lakjaw
Veteran
Reged: 11/22/02
Posts: 550
Loc: Planet Zartran
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I have been using a medication called Sedalgin Neo, from Bulgaria, which contains metamizole. I am currently writing from the hospital, where I have been for the past 12 days because my bone marrow went into collapse where my white cells were concerned. This unfortunate side-effect is why metamizole was taken off the US market in 1979. I want to encourage others not to risk their health by using this medication in any form. While I am not out of the woods, we are are least hopeful that I am going to survive.
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When trouble arises and things look bad, there is always one individual who perceives a solution and is willing to take command. Usually,that individual is crazy.
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chevygal
Veteran
Reged: 04/28/03
Posts: 504
Loc: Way down south
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lakjaw
I have no idea what that drug is, but I am so sorry to hear what you are going through. I say prayers regularly I hope it is okay to include you. Hope you get well soon. Please let us know how you are coming along.
chevygal
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toe
Pooh-Bah
Reged: 10/09/02
Posts: 1437
Loc: MidWest USA
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Whoa, I was rXed that in Poland. I was wondering why it is unaailable in the States. Glad I never took but one or two of them (they really didn't help me.) I am so sorry this has happened. Please keep us up to date and get those leukocytes back in order. Stat!
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"It's the end of the World as We Know it. . ."
-REM "and I'm seeking asylum in Canada"-toe
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Sky_Queen
Fly Girl
Reged: 12/03/02
Posts: 1967
Loc: Texas
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Lakjaw, how scary! It's been so long since we've heard from you....so sorry to hear you're in the hospital but I hope you're on the road to recovery? Yikes. Bad stuff, thanks for the warning.
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potatoboy99
Permanent Fixture
Reged: 02/04/03
Posts: 1211
Loc: Deep North (East)
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Wow lackjaw,that is really terrifying. I cannot imagine what you are going through. Best of luck for a speedy and thorough recovery.
Unfortunately there are side effects to many of the meds we take, and those of us who are, to one degree or another, self medicating can really do some damage. None of us can afford to be casual about the chemicals we put into our systems.
Information is very powerful, and there is no better source of info than DB. Thank you for posting this, lackjaw, hopefully sharng your experience will spare someone else gong through the same thing.
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lakjaw
Veteran
Reged: 11/22/02
Posts: 550
Loc: Planet Zartran
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Thanks to all of you who replied, and I'm glad that the person who was given a metamizole Rx in Poland didn't take it. On further research, I found that it is actually an NSAID (BIG no-no with my Crohn's disease), and that it does not take much use of it to result in leukopenia, and regular use over a relatively short period of time can result in agranulocytosis (neutrophil count under 100). If the resulting illness/infection is not immediately treated, one can rather quickly die. I was fortunate enough not to play my usual game of "wait and see" with this illness, but went to the ER within about 12 hours of fever onset.
I was in hospital for 22 days, and see the doctor on Monday for a followup visit and lab work - not exactly cutting edge medicine, but I've survived so far!
Ultimately, what is so upsetting about all of this is the fact that I had to resort to self-medicating because US physicians allow the DEA to practice medicine without a license, i.e., inadequate pain control, especially for those who have multiple painful, chronic, incurable diseases.
I'll climb back down off my soapbox, now, and hope that this disaster never happens to anyone else. (I also won't order meds from outside of the US, if I'm ever inclined to order meds again!)
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When trouble arises and things look bad, there is always one individual who perceives a solution and is willing to take command. Usually,that individual is crazy.
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chevygal
Veteran
Reged: 04/28/03
Posts: 504
Loc: Way down south
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lakjaw
From your post I gather you are at least on the mend. I hope you are.  I am glad to hear you didn't play the wait and see game like all of us tend to do sometimes. I couldn't agree more with you as far as the doctors listening to those that are in pain and not blowing them off or telling them to go see someone else. I hope you recoevery continues and you are back on your feet once again. Thanks for letting us know how things are with you and for the warning also. I did try to look up this drug when I read your first post about your illness but could not find anything, I will try again as I am curious to know, as well as my son in law is being tested this month for chron's and would like to educate myself as much as possible on this disease. Wishing you well
sincerely
chevygal
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lakjaw
Veteran
Reged: 11/22/02
Posts: 550
Loc: Planet Zartran
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Hi, Chevygal~
Here are some links to some of the abstracts you might find interesting: http://www.oc.ca.gov/hca/newsrels/2002/0613nr.htm
http://www.ama-assn.org/sci-pubs/amnews/pick_02/hlsa0624.htm
http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?cmd=Retrieve&db=PubMed&list_uids=12042592&dopt=Abstract
There are many more. Here is the Google link: http://www.google.com/search?hl=en&ie=UTF-8&oe=UTF-8&q=metamizole
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When trouble arises and things look bad, there is always one individual who perceives a solution and is willing to take command. Usually,that individual is crazy.
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intrepid1
Member
Reged: 01/24/03
Posts: 177
Loc: West Coast
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lakjaw~ Thank you SO much for checking in!  I was very worried. Even an otherwise healthy person can have a fatal reaction to this med, and it is a tremendous relief to know that despite your serious medical problems you were able to pull through. Thanks also for the links, that just about says it all. Needless to say, the Nolotil which was in my medicine cabinet has been destroyed. Please continue to keep us up to date. TC & GL -Pat
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No time for procrastination, but I'll get around to it eventually.
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lakjaw
Veteran
Reged: 11/22/02
Posts: 550
Loc: Planet Zartran
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Hi, Intrepid~
Sorry to be so slow about responding, but haven't been feeling all that well. However, about three weeks after my 22 day hospitalization in July, for the bone marrow collapse due to the metamizole (Nolotil), I had to return to the hospital for a short hospitalization, due to a raging kidney infection. I'm happy to report that my white cell count was appropriately elevated, showing an excellent response to infection, so while the metamizole was dangerous, I caught it in time, and got appropriate therapy.
The Crohn's, fibromyalgia and migraines (common and cluster) are wearing me down to a very thin nub, which is why I've been "gone" for so long. I returned today, to look for info on some of the sites I used to use, in order to get an adequate supply of rescue pain meds for the migraines. A friend (whose father and brother are both docs) has very kindly supplied me with a boatload of triptans, but I still need Fioricet, since one can't take triptans too frequently. That's what I was looking for today, and I hope I found a reliable source.
Best to you and all the rest,
Lakjaw
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When trouble arises and things look bad, there is always one individual who perceives a solution and is willing to take command. Usually,that individual is crazy.
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Sky_Queen
Fly Girl
Reged: 12/03/02
Posts: 1967
Loc: Texas
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So good to hear from you Lakjaw! It's me (Legitimate) I changed my name as you can see. I'm really glad for an update, I think about you from time to time and wonder how you're doing. Sounds like you're hanging in there and I hope you get your Fioricet, let me know if you need anyone to help do some researching of OP's for you, I'm happy to help!
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lakjaw
Veteran
Reged: 11/22/02
Posts: 550
Loc: Planet Zartran
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Hey, there!
Glad to see you Legit/FlyGirl. Have you been taking flying lessons/gotten pilot's license, or what?
I've been over in the "who offers it/how much" thread, ranting about bounced-back emails, and finding these "cheap" meds sites all seem to be related to a web construction site in California. Hell! I could set up a site through them, offer meds, look perfectly legit, and take a vacation in BoraBora on the backs of people in pain. However, as I also wrote, it's been many months since I've ordered anything, and I'm far too nervous and upset (as well as having unending migraines). I really should just hush up and wait, but the possibility of having poured over $100 down a rat hole is really upsetting me. I had planned on using one of the online consult places, but it seems that the ones which were so promising a few months ago, are now either circling the drain or gone. *WHY* is it that the medical industry in the US thinks it just fine for people to suffer pain, and treat us like dirt because we want relief from it? The physicians of my father's generation are gone, and now all we have are body-mechanics who are only interested in the bottom line, no matter the state of the patient.
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When trouble arises and things look bad, there is always one individual who perceives a solution and is willing to take command. Usually,that individual is crazy.
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prettyday
Threadhead
Reged: 02/09/03
Posts: 965
Loc: Coastal Sage Scrub
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Thank you for coming back...worried bout you, dear!!!
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First they ignore you, then they laugh at you, then they fight you, then you win.
- Mahatma Gandhi
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lakjaw
Veteran
Reged: 11/22/02
Posts: 550
Loc: Planet Zartran
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Thank you! Glad to be back, although I need to leave off worrying like a newbie. It's lovely to see all of you here, as well. 
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When trouble arises and things look bad, there is always one individual who perceives a solution and is willing to take command. Usually,that individual is crazy.
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