Susierq111, I was linked to this group because the topic of colchicine came up in the MP group. My own rare disease is familial Mediterranean fever (FMF) and colchicine is our gold standard treatment and we have to know as much as possible about it. So I will jump in here if my experience with colchicine is useful to this group. The FDA has disrupted access to colchicine in the US as a result of incentives lavished on the drug companies – granting proprietary status in multiple special programs (orphan drugs, unapproved drugs). As a result of these programs only 2 brands of colchicine are on the US market and they have sustained a price increase that is about 50X higher than before these proprietary programs were implemented. In Jan of 2017 most insurance carriers stopped coverage for colchicine because of the unjustified hyperinflated cost – leaving patients to pay the hyperinflated price out of pocket. So that might be a situation that you are in.
There are 2 things to know. 1)The brand of colchicine called Colcrys (also called Prasco) has an extremely high adverse response rate of about 80% in FMF patients. So if you are taking Colcrys and you are not satisfied with the benefit you have gotten from it, then it is suggested to switch brands to Mitigare which does not have an extremely high adverse response rate. 2) However, if your insurance is not covering colchicine, and you have high out-of-pocket costs, many of our patients get their colchicine from Canadian online pharmacies. Paying full price out of pocket from one of these pharmacies will cost about 1/10 the out of pocket cost of the US brands. With a valid prescription from your physician this is within FDA regulations; it is legit and legal. We maintain a list with multiple sources but I will give you just one here: http://www.bigmountaindrugs.com.
One more point that may or may not be relevant to MP. Colchicine is taken different ways for gout vs FMF. For FMF we take colchicine every day to prevent periodic inflammatory attacks. Once an inflammatory attack begins it cannot be stopped by taking a high dose of colchicine. Colchicine effectively prevents attacks if it is taken consistently every day. Gout is different. When a gout flare begins gout patients start taking colchicine in escalating doses until the flare subsides. So gout patients take colchicine sporadically while FMF patients take it continuously. I don’t know which you do for MP but if you take it like gout patients I suggest that you try taking it continuously for enough time to see if it affects the pattern of attacks. I say this because there are now some suggestions that gout patients might benefit by taking colchicine as a preventive, like FMF patients. So it is worth a try to see if the way you take it has a different efficacy.
Finally, dose is an issue. With FMF symptom control is proportional to dose of colchicine. If your disorder is inflammatory then this principle probably relates to you. Often colchicine is under-prescribed, and if so there will be minimum benefit. With FMF, adults will get maximum symptom control at 1.5-2.0mg per day, and 2.5mg is the recommended upper limit. For the lucky patients who respond well to colchicine, it is an amazing drug – 4,000 years old. There are no long-term side effects. It can be taken for years and years with no harm. It comes from the seed of the autumn crocus so it even brings us beauty.
If you would like more info on colchicine feel free to send me questions or pop over to an FMF group.