Familial Mediterranean Fever (FMF) Community

Meet, discuss & support other patients or families living with Familial Mediterranean Fever (FMF). Contribute to topics, or just share what's on your mind

robpleticha
moderator

Colchicine Access in the USA

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 robert.pleticha@eurordis.org

I 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".

robpleticha
moderator

Thanks 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.

I 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.

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.

sorry duplicate

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.

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

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 : )

i also live in nj and cannot find a dr who knows anything about FMF. do you have a dr who is knowledgeable in this area?

I do not have a doctor listed for NJ. If you find one, please let me know so that I can keep a record of it. I am sending the only doctor I have in NYC which MAY be close to you. This doctor was recommended by a member of the FMF_support group at yahoo:

NEW YORK CITY

Anyway, he is respectful, knowledgable and as far as I'm concerned, a major storke of luck for me!

Dr. Jonathan Samuels
NYU Hospital for Joint Diseases
246 E 20th St
NY NY 10003
646 356 9400

Nancy

Hi. I am the mother of 2 children with FMF. Our son was diagnosed at 7 yrs old, and prescribed Colchicine along with Phenobarbitol (to control the side effects of Colchicine). The doctor started him on a dosage of .6 mg and to increase at intervals. We noticed that when he began the medication he began to urinate more frequently right away. We were told that he would have bladder spasms due to the medication and that the Phenobarb would control these effects. When his dosage of Colchicine went up to .9mg, he became incontinent. I was told by the doctor and manufacturer that Colchicine has never caused this to happen before or at least its never been reported in (child) patients before. It's been over a year since he began treatment for FMF. And he is still taking medication for FMF (Colcrys 1.2 mg) and Oxybutnin 10mg ER for the incontinence and side effects of Colchicine. My question is, has anyone else experienced this kind of side effect of the drug? And our son's Urologist isn't sure what to expect since he's never treated a child with FMF. Will the incontinence resolve as he gets older, or adjusts to the medication? Any info is appreciated. Thank you.
Tauna

Colcyrs is not working for me. I am tired, achy and just plain miserable. Did not have these symtoms with Colchicine. Would like to hear some success stories on the sourcing of Colchicine from outside the US.

Please join the FMF support group at fmf_support@yahoogroups.com!

Hi everyone, I am new to this site. I was diagnosed in 2000 and was prescribed 3 doses daily of .6mg of Colchicine. Over the years I have tried to scale back as much as possible on the medicine while still keeping my symptoms under control. I now only take it when I feel the symptoms coming and most of the time I am able to avoid full blown attacks. My doctor has mentioned that there is something going on with the availability of Colchicine in the US. I had a pretty good stockpile until now.

What should I know about what I will get in the US? Is there a reliable substitute? Is is a cost issue?

robpleticha
moderator

Hey Michael,
I'm Rob and I'm a community manager with EURORDIS.

The only issue with colchicine in the US that I am aware of is that the FDA has restricted US sales access to 1 brand: Colcrys.

Read more on the FDA website: http://www.fda.gov/Drugs/GuidanceComplianc...

Is colcrys/colchicine affordable on your insurance? We have heard from a lot of people that noticed a big price increase, and decreased efficacy when being forced to change to the colcrys brand of colchicine.

I find it a bit troubling that you only take colchicine when you feel symptoms coming. Did your doctor ever warn about the risks of amyloidosis in future? Amyloidosis is a serious complication and can be a result of not taking colchicine regularly. Source: http://www.genome.gov/12510679

Please talk it over with your doctor. Thanks for joining. Write me any time with questions.

hi. i'm new in this group. i have been staying for two months in boston and my medicines ending now. i want to buy more colchicine, but pharmacies don't sell without a prescription. i need it but actually i don't know what to do to try to take an appointment with a hospital and i'm waiting now to hear about it. i really don't know how to go to a doctor in usa exactly and i bought colchicine online but the delivery process is very long like 3 weeks. if i don't use this medicine i know maybe I can have serious fmf attacks so I need help now immediately. is there anyone to give me a colchicine in boston or sent to me immediately. i'm so happy and i can pay money for this medicines

robpleticha
moderator

Hi Ebubekir,

My name is Rob and I'm one of the community managers with EURORDIS. Colchicine is available in one brand - Colcrys - in the United States and does require a prescription.

How were you getting colchicine before you came to Boston? Can someone send it from there?

I know of others that order colchicine online, I'm surprised it takes 3 weeks. Can you look for another pharmacy that might be able to do an express order? I think you do need a prescription though.

Here is a Yahoo group with many people from the United States on it, perhaps they have more knowledge about the issue: http://groups.yahoo.com/neo/groups/fmf_sup...

Are you just on a tourist visa? Do you have any kind of travel insurance?

ebubkir, Hi, I just saw your message for the first time. You probably found your colchicine by now. If you still need information contact me at fmfpatients@gmail.com. I have a lot of information on colchicine sources.
Janine Jagger

Spooky,
I can provide you with information on colchicine in the US. Most FMF patients in support groups get their colchicine from Canadian online pharmacies. Many patients have had adverse reactions to the FDA approved brand of colchicine in the US. We have had to figure out how to get access to colchicine from other sources. Most doctors do not know this. If you still need information, contact me at fmfpatients@gmail.com

Is it really that hard to get some Colchicine in the States ?
Cant you just go to your Doctor and ask for a Colchicine Reciept?

robpleticha
moderator

Hi Hardy,

It is not hard to get colchicine in the United States. Doctors write prescriptions for colchicine for people living with FMF all the time.

The problem is that when someone takes the prescription to the pharmacy, they only get 1 brand of colchicine: Colcrys.

A few years ago, people could get a number of different brands of colchicine that were for sale in the United States. Now it is only one kind: Colcrys.

Where are you living and how are you managing FMF?

FMF is a life sentence, not a death sentence. But I see how the Rx companies are targeting a few rare individuals on the planet, such as myself, for monetary gain. I am an adoptee, born of a mother of Spanish heritage and a father of Jewish heritage. I am white technically, but the cells in my body beg to differ, diagnosed by genetic differential , but I tan well. Here in the states they call me the white Mexican. Pale in the winter, tan in the summer. I'm on Colcrys 0.6 BID for life, it seems to help among other maintenance meds. I am relatively healthy unless a flair up occurs. I'm not a drug dealer, most systems are screwed up. If I find a legitimate source I will share. Banding together is the best way. We need this medication, just put pressure on them. All with FMF band together globally.

Robert, I don't know how to contact you personally, so I do this. I am a medic of 16 years. Wise in the ways of pharmaceuticals and treatment regimes. I Missed 1 dose of Colcrys a week ago and suffered horribly, I will never do it again. I keep at least 2 doses if I'm on excursion. I am also a molecular biologist with concentration in the field of organic chem. Book, and lab knowledge doesn't help much when you are the subject.

Wombat,
In regard to your comment "If I find a legitimate source I will share",
the FMF community in the US has put a lot of effort into finding all possible sources of colchicine - both for patients in the US and patients in all countries. FMF patients have different responses to different brands of colchicine so patients in the US are at a particular disadvantage because there is only one brand on the US market and a high adverse response rate to it. Your doctor can prescribe colchicine from a Canadian online pharmacy - it is authorized - we need to know the regulations because after the FDA approved only one brand, FMF patients rely on colchicine resources outside of the US. You have access to multiple brands of colchicine from canamericaglobal.com. Also, patients from any country have access to multiple brands from idispharma.com. Both of these sources require a Rx from your doctor. I have some information to send you to explain all this if you send me a message at: fmfpatients@gmail.com

I have been taking Colcrys for about a year after being on Colchicine for about 6.

Colcrys is completely ineffective for me. I have brake through pain almost everyday and once a month huge flare up that can leave me taking days off work or not being able to function.

My Joint pain is also much worse.

My Gastroenterologist states that I can obtain the Colcrys from Canada but I am wary to.

Has anyone done this? I am curious as I am going back to my Doctor next month.

Your GI dr is right. E-mail me at fmfpatients@gmail.com and I will send you some documents that will give you some instructions on how to get other brands of colchicine.
Janine Jagger

Robert, I have 2 sons with FMF and we live in the US. i just recently realized that Colcrys did not work for them. in the past 2 years or so since we switched to the new brand we upped the does to 3 per day and still get attacks almost every week. just when the doctor was about to start looking into alternate therapies i found your article about trying other brands. I ordered the Turkish brand (one package was delivered by a friend who was traveling) and the second package is waiting for custom clearing-I just supplied DHL with supporting documents and hope it will clear soon. i started the kids on the new brand this past Monday (dropped on pill a day: one child takes 2 and the other takes only one). so far no attacks...i'll post updates in the next few weeks on the status of the delivery and on the effect on the kids.
history: my eldest child had FMF probably by age 1 or 2 but was not diagnosed until age 7-that was early 2008-, by then attacks were weekly and back to back(he was in bed all times for weeks). we started colchicine and he was fine on one pill a day (he would have minor attacks maybe once or twice a year)...he missed lots of pills because we did not monitor very closely. i started noticing more attacks immediately after switching to the new brand as he started to get more serious attacks; I dismissed the thoughts of the new brand to be the cause as i thought all brands had the same chemical formula and also because the child kept missing dosages (with our best effort to keep an eye) . his doctor suggested we go to 2 pills a day since the boy is older and he gained lots more weight. attacks kept coming and we always but we blamed it on the kid for missing his pills. not until few months ago when attacks became weekly thing and his GI system was messed up: ulcer and high triglyceride and high cholesterol and anemia. he is now on 3pills/day and still gets attacks. i was not impressed with his doctor's response (we used to live in New Jersey and saw a Philadelphia specialist but now we live in North Carolina and could not find anyone with FMF experience) ...so i started researching and found articles on this site referring to trying other brands. my younger son started to have FMF symptoms few years ago and we immediately had hsi DNA tested and he was put on Colchicine. same thing he was fine on one pill until the brand change and now he is on 2/day...luckily he is more fortunate than his older brother as he is not having any GI issues (i believe this is only temporarily). i switched to the Turkish brand this past Monday: elder boy is taking 2/day and younger is 1 pill/day. I am hopeful both can go back to 1 pill/day. but we will see in few weeks. side note: my third son-1.5 years old- started to have a red rash on his legs but no pain...will be taking him to see the doctor in few days but i have a feeling it is an FMF related....sorry for the long post but i am hoping it could help someone else.

Hi Salzouby, Your story sounds like many others. Fortunately, you realized that the brand of colchicine could be the issue because this is a solvable problem. I did the documentation of differences in brand response - it is our top issue in treatment. Way too many patients are being put on the "biologics" (anakinra, Ilaris, Enbrel) when in fact they are perfectly responsive to colchicine but no effort has been put into finding a brand that has a satisfactory response. Be aware that for all brands of colchicine (available outside the US) there is still a 20% chance of unsatisfactory response and you still might have to do brand switching. Also, each of your sons may respond differently to different brands - they may end up on different brands. Most of us in the US order from Canadian online pharmacies - many from canamericaglobal.com where they carry several brands which allows patients to switch if necessary (Turkish being the least expensive - insurance does not cover it). Please e-mail me at fmfpatients@gmail.com and I will send you some information that the patient community has compiled for new patients to get the best therapeutic response. Most physicians don't know anything (literally) about FMF - others just have "book knowledge" but no experience with it. The patient community has a wealth of experience compiled by hundresds of patients worldwide so it is very valuable to connect to the patient community. FMF is very treatable so most likely you can get an excellent level of symptom control for your sons - but it does take some trial and error. Please e-mail me. Janine

hello , well, am getting my colchicine from Israel, its way cheap and effective, like 6 $ per 30 tabs, my problem is fertility, and i have no clue if there is any help for this, i have no isurance coz i cant afford it, and i cant afford doing IVF , if anyone knows what to do or there is any help for patients with FMF please tell me and let me know what to do, i love children and i want to have my own before its too late, if anyone can help with information ill be so grateful

Mustafa, It all depends on what country you live in. There are different options in different countries. Although some FMF patients can have fertility problems, the FMF is not likely to be the cause of those problems. The rate of fertility problems is about the same in FMF patients as in the non-FMF population. But in terms of help available - it depends where you live.

Your issue with fertility is not the colchicine or medicine, it is the fevers that you have if not on the medication. It destroys the sperm. My wife and I adopted 3 children as my low sperm count would not allow her to get pregnant. After I began to take medication and the fevers were controlled my sperm count increased and after 17 years of marriage she delivered our Youngest daughter.