Fortunately it has been a long journey.
Written by jazito, published 3 months ago.
Living with FMF for 45 years...
Christmas Eve 1968. I was doubled over with severe pain in my abdomen and was running a fever of 102 degrees. No amount of blankets could take away the chills and shivering as I lay in bed. My visit to the emergency room ended with a diagnosis of semi-acute appendicitis. This was followed over the next year with several more attacks some of which caused trips to the emergency room and some of which we just tolerated. On the fifth trip to the emergency room a friend of my wife's called in a surgeon who we then met with scheduling an appendectomy.
Healed up following the surgery and feeling good only to have an attack three months later. The surgeon said the appendici was infected, and had no idea why I still had pain in the same area. He sent me to an internist and we began a three year ordeal of testing. Testing when I was well, testing when I was suffering an attack or episode. Finally, after three years I asked to go to the Cleveland Clinic and he did make the arrangements.
At the clinic the testing was all done all over, unfortunately with the same results. After two years they basically told me they had no idea and do not come back. However, after further consultantion they agreed to do exploratory surgery. The good news was they found nothing, I pronounced healthy, the bad news they still had no idea what the problem was.
They started treating me with different drugs no of which worked and they finally said I had fevers of undetermined origin. Then after several more months they come up with Meditereanean Fever, for which there was no known cure.
I was referred back to my internist and he continued to work with me but literally had nothing left to do. I asked to be put on Cortizone, which he said would mask the symptoms which now were often comiong every 2 to 3 weeks. He said he would but asked for another week.
At the end of that week he said he just read an article in the medical journaly where a doctor in Vermont was treating a patient of his with Colchicine. I started taking it in 1976 and have been taking it ever since.
Now that the FDA after being paid $100 million by URL Labs, determined that this 3000 year old drug was never approved by them, and therefore not fit for consumption I have been on Colcyrs. Colcyrs is not the solution as I feel terrible, tired, weak and ache. It comes and goes but the bad days are now exceeding the good.
Written by jazito, published 3 months ago.
2 comments for «Fortunately it has been a long journey.»
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Please join our FMF support list. We can tell you how to obtain colchicine, not Colcrys. There are others like you who are having a bad reaction to this 'new' OLD DRUG, as you said. You might want to see the video I made and take a look at my blog.
Nancy
FMF Support mailing list:
fmf_support-subscribe@yahoogroups.com
Video by Nancy Sparks Morrison - Can Genealogy Kill You??? DNA and Inherited Illnesses:
www.youtube.com/watch?v=6wkggvPBhzY&fe...
Familial Mediterranean Fever blog - 'my story' w/ FMF, and LOTS of medical documentation, charts etc.
familialmediterraneanfever.blogspot.com/
Jazito hello
Welcome to the FMF Community. I think you live in the United States and what is unfortunate is that there is not to my knowledge an association with a medical committee that could meet your problems with FMF .
I read with great attention your testimony, it is characteristic of wandering experienced by medical patients your age, proof, my wife was in the same situation as you, fortunately, we live in France and have fortunate to have doctors who are familiar with this disease.
In addition, since 2006, we created an association, AFFMF (French Association of Familial Mediterranean Fever) which is very active with the primary mission of providing information by all means to the entire medical profession, patients and their families the FMF.
If you wish, you can visit the official website of the AFFMF that will show you that you are not alone and isolated with your illness.
affmf.jimdo.com/accueil/the-affmf-in-english/
For our information, can you tell us when did you take the drug Colcrys for the first time and if you have genetic testing done to confirm the FMF.
Regards,
Jean-Pierre TOYRE
Moderator and member of the French community of EURODIS FMF.
Member of the AFFMF