3/21/2012 A quick update. After being on methotrexate for nearly 9 months, I finally feel I have reached a plateau (in terms of reductions in the size of the nodules). All and all, I have done very well with the trial. The pain relief was far beyond by expectations (near miracle, smile) But, over the last couple of months or so, I have had several small flare ups that lasted 1 to 3 days. I scratch my head thinking what may have caused it, as I had been doing marvelously well on the program. One thought I had, perhaps it was the chemicals I sprayed in the yard to prevent weeds may I caused the flare up. I experimented once eating some lamb, ugh, big mistake (not sure if the meat was grain or grass feed). And, I exercised with some light weights, and pay dearly the next day, around muscles impacted (limited localized swelling). This is a puzzling development, as I had been doing okay exercising, after starting the methotrexate trial. (will try again to exercise with weights, next month, to see if this was just a fluke) And finally, last week I took a Pneumovax (vaccine) shot.; there is just no question on this, vaccines of all types make my Dercum nodules swell (triple in size), and cause A LOT of pain and discomfort for a few days.
I hope this information helps the community. God willing, I will give an update next month. If you have any questions, please feel free to write.
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1/31/2012 Update on my methotrexate trial. Progress continues. So well, that it is harder to remember all the the swelling and pain Dercum's caused me. I can exercise within good reason, and walk for hours without any discomfort. I enjoy being touched, again (tears forming). The Dercum tumors/nodules have been hardened, and are extremely well defined, but oh so much smaller. I have discovered, if I take the weekly dosage of Methotrexate at night when I go to bed, the hardest period of impact (headache, drop in energy), the second 24 hour period after taking the med, occurs the next evening while I sleep. Hence, it is virtually like not having any adverse impacts to taking it (I just sleep through it, right?!!!). No down time, YAY!!! My person health care plan includes continuing this trial for several more months, and so long as I continue to make progress. If progress should slow down, my methotrexate dosage may be altered upward a bit, but I am close to max. planned. It probably is dreaming to think they all might eventually disappear, but until this test is fully played out, we won't really know.
As a personal note: I haven't lost any more weight, but I have lost significant mass around my knees, especially inner knees, where there were huge clumps of Dercums, and above my elbows, and outer thigh where clumps resembled "hotdog" shape strands. My understanding is those areas have lymph nodes, and its common for Dercum's patients to have most tumors in those areas.
Please feel free to contact me via personal message, if you have any questions. I promise to keep reporting on my progress. I am EXTREMELY encouraged.
10/2011 Update: I am pleased to tell you, my methotrexate trial is going very well. The swelling and pain from my Dercum's nodules/tumors is totally gone (well, so long as I do not eat beef and other red meats, I sampled some pork for a very special occasion during this trial to see if I really have an issue with pork and there is just no doubt, my Dercum's tumors react horribly to red meat, not just beef-which is the worst for me). During the last 4 months, my nodules have reduced in size (beyond the mere reduction due the inflammation around the tumor/nodules), and I have lost over twenty pounds (the heavy tumor mass area above inner knee, and elbow are significantly reduced and lighter). Funny I tried all last year to lose weight with absolutely no success, and now with the methotrexate, it is just seems to be"peeling off". Yay!
Dr. Emma Murad, in Norcross, Georgia has been wonderful throughout the process. She finds Dercum's to be very interesting, and consults with Dr. Karen Herbst (famous for leading knowledge of the disease and who I went to see in San Diego, before I could locate anyone in my state who would even see me) and will continue to do so. She is pleased with my results, but wants me to let others know their results may be very different, as there is so much yet to learn. I believe she would be willing to see others with this problem. I initially contacted her office because of their experience with immunological issues, and training at Emory (a highly regarded research institution, in Georgia)
My test will be expanded another 2 months. Will report back to you in December. I could not be happier or more pleased. I really think this is going to work.
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7/2011 I have just started a 4 month trial of Methotrexate (MTX). Will let you know how it goes long term. Within 24 hours I saw a huge reduction in swelling and pain. I have hundreds of small painful lipomas and angiolipomas, and about 10 marble size to golfball size.
8/2011. I have been on MTX for approx. 5 weeks now. It is much too soon to report any success or failure. But, I have observations to share. MTX greatly reduced the swelling around my tumors (lost 3 pounds the first week, and another 4 pounds the following 2 weeks, the MTX acted like a powerful diuretic might), and this has caused my pain to be greatly reduced. The Dercum tumors/nodules now are much more defined, likely because the softer inflammation that surrounded the tumors for years is nearly gone. The nodules now also feel firm, and where I thought I had a large tumor, I now see that it was actually a group of countless nodules (a little scary, and it is taking some time to wrap my head around; no one would have the patience to count them all, let alone create a graph ).
The MTX (which is taken once a week) gives me a bad headache, starting around 8 to 12 hours after taking the meds, that last about 24 hours, coupled with some weakness during that same period. This blessedly seems to be diminishing, a little bit, each week.
My first labs, a month after starting MTX, came back normal (for me, I have had high WBCs forever), so the meds were upped a tiny bit, and my doctor's plan is to continue me on the current dose for another several weeks. Upping the MTX slowly, over several months will give me my best chance of not having an undesirable reaction/side effect. Let's face it, people with Dercum's, by nature, are (likely) very reactive. I am committed to giving this the "college try".
I really hope I will have something wonderful to say when this trial run is done. Taking chemo meds is a drastic measure, even if it is low dose, and the thought of having do a liver biopsy one day, if this turns out to be a long term project, pleases me none. Feel free to send a private message, if you have any future questions.
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