrostomy tube and stent inserted the next day. After a CT scan a few days later, a provisional diagnosis of RPF was made. This was followed by a needle biospy and then in May 2006, an open biopsy. The diagnosis of benign RPF was confirmed.

I still have a JJ stent in my right ureter which I have changed every 6 months. I’ve been on high dose Pred - from September 06 to June 07. I’ve recently had another CT scan to see if there has been any improvement in the mass and am awaiting the results - appointment with urologist in early August.

It’s nice to find this group and to know that there are others out there who know what this disease is like. I hope I can also offer support to others as well as receive it when if I have problems or worries.

#48

i m a retroperitonal fibrosis patient in TURKEY.i am ill for 2 years.

#49

My Dad has this condition and it is turning our whole world upside down. I’d like to chat with others to see how they are dealing with it.

#50

Hi everyone, I have been diagnosed July '07 w/RF and just checking this site out.

Michele in NC

#51

Mc in NC wrote:

#52

Mc in NC wrote:

#53

Several of you have responded to my post and much to my anxiety - I have NO idea how to retrieve your posts. If you could e-mail me at chanut@verizon.net and let me know how it’s done - I’d really appreciate it. Thank you.

#54

Hi I also have RPF and thought it was very rare. I am pleased to connect to people who also have this condition. I have been nauseated since June and have lost 30 pounds. I really need to lose the weight - but this is not the way to do it. I am in danger of losing my right kidney. I have had this for the last 10 years and it is coming back. Like others I have a sharp pain in my back which I was told was from the infection. I have to wait for another few weeks to get an operation because I so recently had an operation and the doctor says I need to wait.

#55

hi there
iam a 47 year old male with rpf and the last 18 months havew been hell thank god it has not hit the kidneys as of yet but it did spread to the thorax and iam in as much pain as i ever been in the doctor has started me on a high dose of preadisone and tamoxfine hope that this does some good as nothing has worked so far what have they done for you and what are you on where is your rpf get back and let me know ok and where are you from iam from toronto canada have not met to many people from canada at all i thinki have only met 2 other people in the last 18 months
tks
wade

chanur rpf-cpt2326@lists.careplace.com wrote:

#56

Hey wade…

I’ve had RPF since probably Feb. this year, but not diagnosed until July. I
started on 60mg/day prednisone only and have tapered down to 20mg/day
now…my mass hit the small bowel and almost caused serious trouble but
the prednisone has saved the day.

There’s a guy at Johns Hopkins who is treating patients with prednisone and
mycophenolate mofetil…with good results…Dr. Paul Scheel…he’s one of
the only people focused on this disease…over 100 patients…but you have
to be a patient for them to talk to you very much…might want to check it
out.

I’m in the dark as to whether or not I will go into “remission” forever or
not…disturbing to hear about this other guy who has had it for 10 years
and having a relapse.

Where is the thorax? In the back? has the mass moved or grown? How often
are you gettting CT scans? How did they decide to add Tamoxifen?

I had a skiing accident and broke my pelvis, which is what we THINK caused
this…what about you?

Keep in touch and good luck!

Greg

----- Original Message -----
From: “wade” rpf-cpt2326@lists.careplace.com
To: cybergrog@tampabay.rr.com
Sent: Thursday, October 04, 2007 6:44 AM
Subject: Re: [rpf] Retroperitoneal Fibrosis Member Introductions

#57

wade wrote:

#58

Chanur…thanks for the note. Tell me more detail about your history and I
may have some new info for you. I just got it this year and have been doing
serious research on how to fight it and with what doctors/drugs etc…You’ve
had it 10 years? I would really appreciate a brief history of your
treatments/conditions and how it’s affected your lifesyle. maybe we could
talk on the phone if it’s too much to write. 813-915-8189 is my number.

I’m on just prednisone right now…started at 60/mg/day…down to 20mg now.

Cheers!
Greg
----- Original Message -----
From: “chanur” rpf-cpt2326@lists.careplace.com
To: cybergrog@tampabay.rr.com
Sent: Thursday, October 04, 2007 6:38 AM
Subject: Re: [rpf] Retroperitoneal Fibrosis Member Introductions

#59

hi greg
tks for getting back so soon well the thorax is in the chest the empty space all around the heart and lung area it has spread its still in the abdomen also just now in the other area too
iam also on 60 mg of predinsone also just started that dose last week trying to see if we can get a response from the mass i go every 2 or 3 monthe for ct scans did the doctor say if the predinsone has helped slow the mass from growing and what made him cut you down from 60 mg a day just woundering how old you are iam 47 and have had this sence DEC05
thats when i started to get a lot of pain iam also on morphine for the pain we tryed the predinsone last year but it did not do a thging for me so now he wants to increase the dose
and see what happenes where do you lkive iam in toronto canada well hope to here back from you take care
wade

grogster rpf-cpt2326@lists.careplace.com wrote:

#60

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Welcome Wade=0D
=0D
Sorry though that you need to be here. =0D
=0D
I was diagnosed March 06 after I went into acute kidney failure. My mass
was too hard (like cement I was told) to do the surgery to free the urete=
r.=20
I only have one kidney that is functioning (due to the RPF probably) so t=
hey
couldn’t risk damaging the ureter if the operation failed. I’m on Pred a=
nd
it has actually helped reduce the mass a little. It also makes me **feel=
so
much better - more energy, less hot sweats and it also improves the
lymphoedema I have in one of my legs.=0D
=0D
My doctor is also thinking about putting me on Tamoxifen too as the
combination is less likely to cause osteoporosis I believe. Strangely
enough, like Greg, they believe mine was caused by a severely fractured
pelvis as well. Because I also fractured my spine at the same time, my
doctor is concerned that I don’t get osteoporosis as well. The specialis=
t
thinks that I’ve probably had it for quite a few years before it got to t=
he
stage where both kidneys were obstructed and I went into renal failure. =
I
have a ureteric stent which keeps the one remaining kidney working pretty
well luckily. I have to have it changed every 6 months though which is a
bind. Actually having it done next Tuesday for the third time since dx.=0D
=0D
With most AI diseases, there is always I guess a possibility of a relapse
but hopefully, with careful monitoring that won’t happen to any of us. :=
o)=0D
=0D
Jan (UK)=0D
=0D
Diagnosed March 2006.
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Welcome Wade
 
Sorry though that you need to be here. 
 
I was diagnosed March 06 after I went into acute kidney failure.&nbs= p; My mass was too hard (like cement I was told) to do the surgery t= o free the ureter.  I only have one kidney that is functioning (due = to the RPF probably) so they couldn't risk damaging the ureter if the ope= ration failed.  I'm on Pred and it has actually helped reduce t= he mass a little.  It also makes me **feel so much better - more ene= rgy, less hot sweats and it also improves the lymphoedema I have in one o= f my legs.
 
My doctor is also thinking about putting me on Tamoxifen too as the = combination is less likely to cause osteoporosis I believe.  Strange= ly enough, like Greg, they believe mine was caused by a severely fracture= d pelvis as well.  Because I also fractured my spine at the same tim= e, my doctor is concerned that I don't get osteoporosis as well.  Th= e specialist thinks that I've probably had it for quite a few years befor= e it got to the stage where both kidneys were obstructed and I went into = renal failure.  I have a ureteric stent which keeps the one remainin= g kidney working pretty well luckily.  I have to have it changed eve= ry 6 months though which is a bind.  Actually having it done next Tu= esday for the third time since dx.
 
With most AI diseases, there is always I guess a possibility of a re= lapse but hopefully,  with careful monitoring that won't happen to a= ny of us. :o)
 
Jan (UK)
 
Diagnosed March 2006.
 
 
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