Who has had to pay out-of-pocket for Tigecycline? Do you feel it was worth it??
I really want to do it, but at $5,010 per month, plus shipping, whew!
Ceftriaxone helped me quite a bit, but not as much as I had hoped. And, since I've had 6 weeks without abx, due to one problem after another, I've totally backslid into horrible shape!
[ 12-01-2009, 12:17 AM: Message edited by: Rumigirl ]
Posted by Rumigirl (Member # 15091) on :
up for replies.
Posted by coltman (Member # 21272) on :
I have no real experience with it but here is what I think: $5k/month is a lot . For 6 month of this you can get stem cell treatment, or you can get 2 month of HBO for 1 month of it .
I dont think its such amazingly different drug that you couldnt get similiar results from much cheaper drugs and supplement -certainly not justifying $5k/m pricetag. Heck $5k covers the whole year of aggressive treatment with every single drugs and supplement you can think off.
Tigecycline is nice on paper - but I think telithromycin +bactrim+ tetracycline and maybe some EPI inhibitors should produce similar effect for much cheaper price
Posted by Sojourner (Member # 9424) on :
My husband has been doing orals (you name it. he's done it) for over three years......after 16 days of tig he has had great improvement with no giant herx (previously always herxed like H*LL).
So far, we are not paying out of pocket....but if insurance cuts us off, I think we would definitely pay for it.
It's a tough call and I think it depends how bad someone is going downhill, and of course, how one responds to the tig. I have yet to hear of anyone who did it for three months who didn't have substantial improvement.
I'll let you know how his MRIs look in a couple months.
Posted by Rumigirl (Member # 15091) on :
coltman,
Sojourner is right. Quite a few people have had remarkable improvement from Tigecycline that they did not have from anything else.
The question is, is it worth the price? As with everything else, it's completely individual, of course. And there is no way to predict what will happen for a particular person.
The insurance boondogle is driving me crazy! Not just for Tigecycline, but for any IV meds. I have fought Oxford every way to Sunday for 6 months to no avail for IV coverage.
Posted by coltman (Member # 21272) on :
quote:Originally posted by Rumigirl: The question is, is it worth the price? As with everything else, it's completely individual, of course. And there is no way to predict what will happen for a particular person.
The insurance boondogle is driving me crazy! Not just for Tigecycline, but for any IV meds. I have fought Oxford every way to Sunday for 6 months to no avail for IV coverage.
Dillemmas like this drive me crazy, I mean I read many amazing reports about several treatments which are out of my price range - well they kinda are , if I dump all my lifesavings. But I am not ready to make that sacrifice unless it would be absoltutely 100% guranteed, which they are not.
On the other hand doing orals/IM for long time is not something I consider a good thing
Posted by Rumigirl (Member # 15091) on :
up for more replies.
Soujourner, please keep me posted about how your husband progresses.
Posted by Kathryn (Member # 17034) on :
Have you tried Costco? I checked there for Azithromycin and it was much lower than Walgreens. I have a membership and went as far as I could to price Tigecycline for you. The number to speak with a pharmacist is 1-800-633-0334. Hope it helps.
Posted by CD57 (Member # 11749) on :
I can't believe that someone could do that drug for three months straight! My LLMD uses it but not for that long, and not even every day.
Sojourner, how did your husband do that every day?
Posted by garunner (Member # 19474) on :
It was the worst and the best thing I've done for treatment. Very difficult to tolerate, but great results. I did not have to pay out of pocket, though.
Posted by Sojourner (Member # 9424) on :
I think there are several people who have done it for three months or more-straight. It depends on how your body reacts to the med. I know some people just cannot tolerate it (like you guys said, stomach pain, nausea, vomitting). Some people have anomolous blood work (like sky high triglycerides etc.) My husband had nausea the first two weeks that he handled by popping prilosec. Now he has only mild transient nausea.
Bottom line is, there are a lot of stumbling blocks......My husband developed a clot after only 16 days with his midline. He is currently infusing through a peripheral IV. So if one thing doesn't get ya, another thing might.
There is no magic bullet,no perfect treatment, but right now, I think this drug (for people who are unresponsive to orals, lots of neuro stuff etc) is the best shot we have.
I'll keep you guys posted.
Posted by METALLlC BLUE (Member # 6628) on :
This is likely the drug I will try if I got to IV.
Posted by lou (Member # 81) on :
Is it typical not to have a big herx with this drug? I can no longer tolerate herxes, as they do permanent damage to neurons.
A herx is basically inflammation, a cytokine/chemokine cascade. So could they be tamed, I asked myself. Some work being done on this because this is also a problem in sepsis. So far there are some patented things being proposed, but nothing ready now.
Another approach is to use antibiotics that do not stir up inflammation. Have an article that says macrolides, and drugs that work against protein synthesis produce less inflammation than beta lactams like the cephalosporins. So, where is tigecycline in that array? Apparently it is in the cycline family, which works against bacterial protein synthesis.
So, could it be the answer for people like me, with maybe the addition of something else (?) that reduces what inflammation there is? And what would that be....aspirin, targeted/pulsed steroid, herbal stuff, IV Mg????
Posted by sammy (Member # 13952) on :
Has anyone else tried Tigecycline lately?
Those of you who have been on it for while, how are you doing?
Posted by lou (Member # 81) on :
Coltman, what did you mean by EPI? What specifically are you referring to? I have not been able to locate anything except PPI inhibitors.
Posted by Sojourner (Member # 9424) on :
Sammy, My husband did 28 days, and is getting a PICC line placed tomorrow for more because it made him feel so well..............we'll let you know.
Posted by Hopeful2010 (Member # 22958) on :
Soujourner,
Please do keep us posted on his progress. Did they pull his port and put in a PICC. I'm curious because I think I am getting some clots. I have not had the port long.
How long is your hubby suppose to be on this medicine?
Thanks
Posted by seekhelp (Member # 15067) on :
i thought every effective drug for Lyme causes a herx. What can you do? It would mean no treating, right?
quote:Originally posted by lou: Is it typical not to have a big herx with this drug? I can no longer tolerate herxes, as they do permanent damage to neurons.
A herx is basically inflammation, a cytokine/chemokine cascade. So could they be tamed, I asked myself. Some work being done on this because this is also a problem in sepsis. So far there are some patented things being proposed, but nothing ready now.
Another approach is to use antibiotics that do not stir up inflammation. Have an article that says macrolides, and drugs that work against protein synthesis produce less inflammation than beta lactams like the cephalosporins. So, where is tigecycline in that array? Apparently it is in the cycline family, which works against bacterial protein synthesis.
So, could it be the answer for people like me, with maybe the addition of something else (?) that reduces what inflammation there is? And what would that be....aspirin, targeted/pulsed steroid, herbal stuff, IV Mg????
Posted by Parisa (Member # 10526) on :
What about IV Flagyl, IV Zithromax, IV Clindamycin....Have you tried any other IV antibiotics? You might try some of the above before wiping out your piggy bank for Tigecycline.
Posted by Fordace (Member # 14874) on :
quote:Originally posted by Hopeful2010: Soujourner,
Please do keep us posted on his progress. Did they pull his port and put in a PICC. I'm curious because I think I am getting some clots. I have not had the port long.
How long is your hubby suppose to be on this medicine?
Thanks
Yes, please keep us informed Soujourner,
Thank you...Rich
Posted by Rumigirl (Member # 15091) on :
Soujourner, that's fabulous news about how well your husband is doing on the Tigecycline. Is he doing it every day twice a day? With any other abx?
Lou, have you tried IV glutathione? That helps a lot with cleaning up the cytokines. And, if you can't do IV easily, it can be nebulized, which isn't as strong, but still works quite well.
You can do the glutathione IV's 3 times/week to every day. If you're nebulizing it, you can do it twice/day, if you need to. On top of that, there are so many other detox methods for the inflammation---enzymes, etc., etc.
I REALLY want to do the Tigecycline. I"m just sweating it about paying out-of-pocket, and therefore should I pulse it, or what. If I'm lucky, insurance may pay some, but I'm not so sure that they will pay anything on it. I've been fighting them for most of this year for IV coverage.
[ 01-14-2010, 12:12 PM: Message edited by: Rumigirl ]
Posted by smiles132002 (Member # 7949) on :
I was on IV 3 years ago for 15 months and got well. Since then I have relapsed and I am back on IV.
My LLMD and I are trying to decide if I should do Rocephin 2 grams 2 times a day with vanco or tigecycline.
I have active babs and bart and I was on IV levaquin but that did not go so well because it lowered my electrolites and I ended up feeling drunk-like every time i infused.
I will be doing the rocephin 7 days but the vanco or tigecycline would be 4 days a week.
I will also be considering going back to rifaphin and also oral mino since I will be off levaquin.
My symptoms are: Right side eye spasms, ringing in right ear, nerve pain in right leg, right knee spasms. I have severe light sensativity, I am nauscious and vomit easily. I also have stomach pain, horrible fatigue, trouble multitasking and speaking and headaches/dizziness.
If you have tried vanco or tigcycline please share your experiences pro's and con's.
Thank you smiles
Posted by Rumigirl (Member # 15091) on :
Smiles,
Tigecycline also gets the co-infections, like Bart, according to Dr. B., but not Babesia. It also has an efflux-pump inhibitor---it keeps the Bb from ejecting the abx.
but, if you are nauseous and vomit easily, you might have a hard time of Tigecycline. (I haven't done it myself). People take it with anti-nausea meds or Prilosec for this.
Posted by jenny76 (Member # 18205) on :
Smiles, I did Tigecycline for a week and ended up not being able to keep anything down so my LLMD had to pull me off for a bit. I was doing it with IV Lev so this time I will be doing the Tigecycline alone to see if I can tolerate it now.
My symptoms (before Tigecycline) always included severe nausea and loss of appetite so the Tigecycline definitely didn't help things. My LLMD has given me Zofran, Phenegren, and now Merinol to try and control the nausea.
I hear that this drug has had great results so I am hoping I can tolerate it now.
Posted by smiles132002 (Member # 7949) on :
the levaquin with rocephin made me so dizzy and nausecous that i started vomitting but llmd gave me zofran which helped a lot-unforchunetly it makes u tired..
since i have co's i'd be interested in trying it. is it taken with rocephin or just by itself?
dr. b says vanco is the best IV drug-but i am afraid i would turn red and be covered in hives since hives is my other major symptoms besides vomitting.
jenny i have the loss of appetite as well-any idea if that's due to a co infection or lyme?
Thank you, smiles
Posted by jenny76 (Member # 18205) on :
Hi Smiles,
From what my LLMD says it is most likely Babesia causing this. (The loss of appetite and nausea)
Hope it works for you!!
Jenny :-)
Posted by Sojourner (Member # 9424) on :
Hopeful........he had a midline and he got a nice sized clot in his vein. Three weeks of heparin shots (and lumbrokinase) and the clot was gone.
He is not one to engage in risky behavior, but afer getting cleared by the hematologist he was dead set on getting this drug back in his vein, and he hated the whole peripheral line thing. So a Picc it is.
Tigecycline doesn't seem to cause big herxes....Our doc theorizes it could be because it KILLS the bug rather than induces blebbing, cysting etc.
Posted by Rumigirl (Member # 15091) on :
Wow, Sojourner, if that's true, that it kills the Bb without causing them to turn to cysts . . . wouldn't that be wonderful!
Smiles, I think that Tigecycline is most often done without another IV abx, but is sometimes done with rocephin. Frankly, to do the two simultaneously seems to me would require a liver, etc. of steel.
[ 01-14-2010, 12:13 PM: Message edited by: Rumigirl ]
Posted by smiles132002 (Member # 7949) on :
Would someone do Tigecycline with another drug like levaquin? My LLMD feels strongly that combination pulsing is the best way to go for me. I was on levaquin and rocephin and my liver was fine, but the levaquin lowered my electrolites and i felt drunk-like after the infusions which lasted the entire 4 days i infused it.
She mentioned tigecycline and I mentioned vanco but she won't do both-understandably.
I had such a great experience with rocephin the last time around but if tigecycline works better and hits the co's that would be fantastic. I think I am going to push for this.
What does the dosing look like? every 12 hours? how many days a week?
I opted for the hickman central port line which is needless. I asked my doctor about the midline but he said that the blood in our arms is stagnet and the veins are tiny. The antibiotics is so strong that we either kill the vein or get clots bc of this. The picc line you can't get wet, is made of plastic (which is rejected by a lot of lymies) and you can't be active bc the plastic can break over the shoulder and then they have to give you surgery to find it. The under skin port needs has a needle with cather in you and insurance will only approve nursing once a week so you can't get the site wet when the needle is in it. You also have to wear a dressing throughout the entire time you do IV.
The hickman is completely needless after 3-6 weeks you can remove the dressing completely. Which is a HUGE financial savings. You can shower, swim, whatever you want. All the tubing is compatible with the end of the hickman so you just twist and start. It's made of a saline plastic which is more compatible with our bodies. It's also got two different types of anti-bacterial and microbial things insert to prevent infection. They can be temperamental but I had mine las t time for 15 months with no problems. You don't need a nurse to check in on you and you can get blood drawn at a local lab. As far as financial stuff goes it really is one of the cheaper lines to get. Down side of course is that it requires surgery to have it placed and that opens you up for infections. It can be removed without going under.
Posted by lou (Member # 81) on :
Are you sure about removing the dressing from the hickman? It used to be that the dressing had to stay, get changed every week. Please double check this before you remove the dressing.
Posted by dmc (Member # 5102) on :
I did 50mg of Tigecyl 2X day. I did it every day no pulsing. Had to be inserted into a iv bag and then infused. Took approx. 1 hour for the iv drip.
Posted by smiles132002 (Member # 7949) on :
lou- When I did this 3 years ago I did not wear a dressing. You need to wear the dressing until your body grows into the cuff which takes 3-6 weeks. After that you are fine to not wear a dressing-according to my surgeon.
My skin was also pretty raw from all the tape so I was relieved I did not have to keep wearing it. Certainly keeping it clean is important. Cleaning the tube etc but there's no need to continue with dressings.
dmc sounds similar to dosing on the bottle. Did you feel 50mgs was enough?
Posted by Rumigirl (Member # 15091) on :
Smiles,
50 mg BID is the dose of the Tigecycline, not higher! That's enough.
On the Hickman, I saw the info online for both opinions about the dressing, required even after 3-6 weeks, or not required after that. Frankly, the idea that it's ok without is surprising, given what is needed for all other central lines, and the fact that it goes to your vena cava.
Posted by smiles132002 (Member # 7949) on :
Perhaps it depends on the patient. As I said for my situation and with my cardio-vascular surgeon he told me that the way I am healing and because of the anti-bacterial/microbial stuff he placed inside there is no reason for a dressing after 6 weeks.
Your skin grows around the tube and the cuff so that it cannot be pulled out without tearing some tissue. As long as you keep it clean there is no reason to wear a dressing. If you choose to wear a dressing then you can-but still you would be saving money on nursing visits because it's very easy to change.
Nothing is a gaurentee for every patient, however it was a HUGE savings for me. Just thought I'd share because I know a lot of people don't know about this option and I was surprised to learn all of it myself.