posted
I couldnt find this drug any cheaper. It seems there is no generics on the market yet -hence its why its so expensive
Posts: 856 | From MA | Registered: Jul 2009
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posted
It is a very difficult med to tolerate. I would agree with dmc in checking to see if you can get a weeks worth to start and see if you will be ok on it.
I'm doing it now and it is very expensive.
-------------------- Never, Never, Never give up! Posts: 395 | From Connecticut | Registered: Nov 2008
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Rumigirl
Frequent Contributor (1K+ posts)
Member # 15091
posted
dmc and jenny76,
That's a great idea to try one week of it to see if I can tolerate it. I'm sure the nausea is tough!! But that I would hope I could just tough out with anti-nausea meds. It's the migraines that would be the hardest, if it increased the intracranial pressure, which it can. I'm very sensitive to things that do increase that.
Jenny76, did you get it from Infuserve? Did you pay the whole $4,800 per month plus shipping? And, do you feel it's worth it? It may be too soon for you to tell.
I will try contacting the company to see if there is any way to get it cheaper.
Posts: 3771 | From around | Registered: Mar 2008
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posted
Hi Rumigirl, no I get it from my LLMD, I buy meds from him. I only purchased 6 doses to start and could only tolerate 4 before he had to pull me off and give my body a rest. The anti-nausea meds were every 4 hours and they didn't touch my nausea. I was SO sick that he had to pull me off. I was getting dehydrated. I will try again in another week.
I get my Glutathione from Infuserve....they are really great and reasonably priced. It is one expensive med!
-------------------- Never, Never, Never give up! Posts: 395 | From Connecticut | Registered: Nov 2008
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Rumigirl
Frequent Contributor (1K+ posts)
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posted
Jenny76,
So was the Tigecycline + supplies $160 per day from your LLMD? That's the price that Infuserve charges.
Wow, it sounds like the nausea was intense! I had horrific nausea last month from rocephin when it caused gall bladder sludging, so I got a taste of it then. It was hard to take.
It's a good idea to try a small number of doses first to see if it's tolerable. A number of people have said that it took quite a while before it was tolerable.
Posts: 3771 | From around | Registered: Mar 2008
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CD57
Frequent Contributor (1K+ posts)
Member # 11749
posted
Rumi I get mine from the place you mentioned. I dont think you can get it any cheaper.
But my LLMD doesn't RX it for every day. Are you going to do it every day? For how long? This is a TOUGH med. Someone on here did it for four months and I was astounded!
Posts: 3528 | From US | Registered: Apr 2007
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Rumigirl
Frequent Contributor (1K+ posts)
Member # 15091
posted
CD57,
How often do you take it? And what other abx are you on at the same time? And for how long? My LLMD has only rx'd it once before.
I could probably never do do it everyday. I can't even do rocephin every day--I can do only 4-5 days at a time for that! I'm too sensitive.
[ 01-14-2010, 12:08 PM: Message edited by: Rumigirl ]
Posts: 3771 | From around | Registered: Mar 2008
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Rumigirl
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Member # 15091
posted
up for more replies.
Posts: 3771 | From around | Registered: Mar 2008
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How often do you take it? And what other abx are you on at the same time? And for how long? My LLMD has only rx'd it once before. I know someone who did it every day for 3 months, twice a day, and rocephin once a day simultaneously!!
holy crap I wish to know how the heck they mangled their insurance to pay for that. Or were they just really rich? - if i spend all of my salary just on this I still wouldnt be able to afford it (and I do have salary high enough that it doesnt let me have any state sponsored insurance plans)
Posts: 856 | From MA | Registered: Jul 2009
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Rumigirl
Frequent Contributor (1K+ posts)
Member # 15091
posted
Coltman,
I'm in the same boat. Because I have private insurance through my husband's work, I can't get any coverage! But if I were poor enough to get state covered insurance, I could get coverage!! Go
figure! Well, I would be that poor if I didn't have a husband who is working his butt off to make up for me not making much of anything these days.
Posts: 3771 | From around | Registered: Mar 2008
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seekhelp
Frequent Contributor (5K+ posts)
Member # 15067
posted
What kind of LLMD sells IV meds at his office? Interesting. I thought only hematologists sell cancer treating meds.
Posts: 7545 | From The 5th Dimension - The Twilight Zone | Registered: Mar 2008
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quote:Originally posted by Fordace: my LLMD "sells" Rocephin treatments at his office, they stick you daily in a different vein, cost 1500.00 a week.......ouch
no picc needed, or heparin flushes
heh for $1500/week I would stick myself with generic ceftriaxone which is $4.5/ 1 gram . It must not be that hard -druggies do that all the time . Heck if you have any nurse friends ( I sadly dont) you can them do peripheral IV line once or twice week
Posts: 856 | From MA | Registered: Jul 2009
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posted
not sure if I could stick myself in that many different areas. I'm not doing it at his office, think I'd rather do tigecycline at any rate....
I thought it was an absurd amount of money, but people are there every day doing it.....
Posts: 208 | From Hudson Valley, New York | Registered: Mar 2008
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I have been taking this drug for a couple of weeks but I had to lower my dosage because it made me so sick. I just want to warn you that it may not be the miracle drug that you think it is. I know that it has been for some people but not for me. So, yes be sure to start with a small dosage before you blow $5,000. I actually felt better on Rocephin but I'm worried about gall stones and I don't know if every time I go off of Rocephin I'll relapse.
Posts: 86 | From California | Registered: Oct 2009
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Rumigirl
Frequent Contributor (1K+ posts)
Member # 15091
posted
Fordace, are people doing Tigecycline at your LLMD's?? And does everyone there pay $1500 per month for daily IV"s?? I thought people were doing IV's in the office through insurance?
Well, I can't do Tigecycline now, because I would have pay completely out-of-pocket, $5,010 a month, plus shipping---that is, if I could tolerate it twice a day, every day, which I doubt.
And I would like to pulse it, but my LLMD won't do that. He doesn't even want me to go back on rocephin, because, after 6 months on it, when I had to have the line pulled (the line sprung a leak!), I completely relapsed.
Posts: 3771 | From around | Registered: Mar 2008
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posted
Hi Rumigirl, no, they are doing Rocephin currently at his office, some insurance companies pay, some don't (like mine). I am not doing it now though because I want to do Tigecycline and he doesn't offer it. I'm so tired of this disease at this point. I need something to cheer me up......Rich
Posts: 208 | From Hudson Valley, New York | Registered: Mar 2008
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I have been on this drug for 4 weeks. I tried to go up to 100mg's a day but I can't. It's actually been so hard to tolerate that I am quitting it.
I am someone who can tolerate a lot of drugs. I did rocephin for 15 months, IV levaquin, flagyl, tinidimax, alinia, zith, septra, on and on and on..and this is the absolute worst drug as far as side effects I have ever been on in my life! It's miserable, you are completely unable to function, so nauscious all the time, and nothing u do or take will help.
I think it must build in the system because the first few doses I did I was like man this stuff is easy what is everyone complaining about. By day 3 I knew what they were talking about and in the 4 weeks I've been on it, it hasn't gotten any easier.
Furthermore I found out after not enough research that the trails done on this drug were extremely short in length of time and very limited trials were completed. They really do not know what this drug will do to you, so if you have problems..well who knows what the effects will be.
Of course if u choose to do this, I wish you the best of luck..but I know very few who have made it more than a month on this stuff and from what I can tell right now I feel actually worse then I did before I started it. So for me, I don't believe it was worth this misery.
Good Luck
Posts: 484 | From Burlingame, Ca | Registered: Sep 2005
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