Anyone have anything to report??????
Posted by merrygirl (Member # 12041) on :
I wanted to go on this but it costs $6000 out of pocket per month for the vials! LLMd said that 3 out of the 5 patients were doing excellent on it.
Wish I could give it a try.
melissa
Posted by njgirl14 (Member # 14174) on :
hi merrygirl
WOW expensive!
did ins reject or do you not have ins? Do you know what Drs have rx ed this? My Dr has not used it and thought if he can talk to a Dr using it he may be more willing to rx it for me.
Posted by bpbri (Member # 5444) on :
any more updates on tigecycline/Tygacil? Is it helping anyone in the long run?
Posted by merrygirl (Member # 12041) on :
I havent tried to get it through insurance. LLMD said it will likely get denied. I have other meds to try before I go to IV so I decided to do that instead,
Melissa
Posted by peter j (Member # 11825) on :
That's great news Melissa. Where's your LLMD from?
I am (most likely) starting tigecycline next week.
Posted by Kreynolds (Member # 15117) on :
njgirl14...
I sent you a PM , im on it and its going ok, you can expect the headaches and stomach problems to come along with it... i havent noticed any relief from it though.... i am taking it for the Lyme and Bart....
Posted by onmyway (Member # 17607) on :
I am very intersted in how people are doing on it as well! I am getting ready to start it next Monday!
Is the nausea and diziness as bad as they say? Are you taking anything with it like Zofran to help with nausea? My LLMD suggested doing that to help with it! I am nervous but excited at the same time!
I have been on IV Zithromax for the past 8 months with a 3 month break due to ins. putting a hold on further treatment and I have been back on Zith for the past month! I have also been on Rocephin IV in the past as well as many orals!
I have heard for those who have tried a lot of antibioticd with little improvement this is a great drug to try!
I have Lyme, Bart and Babesia! I am also getting ready to have a an adrenalectomy due to an adrenal adenoma, high blood pressure, 30lb weight gain and the density on the mass went from 0 HU on a scan from 07 to 88HU on a scan I had a month ago! The Endo wants to remove it! He says he does not like the way it looks! I agree!
Please keep the experiences coming about this medication!
Thanks, Onmyway
Posted by seekhelp (Member # 15067) on :
What insurer allows 8 months of oral Abx for Lyme? I need that one! That would be great news.
quote:Originally posted by onmyway: I am very intersted in how people are doing on it as well! I am getting ready to start it next Monday!
Is the nausea and diziness as bad as they say? Are you taking anything with it like Zofran to help with nausea? My LLMD suggested doing that to help with it! I am nervous but excited at the same time!
I have been on IV Zithromax for the past 8 months with a 3 month break due to ins. putting a hold on further treatment and I have been back on Zith for the past month! I have also been on Rocephin IV in the past as well as many orals!
I have heard for those who have tried a lot of antibioticd with little improvement this is a great drug to try!
I have Lyme, Bart and Babesia! I am also getting ready to have a an adrenalectomy due to an adrenal adenoma, high blood pressure, 30lb weight gain and the density on the mass went from 0 HU on a scan from 07 to 88HU on a scan I had a month ago! The Endo wants to remove it! He says he does not like the way it looks! I agree!
Please keep the experiences coming about this medication!
Thanks, Onmyway
Posted by peter j (Member # 11825) on :
Kreynolds; please keep us updated on your progress. How long have you been on it? Are you combining it with anything?
Posted by onmyway (Member # 17607) on :
Yeah Right!!
Well I had Pacificare and they were great! They my employer switched to Blue Shield Of California and they are the ones that only covered 4 months and put a hold on further treamtent! I have now appealed twice to them and they are still denying me now I am appealing to the State of Californai Department of Managed Helath Care! They have the power to overide Blue Shield of California! We will see! So right now I am pating our of pocket! It really sucks!
Especially since I think this Tygacil is going to be expensive! I am a little scared! I am not sure of the price yet! My LLMD wanted me on IV Doxy but obviously there is a problem with getting it and if people are getting it he said there are a lot of bad batches! Like the filters in the lines turning brown form the medicine! I don't think so!
I was very fortunate with Pacificare! They never once denied me for nay medication!!! They even paid for Mepron! Of course Blue Shield Of Ca denied it right away because it is expensive and ther eis not generic for it! Someone needs to bring BCBS to there knees!!! they have casued me so much stress, agony and a hugr relapse!!!
Okay I am done my vent!!
Have a great day!
Onmyway
Posted by ctlyme (Member # 9022) on :
I came of Rocephine and took a month breal and then tried Zithro but i had trouble with my ears so my LLMD let me try Tygacil.
I lasted about 5 days. My already messed up stomach could not handle it. It was very difficult to tolerate.
My LLMd said she gave it to w/ someone else and she also only lasted a short period of time.
However, I do know somebody who made it past the first week(which was very difficult for her also) and continues to use it. The naseua,dizziness and exhaustion lifted.
Posted by ctlyme (Member # 9022) on :
I came of Rocephine and took a month breal and then tried Zithro but i had trouble with my ears so my LLMD let me try Tygacil.
I lasted about 5 days. My already messed up stomach could not handle it. It was very difficult to tolerate.
My LLMd said she gave it to w/ someone else and she also only lasted a short period of time.
However, I do know somebody who made it past the first week(which was very difficult for her also) and continues to use it. The naseua,dizziness and exhaustion lifted.
Posted by Kreynolds (Member # 15117) on :
peter j:
I have been on it for 4 weeks now... Im taking flagyl with it, no other antibiotics... It is very strong stuff!!!
Posted by peter j (Member # 11825) on :
Thanks for the reply. With you, was the nausea worse the first week, and than got a bit better, or has it been non-changing?
Do you take anti-nausea drugs?
Posted by Kreynolds (Member # 15117) on :
peter j:
It has been non-changing.....
Posted by peter j (Member # 11825) on :
which anti-nausea drugs do you take?
Posted by onmyway (Member # 17607) on :
Yes I am curious about what nausea meds as well! I am starting tygacil Monday! Thanks, Onmyway
Posted by hcconn22 (Member # 5263) on :
Wife has been working with 2 LLMD's to get on tigr and we go Monday to get what we believe to be the final OK to order supplies and get going.
Wife is ready to do anything to get over lyme.... and tigr per our LLMD looks very promising as far as the chemistry of the drug for lyme.
Well see and i'm sure wifee will post non stop on updates - as long as she can. If not I may help to keep a diary and get the word out regarding our experience.
Posted by onmyway (Member # 17607) on :
Best of luck with treatment! I start Monday as well! Am a little scared but also excited! I am ready to be well!!!
Take Care, Onmyway
Posted by dmc (Member # 5102) on :
very tough but does get better. The first month crackers & ginger ale were my sustinance.
I thought of it as chemo...all those who are so sick while doing that. Even had a few times I dreaded hooking up to it.
Did 15 weeks, had to have line pulled due to 2 large blood clots under left armpit. (even was on lovenox for genetic clotting thing)
Bummer, cause the last month was an "ahhh, it's making a big difference."
I do want to get back on it but have to see what MD says...may have cascade effect...once a clot more to follow.
now daily (last 2 weeks) bloodwork -
Was on 3000mg amoxi last 2 weeks of IV too...still on that.
good luck to you all.
BTW one of my LLMDs says it is a cyst buster too.
Posted by onmyway (Member # 17607) on :
Best of luck with treatment! I start Monday as well! Am a little scared but also excited! I am ready to be well!!!
Take Care, Onmyway
Posted by peter j (Member # 11825) on :
omniway, how has it been starting with tige? Are you experiencing nausea? and if you are, are you taking anything to combat it?
Please tell how it has been the first days. I am starting with tige some time in the end of this week.
Posted by onmyway (Member # 17607) on :
I was supposed to start it on Monday! They are trying to get it to go through my insurance so I don't have to pay out of pocket! If the insurance refuses to pay for it I have to pay $875.00 per week for the medication! Ugh!!
I am waiting ot see if I can do M-F IV Tigecycline and then pulse flagyl on the weekends then it would be $625.00 per week!
The other obstacle is that I have to have an adrenalectomy wihtin the next two weeks and we have decided to start it after surgery! this way I dont have to deal with feeling bad from surgery and feeling bad from the medication! I have an adenoma on my left adrenal galnd that doubled in size in one year and it's density went from 0 to 88 which is a huge red flag!!
So I am sorry to say it will be a few weeks before I start the meds!!
Take Care! Onmyway
Posted by dmc (Member # 5102) on :
onmyway, I hope your adrenalectomy goes well.
I will keep positive thoughts and extra prayers for you.
Posted by CD57 (Member # 11749) on :
What does Tygacil go after?
Posted by peter j (Member # 11825) on :
It's similar in structure to the tetracycline abx, so it's likely that they might work on the same organisms.
Tigecycline has shows good in vitro results against borrelia.
Posted by Rianna (Member # 11038) on :
What is the IV dosage of Tygacil?
I live between Spain and the UK and I need to get a price from Spain as all meds here are a fraction of the price or USA/UK, so it would be interesting to know what this comes in at over here.
Rianna
Posted by Tracy9 (Member # 7521) on :
I saw my neuro LLD on Monday, and asked him again to put me on Tygacil.
He said in the patients he has used it on, as well as reports from others, has shown it to either be ineffective or to have way too many adverse reactions/side effects.
So, he is very reluctant to use it. Since I have never been on IV antibiotics yet at all, he is putting me on IV Rocephin.
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That would be great news.