Retroperitoneal Fibrosis Need help

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my father is suffering from retroperitoneal fibrosis. His mass was 160 into 80 into 42mm. he underwent surgery and the mass was reduced to 100 into 60into 20mm. he is on steroids for treatment. unfortunately, when he re scanned after 3 months, the mass has increased to the same size as it was before i.e. 160 into 80 into 42mm. This means that steroid therapy is not working. We want alternate medications. Please help. The doctor will do his work but as son i have to play my part.

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  • Posted

    I am truly glad that i have found some information about this life changing illness. My name is Rufus i was diagnosed with the disease since 2008. I was having severe back pain all of a sudden. It took them approximately 6 or 7 months to diagnose the issues. I even went to the Mayo Clinic in Jacksonville Florida. I will not of the types of treatment and knowledge they have in the UK but here in the states I'm not sure if they are really anymore knowledgeable then your current treatment situation. I know that I am truly grateful that the diagnosis was benign but it certainly has not been a bed of roses during this journey. I have not had the surgery but I have been on large doses of prednisone and mycophenolate to get the disease under control. However for the last 3 years or more then issues haven't been back pain but all stomach issues. From naseua and vomiting. In and out of the hospital every 2 or 3 months. However since the last hospital visit and frustrated with going through the emergency room process and getting the doctors to understand the severity of the problem is more than stomach aches and discomfort. I decided to be more proactive and informative about my illness and how i can get back some of my quality of life. I am also going the world site through yahoo. I would appreciate just talking with and getting information about how some other people are doing and how successful has their treatment been etc. I am willing to help anyone else i can and also an eager to learn and find out how to cope and live with this life changing experience. God Bless and keep you all until next time and the journey ahead.
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    • Posted

      Hello i was reading through your comments and am glad that i found others in same position my husband was diagnosed with this ilness for 6 months doctors kept saying his stomach pains are gas related he kept loosing weight in the end they sent him to specialists who did biopsy scans and came up first with sarcoma we went through so much then after some weeks his case went to uchl in london who confirmed its retropnial fibrosis he been on steroids 6 months now pain stil there he gets so much pain he on morphine zormoroh stil he in pain he cant do much he had stents put in sp his kidneys dont get blocked our lived have changed i just dont know if this will get better what other treatments there are just not enough info on this
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    • Posted

      It saddens me to know there is so little information on this disease. I too was diagnosed with RPF in 2013. I had two biopsies done and both came back negative for cancer. The doctors were so sure it was cancer because of the rate the mass was growing. They did a PET scan which also came back negative. My family doctor had put me on prednisone 60mg daily when I first went to him. Thank God he did. The specialist put me on a drug called Cellcept. I was on it for over a year and it did nothing to help. Keep in mind this whole time I was suffering with such back and abdominal pain I actually thought of just wanting to die. I told my specialist I wanted to contact Mayo clinic so he set up an appointment with Minnesota Mayo clinic via the internet. He sent the doctor there all my records. The doctor from Mayo clinic said to keep me on the prednisone and add shots of methotrexate which I injected myself. The mass is still there but it stopped growing and actually shrunk it some what. They tapered my prednisone down over the years until I was on 1mg daily. They just recently took me off of the prednisone and I am waiting to get an MRI to see if it has effected the growth of the mass. I can no longer get CT scans because my doctors fears with how many I've had over the past 4 years it is too much radiation. I still have lots of back pain and I'm unable to live my life the way I did before I got sick. I walk with the help of a cane and take pain meds which do little for the pain. Morphine didn't even touch it. Vicodin helped me more but I use them sparingly because one they are no good for your body and two they can be very addictive. Methotrexate has its bad too. Without it though the mass would continue to grow causing more pain and eventually death. I have since opted to try methotreaxe in pill form because I got sick from the shots and they weren't easy to do. The pills have had my mass stable now for several years. I pray that my MRI comes back ok and I won't have to go on prednisone again. Prednisone has caused alot of weight gain and high glucose levels in my blood which I have to take metforman now to help with that, which it is helping so far. I pray for anyone going through this disease. Doctors know nothing about it and you feel lost. The pain...oh my God the pain. I can't tell you in words how bad the pain is with this disease. I consider myself to be a high pain tolerant person but this pain would bring anyone to wanting to just die to get rid of it. Please if anyone out there has this disease talk to Mayo clinic in Minnesota. Without them and the perscription of methotreaxe I would assume I wouldn't have survived this long. I don't want to leave out that I have had extremely high levels of blood in my urine now for 10+ years and maybe longer. I had this checked several times and they couldn't find what was causing it. Myself I believe the fibrosis is the culprit. Also I have read that this disease is known to compress your spine in the region of the mass, lower back. All the doctors including Mayo clinic told me my back pain had nothing to do with the fibrosis. My family doctor was the only one who told me it most certainly is caused from the fibrosis. It also causes nerve pain in the lower back because of the compressing and inflammation. Funny thing is my family doctor also has fibrosis. All though it's a different kind. I pray to God this post helps people in some way. All the people suffering and I truly mean suffering from this disease are in my prayers. May God help us all find a cure.

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  • Posted

    Hi,

    I have RPF diagnosed in 2012, this has developed into igG4 quit rapidly, traditional steroids didn't work well for me they had limited positive effect and the side effects were quite debilitating.  I tried oral Methotrexate 2.5mg increasing to 20mg over 6 months which stbilised the condition. I am now injecting Methotrexate which has improved all of my inflamatory markers quite significantly.  The inital side effects of this are equvalent to being knocked out by a boxer, but afetr a few weeks they stabilise and now about 24hrs after the injection I am feeling fit enough to move around and have a relativley normal life.

    I hope this helps, I sympathise with your father I am 53 and very shocked by how dibilitated i have become due to RPF.  There is little comfort in knowing there is e no cure for this only management. I am in England where ther is very little support for the condition, though my medical team are fantastic.

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    • Posted

      Steve how is your condition these days?

      I too have RPF and igg4

      I'm on methotrexate and prednisolone

      I initially was diagnosed with cancer in the ureta by 3 seperate well respected urologists.

      A surgery that was to take 2 hours ended up taking 7 hours with another surgeon called in.

      My ureta kidney and lymph node was 'chiseled' out of me. They were fused on blood vessels and my surgeon said it was like removing concrete off tissue paper.

      I'm left in constant sciatica nerve pain day and night.

      My physiotherapist has recommended me to exercise to loosen my glutes as these muscels are extremely tight.

      He says this is causing the sciatica nerve pain - my immunologist believes it's a placebo- even though I did not experience sciatica nerve pain prior to the operation.

      I am extremely anxious to get off these chemical drugs.

      The long term affect on my other organs/health is a real worry.

      I'm searching for answers.

      I've been to natural therapists urologists endochronologists immunologists and a specialist looking into the 'cause' of this disease.

      I am desperate to rid this out of my body and live an active healthy life - pain and worry free...

      I hope someone can help....🙏

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  • Posted

    Your doctor probably should look at what is causing it, lime an auto-immune disorder, namely IGg4. Very rare, but it is what my immunologist diagnosed as being the cause of my RPF.

    good luck

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