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Today marks 2 months since I began being treated for RP. I am now being treated with.... - 10mg Prednisone daily -1,000mg of Calcium citrate w/500mg of Magnesium (per NIH recommendations to help counter bone loss caused by the prednisone) - 400mg Plaquenil daily *NEW - 10mg Leflunomide daily...

This article just popped up my browser as a recommended read :( Is chronic pain something more people should accept...

https://themighty.com/2017/11/pain-acceptance-patient-response-vox/?utm_source=Facebook&utm_medium=VideoComment "The podcast prompted a backlash from people with chronic pain, who argued that saying a level of chronic pain is “acceptable” essentially abandons chronic pain patients. Rather than...

I am one month into my RP treatment.... -10mg of Predisone daily (though I did have to increase to 15mg daily for 6 days due to a sudden worsening of my nasal chondritis pain triggered by a stressful event) -400mg of Plaquenil daily (so far no side effects) -1,000mg of Calcium citrate w/500mg...

Multiple torrents of the film are available online. It took me a second to find it just now. Unfortunately it's just about impossible to stop people from doing this.

https://www.npr.org/sections/health-shots/2018/03/27/597159133/how-bad-medicine-dismisses-and-misdiagnoses-womens-symptoms?utm_campaign=storyshare&utm_source=twitter.com&utm_medium=social As she began to research her own condition, Dusenbery realized how lucky she was to have been diagnosed...

Sounds like me. For the past 4 years there has been numerous times when I find it necessary to sit on the floor inside a store, on the sidewalk, etc. Had to do it a couple weeks ago at my local natural foods store as they don't offer electric sit-down shopping carts.

Great to hear about your experience at the NIH. In my case doctors have in the past few months realized that my ME/CFS was a mis-diagnosis and that I actually have a rare autoimmune disease called Relapsing Polychondritis (RP). The NIH facility in Bethesda, Maryland has an ongoing RP study in...

This is a news article about a great stem cell focused blog I learned about. I highly recommend the blog as a great resource. "Back in his lab after a week of vacation, Paul Knoepfler slogs through backlogged emails: A 71-year-old woman with arthritic knees would like to know whether a stem...

https://mobile.nytimes.com/2018/03/15/health/genetic-mutations-diagnosis.html?referer=https://getpocket.com/recommendations "With a database of electronic health records and DNA samples, a team of scientists has found that 3.7 percent of patients in a hospital system carried a genetic variant...

Looks like liver is a great source of K2. I've been wanting to start consuming beef liver from local pastured cows but have been putting it off. If what you say is true I guess that's even more reason to start eating it. I can buy it easily so no excuses! I've never eaten liver so I'm gonna have...

No those blood tests were done by an immunologist after it was discovered I had a complement deficiency. The doctor was unaware I was experiencing episodes of auricular chondritis. I think he ran the tests because I had told him I had experienced some episodes of sudden shortness of breath where...

https://ipscell.com/2017/12/hope-hype-on-unpublished-huntingtons-disease-trial-splashy-news/ "The splashy news a couple days ago that there may have been a “major breakthrough” on Huntington’s Disease caught my eye. I was hoping that there was concrete reason for optimism such as a new paper...

Hi Lucy. Now that I am taking both Prednisone (10mg) and Plaquenil (200mg) daily I thought I would say hi and ask you how you've tolerated them. How many months did it take for you to see improvement from the Plaquenil? In regards to Plaquenil I haven't noticed any side effects whatsoever thus...

@Woolie (you wrote the following to me previously) "I'd be interested in hearing more about the relationbetween your ear/cartilage flares and your ME-like symptoms. Did one precede the other by a long time?" I was reading back thru this thread and realized I never responded to this question...

Yes I really do hope I can taper off Prednisone completely someday, but unfortunately many RP patients are forced to remain on Prednisone for years, even decades (for life). My doctor currently has me on the 10mg daily with the hope that we will eventually be able to taper me down to 7mg. This...

@Jonathan Edwards I see that a new paper published in January about RP titled: "Refractory Relapsing Polychondritis: Challenges and Solutions" has this to say in regards to the use/study of rituximab for RP. "Relapsing polychondritis has not remained on the margins of history with the...

I was thinking today that perhaps what Dr. B meant was that I may be a good candidate for IVIg because my genetic complement deficiency may mean that Medicare will pay for it since they cover IVIg for "primary immune deficiency". Just a guess.

Thank you @Jonathan Edwards for explaining that to me. I am aware of at least a few RP patients who have tried Rituximab. It's something I will ask Dr. B about.

Thank you so much for taking the time to look up Beneroya's website and letting me know about Gerald Nepom. As for detectable autoantibodies being found in people with RP... "Studies have shown that 33% of patients with RP had circulating antibodies of type II collagen in the active phase of...