Hello MP group. By the miracle of tagging I was contacted by kanaazpereira on her Colcrys (colchicine) inquiry, above. I am in another rare disease group, familial Mediterranean fever, and colchicine is our gold standard treatment and therefore I know a lot about colchicine and its availability and its sources. FMF patients take colchicine everyday. If any of you in this group need access to colchicine, contact me because I have had to compile an exhaustive list of colchicine resources for our patients. Is colchicine taken by many of your patients or only a few? If it is an important treatment for MP then I will provide you with exhaustive information on colchicine. I do not see a way to leave an attachment with this message so if you want these documents send an inquiry to me. The FDA has made the US the worst country in the world for colchicine access. Colcrys is a brand name for one brand of FDA approved colchicine. The maker of Colcrys jacked up the price 50-fold. A second brand Mitiage got on the market but maintained the high price. Colchicine is cheap everywhere else in the world. The insurance companies – many of them – have stopped reimbursing colchcicine because of the unjustified price so many patients are led to believe that they have no choice but to pay these hyperinflated costs out of pocket. Not true. Most FMF patients now get colchicine – legally – from Canadian online pharmacies with a valid Rx. Instead of $5,000 /yr out of pocket they will pay about $300-$500 out of pocket. If a patient goes over the border into Mexico they can get the same thing for about $90 – this is legal and the Mexican colchicine is a legitimate brand. Colcrys has a very high adverse response rate in FMF patients. But we take it every day, forever. For patients taking it sporadically the response may not be the same. I have a list of Canadian online pharmacies where our US patients get their colchicine with contact info and comparative prices. Contact me for any further info about colchicine – and our best to y’all from the FMF community. [ This site blocks e-mail addresses if it is the first time you post so I can’t leave my e-mail address – if anyone wants further info post a message here with info on where I can send it]
Janine Jagger

My gastro dr, has me on colcrys .6 1x daily and it controls the MP. My insurance co. Now refuses to cover it. My dr, read studies showing that colcrys controls the MP and I am grateful for that, please send me info on how I can obtain this medicine legally from Canada and I will get a written script from her, thank you very much and hope you do well controlling your FMF. Susan

Susan, I need an e-mail address to send you the info as an attachment.. This forum will not let a new member post an e-mail address until after the 3rd message and I’m only up to 2 now. So if you respond with your e-mail address I can send it to yours from mine. Have you posted more than twice? I have an idea. I am going to try to trick the filter. Darn that’s a smart filter – I just tried and it didn’t work. I will post another message here until I reach the threshold.
JJ

I hope I’ve reached the magic number let’s see. Nope, one more try coming up. JJ

Susan, Here is my e-mail address
Janine Jagger

Maybe this will work.

I think I got past the filter, many thanks

Welcome back to Connect @sante! A sincere thank you for all the support and information you are offering; I’m sure that @susierq111 appreciates it as well.

You will both notice that I removed your personal email from this public discussion. Posts to the discussion board are public, and we don’t want you getting unwanted spam. trolls, etc. We recommend sharing personal contact information by private message, as it is a secure, private option.

Here’s how to send a private message:
1. Click the member’s @username.
2. Click the envelope icon in their profile.
3. Write a subject and your message.
4. Click Send Message.

I also wanted to let you know that you can share websites publicly, and you will be able to do so after posting 3 messages. We restrict new signups from being able to post URLs to stop spammers and protect the community.

@sante, you’ll notice that Connect has been reinvigorated and is an active community again. And, we’ve got more updates and improvements coming soon, so do stay tuned; we’re glad to have you back!

My husband was diagnosed with mp last September and now found a new doctor who said he needed a blood test to show he truly had this disease. The blood test has come back negative. Now when we were in the hospital for same symptoms they told him he doesnt have it or maybe never did or maybe after being on meds it just wont show. They told him he no longer has diverticulitis or diverticulosis. They are trying to tell him they think he has severe ibs but are doing nothing to help.

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Hi again everyone! Well I had my surgery to remove the abdominal masses and they turned out to be lipomas. They were both benign. I have also been diagnosed with central sleep apnea so I was prescribed an ASV machine which I use every night. My MP is still active. I rarely have any appetite at all. So I force myself to eat. They have taken away several of the meds I was on with the intent of that being the reason for always being tired with heavy limbs, fatigued all of the time with no relief from a good nights sleep. Any advice on these continuing conditions? There are days when even getting out of bed is a chore. It’s getting very frustrating to not get any relief and for the doctors to not be able to get it figured out. I go for an electromyoggraphy and nerve condition test this week. The pain management doctor mentioned peripheral neuropathy or peripheral radiculopathy. The appt is this Tuesday so I will let you know how that turns out. Has anyone had these concerns/symptoms that you are dealing with?

Good luck and keep us posted. I wish I had an answer for you. My MP comes and goes and I live in fear that someday they will say oh, we are sorry, but it is now cancerous and no chances left for me.