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Possible Breakthrough Experienced by OT Patient

Posted: Tue Mar 03, 2020 3:39 am
by Sharon Nichols
I am Sharon Nichols & have had OT for at least 7 or 8 years. I was diagnosed with Psoriatic Arthritis about 2 years ago & have been on 2 meds: Orencia infusions & Leflunomide. I have experienced a remission of my OTs entirely!! I just discovered recently while standing in line at the pharmacy that I was not experiencing my usual tremors. Now, mine are different from everyone else's so far as I know. Mine ONLY start if my put my weight on my right leg--always for 30 seconds or under, and they would begin in my right foot, travel up my leg, until my whole body was shaking. I found upon emotional upset, the tremors were much worse! I think mine started in my right leg because I have neuropathy in that leg from a pinched nerve + 3 surgeries at L4-L5. My tremors never ever started with my right foot and ONLY if my full weight was just on my right leg. I know this is different and weird compared to everyone else I have talked to with OTs.

Ok. Here's the big announcement! I stood for 15 minutes or more in line with my weight on my right leg before I realized I wasn't having the tremors. Further, I realized I had NOT HAD them for some time! I was on Orencia over a year, but still had the tremors. And the Orencia had not improved my PsA. After I was put on Leflunomide (25 mg) & was on it for 3 months, it kicked in & my Psoriatic Arthritis improved dramatically. In fact, my fibromyalgia went into remission too! I have had fibro at least since 1983. I called the U.T. Southwestern Motion Center (Neurology) where I used to go until I stopped because there was no effective treatment & spoke to them & told them of my experience & suggested that my doctor there should try a clinical trial using Leflunomide on their OT patients to see if it helps them as it helped me. I gave them my Rheumatologist's phone # & gave them permission to get my records from him to verify my treatment as I stated. I hope they follow up, but in the meantime, you should mention this finding to your Neurologist. It may mean a remission, a treatment, or potentially--even a cure!!

I am providing my email address so you can contact me & I will text you my phone # so we can talk. Please don't hesitate to contact me. I am not a nutcase or a sensationalist. I genuinely am in remission or cured.
<sharonfoxnichols@gmail.com>

Re: Possible Breakthrough Experienced by OT Patient

Posted: Tue Mar 03, 2020 3:44 am
by Sharon Nichols
I want to add that I feel better than I have felt in 30 years. I am 67, going on 68 in May. I have more energy than I have had in decades and am now going to the gym & walking & biking 2 miles a day, each. I encourage you to tell your doctor. If you email me, I will give you my phone number, which I give you permission to give to your Dr. so s/he can call me should s/he wish to.

I don't do pseudo-science or esoteric home remedies but rely on proven medicine for the treatment of any of my medical conditions.
Sharon

Re: Possible Breakthrough Experienced by OT Patient

Posted: Tue Mar 03, 2020 7:55 am
by Theresaann
I am truly happy for you. What have you done to alleviate the tremors of Orthostatic Tremor? (No doctor will call you, BTW.)

Re: Possible Breakthrough Experienced by OT Patient

Posted: Mon Mar 30, 2020 5:00 am
by golfnut
I'm in contact with my neurologist here in Sweden at the moment for a check-up. I'll mention Leflunomide to them and see what he says. Very interesting, thanks for sharing!

/the golfnut

Re: Possible Breakthrough Experienced by OT Patient

Posted: Wed May 13, 2020 2:29 pm
by Lake of the Woods
Thank you for sharing this info. I will look forward to more updates from you on this.

Peggy