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Colchicine Access in the USA
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Are you a United States FMF patient having trouble with accessing a suitable brand of Colchicine? We would like to hear from you, please message me here or at [email protected]
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blessed375 21 days ago | Originally written in EnglishI need Colchicine to survive and live a normal life. When I run out of Westward Colchicine, I may be forced to purchase it oversees unless the FDA hears us in the FMF community and allows Westward to re-manufacture it again. It is a sad day when the government can take away something so easily made and used for hundreds of years "just like that".
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robpleticha 21 days ago | Originally written in EnglishThanks Jen. I think a lot of patients in the US are experiencing the same issues and are hopeful that the FDA will hear FMF patients' concerns regarding only having access to one brand.
I hope that patients can have access to the treatments or brands of colchicine that are most effective in controlling their symptoms.
I think there are some really strong FMF patient advocates right now in the US that are battling to teach the FDA that rare disease patients needs deserve to be considered when regulating medication. If you want to be connected with them, let me know.
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emccabe 16 days ago | Originally written in EnglishI have the same problem as Jen. Once I run out (I have managed to get together a year's supply of West-Ward Colchicine), if West-Ward or other alternatives are not back on the market, I will have to try ordering a Canadian brand. I know that Colcrys does not work for me, for whatever reason. When I tried it, I had the worst outbreak of FMF of my life after just 2-3 months of taking Colcrys instead of West-Ward Colchicine. I am nervous that Canadian brands may also not work for me but it is going to have to be trial-and-error at that point. I am angry that I found something that worked so well for me (West-Ward) only to have it taken away for no good reason.
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blessed375 15 days ago | Originally written in English
Hi Erin -
I hear you. I am also terrified when my year supply is up. I participate in the FMF Yahoo Support group and many on there have stated the Odan brand is working for them. We can only hope West Ward is able to start making it again, or that Odan is an alternative for us. I am starting nursing school next fall (2012) and if I am having the acute attacks, I will not be able to move on. I am terrified. Plus, it is unfair for my children to see me screaming and moaning in pain that is worse than my child labor. We know what torture is being without Colchicine. I wonder if a member of the FDA had to experience one day of our acute attacks, how quickly it would be back for Westward to manufactur. When were you diagnosed? You can read my story in the "Meet" section. Blessings to you. -
blessed375 15 days ago | Originally written in English
sorry duplicate
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Heidi0321 12 days ago | Originally written in English
I live in NJ and like many of you.. I have just run out of my supply of colchicine. I'm not sure yet how I will react to Colycrs but I am worried about the change as I hear that many FMF patients have had attacks when they switched.
Quick question for you guys. Do some of you experience pleurisy during your attacks? How long does it usually last for?
For me.. Almost with every attack I experience pleurisy and that usually lingers on for 6-10 days.
I am so happy that I found this group! It's such a relieve to finally be able to ask questions, hear other people's experience and share the same frustrations.
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NancyS 12 days ago | Originally written in English
I have pleurisy attacks but also costo-chronditis. Sometimes it is hard to tell the difference because it hurts to breathe either way. I always go back and look at what I have been doing just before the attack. I got it after running the vacuum one time. Must have hurt my breast bone without realizing it.
Nancy -
blessed375 11 days ago | Originally written in English
Yes, I experience pluerisy in between my acute flares. I can usually tell where the FMF is settling in at. SOmetimes my lungs, sometimes my heart, sometime my lymph glands in my left neck area, sometimes in my brain even (there's a certain type of headache I get).
The worst and most debilitating ones are my abdominal area. Though, with Colchicine, all of these are very mild. Since you girls are female, I feel comfortable talking about this. When I was younger, I was getting terrible pelvic infections. (at least every 2 months) and spent a lot of time taking antibiotics. Doctors tried the "you must have these from your sexual partner" which caused a lot of conflict. This was before my FMF diagnosis. Now, I understand that each month when I was having my menstrual cycle, not all of the lining is shed. The "stuff" left over my body recognized as inflammation and my body reacted as such. Now with COlchicine, I haven't had one of those since : )
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