Study Suggests Targeted Drug Is a Potential Therapy for Rare Joint Disorder PVNS

Are there any clinical trials currently underway near the Atlanta area?

First diagnosed in 2007, I have had two sinovectimies on my left knee. I had low dose radiation after the second surgery in 2009 as the PVNS returned within six months after the first surgery. All my procedures have been through the University of Michigan Cancer Center. This is the first I have read about trials for any new drug to alleviate swelling and pain and have just given into eventually getting joint replacement. I will contact my surgeon in Michigan as I know live in Minnesota about her knowledge of any trials available unless you have other suggestions. It is something we live with and are thankful it's not cancer but it would be wonderful to be more active. Thank you so much for the use of the site!

New to PVNS, even though my knee hurt on and off for years, I never went in until I could not walk one morning, I had an on target diagnosis and the tumors were removed by my orthopedic surgeon.
He suggests exploring radiation therapy.
I live 2 hours out of NYC and feel I should get Dr Taps opinion.
I am interested in the clinical trial if I fit the profile and its not too late.

Hello,
My 28 yr old daughter was diagnosed at 22 with PVNS in her knee. We live in Sydney Australia. So far she had had 2 lots of surgery. Her doctor is at RPA Sydney. He said she should not do drug trial as she is of child bearing age. We are keen to hell her and get this disease sorted out . I don't want her to have this life long and have read online about amputation etc . Can you direct us to drug trials or any treatment for her please ? Thank you in advance . Regards, Lizz for Jess

Hello,
I have been dealing with PVNS in my right knee in 2014. Had three arthroscopic complete synovectomies since then and the knee looks better about a month after surgery but the symptoms come back and the disease progresses rapidly. Most recent surgery, 3rd one was in March 2016 and my surgeon was surprised at the way the disease progressed all around the knee and suggested pursuing other options which may help slow the rapid progression of this disease. Are your clinical trials still open?

Thank you.

Hi I'm from Yorkshire and
Just got diagnosis of PVNS IN Knee , I'm having a biopsy on Monday , I'm very scarred this appears a nasty debilitating disease , can you tell me does this is it something that will shorten my life span ?
Thank you for reading

Hello! First, I want to say that I admire the work you are doing and am grateful for doctors like you! Second, I was wondering if there is a list to put your name on for any upcoming trials? I have pvns in one, possibly both, knees. The left knee started when I was 17 and I had two surgeries to remove tissue that same year. Now, my other knee has been exhibiting the same symptoms.

Thank you!

Thank you in advance for all the amazing work I am learning about !
I have suffered with right knee PVNS for about 16 years now ... I'm finished with surgeries honestly unless so necessary .
And over last 5 years my left knee is suspect !
I am on medicine for pain and inflammation and look forward to being free of that done day without losing quality of life !
I wonder if this trial may still be open or if it may be moving forward !
Thank you in advance , respect
Christopher

I am 22 you female who has just been diagnosed with DPVNS in my left knee. The oncology orthopedist wants to perform a synovectomy with an open anterior incision. Would this trial be appropriate for me? Should a skilled surgeon be able to perform an arthroscopic synovectomy with the same results? Thank you.

Can you explain to me pvns in advanced stages that it says it wraps the bone, my son was dx with pvns through bx and has had tibia and fibula bone grafts, what are the chance this can reoccur and what are chances it can start in other joints.

I came across this article today. I have been diagnosed with diffuse PVNS since 2012 and have had 3 open and scoped knee surgeries since then; 4th is scheduled for Jan 2017. Will there be any new clinical trials coming up?

I have had two major surgeries to remove my severe diffused PVNS and it has come back aggressively within months. Since the joint is degraded with nothing left, my oncologist is sending me to a radiation specialist. My concern is degrading the bone so I cannot get a full replacement or if a do a replacement the disease eats the glue and I am back to the beginning. Since my oncologist says this is the second worst he has seen and it is back, I am looking for a solution before amputation becomes part of the conversation.

I was a participant in the PLX3397 trial forb20 months. I had lots of side effects, the most severe were critically elevated liver enzymes. On 2 occasions, I had to hold the drug until my levels came down. Those 2 times happened within the 1st 7-8 months on the trial. Then on cycle 20, the levels became the highest ever and since this was the 3rd time I had to be removed from the drug. That was 1 1/2yrs ago and I am still having elevated liver enzymes that have cycled from normal one month and then extremely elevated another month. I Have had a liver biopsy and it was determined to be related to the drug. I have also had lingering joint pain and swelling (esp. in my hands). I can say I have yet to feel like my old self even after being off the drug for a yr and half. I can say that related to my tumors in my knee, I did have tumor reduction of 35% and did notice a difference in my knee function. Of course now that I am off the drug my tumors have grown back in size and I am currently waiting as long as possible before I have my 3rd surgery. I say all of this not to deter someone from participating on the drug, but to explain that it is still a chemo drug, which is not easy on the rest of your body and the side effects were a lot harder to overcome even after more than a year off the drug. I am aware that the study moved to phase 3 I think and many participants are having liver enzyme elevations. If you chose to start this drug, please pay very close attention to the side effects.

Hello All, I've read many comments and my story is similar in many ways. My pain and swelling started when I was very young. I saw many doctors across the US and was finally diagnosed when my ortho sent a biopsy from my total knee at the age of 22. I was having similar problems about 3 years later and went in for surgery again. Unfortunately I developed a staph infection and fought it for 6 years. I am now on my 4th total knee. I moved to OR and I've started having symptoms again. I have been trying for the last 3 months to find a doctor that is willing to see me. Everyone I see says it's just chronic pain but my family doctor, physical therapist and I believe it may be a reoccurance of my PVNS. I was hoping you may be able to recommend someone for me in my area.

I have been diagnosed with diffuse PVNS in my right knee. I am getting a second opinion from an orthopedic oncologist here in Ohio but I also have Factor V and am on coumadin. I would like to be in the clinical trial for PLX3397. The site says the trial is closed but I would like to try to get in.

My wife, a registered dietician, has suffered 50 or so years with knee PVS and after 25 surgeries and two replacements, still has intermittent flare-up. Most recently we have consulted with our orthopedist and sought a consult with one at Southwestern Medical School, Dallas, my Alma mater, who recommended a bone scan after which he has replied the need for yet another additional consultation. This prompts me to cast about for those having capability to offer some relief short of amputation,
As remote as we are, there is still an interest in seeking help and would appreciate a more proximate therapist.
Personally, I suspect she is a candidate for another arthroscopy, but there is little interest locally for the fear of an infection.
Current status is at a lull, requiring only occasional pain meds.
She is not supposed to use NSAIDS since she has had stem cell injections in the other knee for DJD.
Thanks

As a retired FP, recently working the ER and married to a sufferer of PVN for decades who has had two replacements, numerous synovectomies all preceded with radioactive gold injection beginning in the early 60s, I am seeking direction in management of what I think may be recurrent PVS associated with significant pain, intermittent swelling and occasional fluid. We have consulted with our orthopedist, an orthopedist at Southwestern Medical ans her FP. All seem to have no solution.Her last study was a bone scan with vague result.
Is there a consultant in the Southwest or do we need to seek an appointment with dr Tap?
thanks
Max G. Latham, MD

I have been recently diagnosed with PVNS but all the treatment options I have been offered are quite evasive, Is PLX3397 available in Australia yet? I would be very interested in learning more about it or even just giving it a try. Thankyou

I had my knee replaced in July of 2017 and was doing well until about the 6th month, when I was told I had synovitis. It was described as a growth of the synovial sheath "like a sea anemone" with finger-like structures. For the last month I've had crepitus and pain especially upon extension and it's getting worse I think. I was going to go to the HSS in New York to find an surgeon who specialized in arthroscopic surgery after TKR complications. I found this site. Am I pursuing the correct route? I'm 67, female, very athletic. I was SUPaddleboarding in August and now I'm in pain.

My boyfriend has been recently diagnosed with PVNS,and he have had a arthroscopic surgery in BeiJing ,China. I really worry the PVNS will recur,and I hope there is any drug like  PLX3397 can cure or prevent it. So, can you tell me how can I get the drug ,is it really effective？
Hope to receive your reply ,Thank you very much!

My daughter is 35 and has just been told she has pvns. In her right ankle. She has just finished nursing school so she is going to be on her feet a lot. Are there any trials going on in Chicago Ill.? She is a widow with 2 young boys so she really can’t go out of the state. Would really like to see her walk normal again.

I was diuagnosed three years ago and h av had two operations.One in the front and one in the back. My Doctor Haryy Temple here in Miami is very well versed in this disease but since I still have
now again in the back of my knee I am having second thoughts in the knee replacement.
Please advise of that drug that you say it has been very successful so that I can let him know
if he doesnt know already Thank you

About a year ago, I was diagnosed with PVNS of the knee. The condition existed for a length of time prior to the diagnosis. The pain is now chronic and I need a surgeon right away. I live in East Texas and I need help finding a competent, PVNS experienced surgeon. Do you have any suggestions on how to find a surgeon with PVNS experience? Please help ASPA. Sincerely, James M.

Hi my name is Mindy, in 2011 I had a tumor PVSN removed from my spine in MAYO at Rochester, in all removal from the pelvis which wrapped itself around my spine deteriorating many vertebrae's which were replaced by donor vertebrae, in all ut was bigger then a football. Since I've had had to have over a dozen lipomas removed. I'm wondering if these aren't actually PVSN tumors. My surgeries for removal & repair were very extensive. I now have Titanium rods in my back with other hardware. I'm currently experiencing more pains and having more removed next week. It took days to be diagnosed due to the location only the neurosurgeon at MAYO would treat it. I just wonder if its PVSN. I wish there was a way to know for sure

I was diagnosed with PVNS in my left knee 5 years ago. The first two synovectomies were front arthroscopic and had them six months apart. I had to make a career change knowing I will have this for life. Things were going fine for the next 4 years until this summer when the swelling and pain returned. The MRI shows that it has returned in the joint and is also wrapping around my hamstring. I live in the Milwaukee area and am seeking care at Froedtert and the Medical College of Wisconsin. I have been under the care of a sports medicine physician and recently an orthopedic oncologist at the same time. I was told today that my case is being referred to another oncologist as well. The first 4 years was flawless with the doctors and now I feel like they are not telling me something or possibly do not know enough about this disease. Any doctor recommendations in the Milwaukee area or a nearby state? I’m 35 and want to do this right. I’m thinking long term and have a long life to live.