Posted on: Dec 26, 2015 10:44PM
Hi I was doing some research on Le and I came across ketoprofen. Apparently there is a trail. I was wondering if anyone was on the trail or using the drug and what they thought.
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Oct 23, 2018 06:13PM herb wrote:
I am going to ask my onco about this on Thursday. https://scopeblog.stanford.edu/2018/10/22/new-hope...
Nov 3, 2018 03:26PM anna4969 wrote:
I sure have and have been on it now for about 18 months. I read about Stanford's trial a a year and a half or so back and asked my onc if we could try it. He said yes. He had the hospital pharmacist call Stanford to try find out what dose they were using for the trial and they would not release that information, so we just kind of winged it. I have actually been doing quite, quite well on it. Prior had constant discomfort, very frequent flares and more infections than I care to remember for 6 plus years. It has really made a big difference. The only very upsetting issue is that Ketoprofen, in certain milligrams, was discontinued so my pharmacist has been searching high and low all the nearby pharmacies to continue getting the drug for me. So far, so good but she has told me the quantities are really diminishing so much that this last fill was only 1/2 the prescription. I was going to then go the mail order way thinking I might have more success and, I got a letter that Orudis is no longer available. Like with all NSAIDs there are some risks but I have found it to be, by far, the easiest of NSAIDs to tolerate and I have prescription Ibuprofen and prescription Naproxen.
This is a recent article about the trial:
and the article published in JCI Insight
Please let me know if you have more questions, happy to answer.
Nov 3, 2018 05:37PM Zillsnot4me wrote:
what dosage worked for you?
Nov 4, 2018 11:56AM anna4969 wrote:
The prescription is written for 50mg 4x a day. I generally only take a total of 100mg however.
Nov 7, 2018 07:42AM hugz4u wrote:
Anna thanks for educating us. If you have time please drop in every so often to give us a progress report as you are paving the way for us. Much appreciated.
I read the link and below it is another article on using nanofibers to reroute lymph vessels. So interesting. Stanley Rockson is very dedicated to lymphedema. I heard him at a conference and he’s brilliant.
Nov 5, 2019 03:14PM mellee wrote:
Nov 5, 2019 06:16PM MinusTwo wrote:
I was glad to see the bump.
Anna - what's happening? Anyone else discover anything new?
I agree, Stanley Rockson is someone who REALLY cares about LE and goes all out both researching AND educating.
Nov 10, 2019 06:44PM anna4969 wrote:
Just decided to check this site as I haven't been on for awhile.
So update on the ketoprofen. Yes, I am still on it, but like I said, the supply is extremely limited now and I am getting the residuals of what still be available. It is NO longer being made. It makes me very very distressed because I can whole-heartedly say that it is the only NSaid that has worked for the discomfort and swelling. Once the remaining supply is gone, back to discomfort, and hopefully not, infections.
Anyway, the medication has done wonders for my arm. I can tell when I take a month or so break from taking it(I like to do that because I know NSAIDS are harsh on the kidneys), I notice the heavy, aching pain return and the increased swelling. I did have another cellulitis infection last July(2018) that behaved a bit more unusual from those I had in the past, but that has been the last one I have had. And...I have been bit and scratched by my kitties, so something has changed for the better as a whole, I believe.
I do not know of any additional trials out there for medications, but will watch this thread as well.
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