Aa
Sorry to hear about your diagnosis. My son who is turning 19 this month has FMF. He suffers from frequent vomiting, stomach pains,& arthritis in various joints when he has an attack. He does take colchicine and is in the process of discussing with his doctor the possibility of going off the medicine because it has been a while since his last attack. He is interested in natural/homeopathic treatments at this point in his life. How were you diagnosed? What age?
Hi Ive been told I may have FMF....
I'm looking for someone to talk to who has this so I can ask if what I sufer is the same .
Any help ...
I'm looking for someone to talk to who has this so I can ask if what I sufer is the same .
Any help ...
Yeah, I heard about the House episode too from the FMF support group on Yahoo that I belong to. I havent heard of anyone sweating blood, but probably due to renal impairment, I guess. But to answer your question, yes, it is chronic and no known cure. Some people do get kind of a remission like effect with the Colchicine, but Julian has not.
He had a really bad flare last week for 3 days, vomiting, etc... it was awful! Do you have FMF?
Melissa
He had a really bad flare last week for 3 days, vomiting, etc... it was awful! Do you have FMF?
Melissa
There was just a House episode about this! It was on this past week. The guy was sweating blood. Yikes! He acted like it was curable. Is it chronic?
Alex,
Sorry to hear about your FMF diagnosis. My son was diagnosed at age 4! I am also glad to hear that you dont have any further attacks since you take colchicine, my son is not like that.
Many people have different issues with FMF and Jules is not controlled completely although he has been on colchicine since age 4. As for developing amyloidosis, it can still develop with colchicine use, we are proof of that! But with the meds you can slow or even reverse the amyloid. And I DO MAKE SURE he takes his medications DAILY!
Sorry to hear about your FMF diagnosis. My son was diagnosed at age 4! I am also glad to hear that you dont have any further attacks since you take colchicine, my son is not like that.
Many people have different issues with FMF and Jules is not controlled completely although he has been on colchicine since age 4. As for developing amyloidosis, it can still develop with colchicine use, we are proof of that! But with the meds you can slow or even reverse the amyloid. And I DO MAKE SURE he takes his medications DAILY!
Yes I do have FMF. Amyloidosi only happens if you don't take your medication. I was first diagnossed with FMF at age 35 which is very late. Usualy this disease is diagnosed during the teens. I have two of the milder genes which is why the onset was so late. I take colchicine three times a day .06mg each for a total of 1.8 and have not had one attack since then. Annual check up comes back great with no issues. I have a great Dr. with FMF as his specialty. You can live a normal life without any complications as long as you take your medication daily.
If you have FMF, you can develop amyloidosis. It is the "bad" side of FMF, can be deadly to affected organs. Do you have amyloidosis?
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