posted
How long have the people that have taken this drug done it?
I am going on month 3 and ready to kill myself..well not literally but seriously this stuff is brutal and I have to find the strength to work some how and the nausea is DREADFUL.
How long-and how are you now?
Posts: 484 | From Burlingame, Ca | Registered: Sep 2005
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I'm on it and finishing up week 8. I had to take a 1-week break after the 5th week because my liver got all messed up.
Now I'm taking a lower dose and my liver seems to be tolerating it (66 mg/day compared to 100mg/day). I'm small -- about 110lbs, so we hoped the lower dose would be ok. Knock on wood.
The side-effects are tough -- for me the nausea and fatigue are the worst. And it hits between 2 and 7 pm like clockwork. Acupuncture helped a bit with the nausea as does zofran (prescription anti-emetic). Have you tried zofran?
I work too and it is a struggle. I puked in the trash can during a meeting. Yup. Couldn't make it out to the restroom.
It's been tough, but I'm bound and determined to make it work. I'm very neuro and it really seems to be helping my neurological symptoms and pain.
So I do think it is a great drug. And nothing else has worked for me -- I've made great improvements with rocephin, IM and orals, but no remission.
Have you had dramatic improvement in your Lyme symptoms?
Anyway, hang in there if you can.
I would love to make at least 4 months and reassess.
Take care, Allie
Posts: 300 | From Northeast | Registered: Dec 2006
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posted
I've only had one month of Tygacil and have to take a break because my WBC count is too low. It's only gone up a little over the past 5 days, so I have to take another 5-6 days off and test WBC count again.
The nausea was bad but not unbearable so far. It actually got worse and worse over the month.
Still, I hope to continue it because it seems to be helping with my neuro symptoms, including headaches. It's the most progress I've seen in the past year and a half of treating, including trying Rocephin twice.
Posts: 236 | From Washington | Registered: Jul 2008
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- Ginger capsules might help lessen nausea. -
Posts: 48021 | From Tree House | Registered: Jul 2007
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posted
i went on Tiger 50mgs for 30 days straight. My cd 57 was 28 before I started and a month after I stopped it, it bumped up to 60. C4a before tiger was 34,000 and after 7,200 (should be around 2800) so HUGE improvement.
I am still western blot positive. My fry test showed something but they can't specify what it is, just that there is something and it shouldn't be there. All co's negative.
I got hives, pneumonia, and a viral lung infection from feb-march so although I felt better I was super super sick and couldn't really figure out how much better, but cognitively I was A LOT better.
I restarted on tiger 3 days a week and rocephin 4 days a week all of march to present. I do notice that each time I infuse the side effects are worse. I vomit almost every single infusion. I take zofran and phenergen. I also drink ginger ale and eat crackers.
I too notice that between 3-8 are the WORST for side effects. For me, every time I infuse I my right knee swells, my knees get very stiff like I haven't moved them in weeks. My neck gets stiff and hurts and so does my back. My eyes get blurry. And by the time I am done infusing I am passed out for 12-16 hours. I just can't stay awake. It's so crazy because I just sleep away unless I have to vomit or pee.
I feel miserable and don't expect I will feel better until 1 month after I stop infusing, but I was just curious if 50mg is enough ( i am 120lbs) and how long you all can handle this stuff for.
All my cbc blood work has been normal, liver great etc..so I can keep going-except it's so hard to work on this stuff and it's getting harder the longer I do it.
Thank you!
Posts: 484 | From Burlingame, Ca | Registered: Sep 2005
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posted
I also notice a lot of nerve pain, numbness, tingling and leg/foot cramps and dizziness when i am infusing and just after.
It's interesting to me that you feel better neurologically-because I feel worse-but I am hoping that is me herxing or something to get rid of all that neuropathy?
Thanks for all your responses-would love to know more of what you all think
Posts: 484 | From Burlingame, Ca | Registered: Sep 2005
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posted
So, smiles, have you had your cholesterol checked while on it? One of my liver problems had to do with cholesterol, so you might want to check that.
It's usually about 165 and went down to about 80 by week 5 on full-dose Tig. I was feeling pretty sick and it got worse as my liver got worse.
I've been 3 weeks back on at the lower dose and my nausea was bad at first and has since really improved along with fatigue (knock on wood).
I hope 66mg is a therapeutic dose, but I think it must be since my sx are continuing to improve.
And also my WBC went down to 2.7 (low neutrophils), but I tend to go low on and off. It was normal last week.
So, my advice is to add cholesterol to your weekly bloodwork.
This is an interesting thread! I'm soooo curious to hear how others are doing.
Allie
Posts: 300 | From Northeast | Registered: Dec 2006
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posted
i will find out if my cholesterol is being checked. I am not sure. I just know they do cultures, urine, and blood. If cholesterol is part of the cbc i have it done. Everything has been normal.
My liver has always been good-but i am only on 50mg not 100 a day so maybe that is the difference. I was under the impression that 50mg a day was the full dose. Is that not correct?
Interesting that your symptoms are getting better on the lower dose and mine are getting worse as i take the drug. How often do you take tiger and do you take anything else?
I think part of why I am getting more sick is because I am pulsing it 3 days a week and doing 4 days of rocephin. When I did rocephin 3 years ago the longer I took it the better I felt and the higher up my cd57 went. It took 18 months but it was up to 120 and i wanted to keep going but doc made me stop.
Pulsing is so much harder because every time i take it-it slams me and my body never gets used to it. But maybe that means I am working smarter not harder.
I too am interested in how others are doing and how long people are staying on it...
Thanks!
Posts: 484 | From Burlingame, Ca | Registered: Sep 2005
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sammy
Frequent Contributor (5K+ posts)
Member # 13952
posted
Hi Smiles,
I've been on Tygacil (50mg twice daily) for about 4mo now. The first 2mo were almost unbearable. I only stuck it out because I started to notice an improvement in my cognitive symptoms. This is also the only medication that seems to have halted my progressive neurological symptoms.
Over the past 2mo I feel like I've begun to tolerate the Tygacil more. I take Zofran 2-3x daily for nausea, it helps but some days it is not enough. It gets so bad I feel like I can't open my eyes or move my head.
I've also found that I need to eat more frequently while on this medicine, like every 2hrs or else my blood sugar drops. Sometimes I forget and then I start to feel bad. When I haven't eaten in a while I will get shaky, cold and clammy, very emotional, and I can't think clearly.
Smiles, maybe you would feel better if you tried eating more frequently. Make sure that you are getting enough protein and good fats, these will help keep your blood sugar more stable.
What does your doctor say about you feeling worse and worse with each infusion? I'm not a doctor but I would wonder if you keep getting worse maybe you need to take a break from the Tygacil or switch to a different med.
I do not have experience with pulsing antibiotics so maybe what you are experiencing is normal with this type of protocol (alternating Rocephin and Tyg)?
Take care Posts: 5237 | From here | Registered: Nov 2007
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posted
She took me off for 3 days (this friday, saturday, sunday) and wants me to call her Monday to tell her how I was.
Off the medication I feel A LOT better. I am still very fatigued, but I think that working 30 hours a week and doing this has also been so tough. My insurance only approved Zofran for 12 days a month. My doctor wrote it for 8 mgs so I can take 4mgs once a day.
For me a month after I stopped treatment I noticed a HUGE difference cognitively and energy wise. That was after a month of straight tiger.
Is the normal dosage 50mgs twice a day? Part of the problem I have with tiger is that I'll do my infusion and then by the end I am so tired I can barely keep my eyes open. I literally pass out until i have to wake up to eat and infuse again or to pee and vomit. I infuse on friday, saturday, sunday (the days I don't work) so I'm trying to understand how you guys infuse twice a day and your able to stay awake to eat every two hours?
When you say the first two months were unbearable how do you mean?
Do you work?
Thanks
Posts: 484 | From Burlingame, Ca | Registered: Sep 2005
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sammy
Frequent Contributor (5K+ posts)
Member # 13952
posted
Smiles, my insurance only covers 12 doses of Zofran at a time but I am able to get refills every 4 days. I wonder if yours might be the same? It is annoying to have to go to the pharmacy that often but necessary because I don't like to throw up.
The normal dose of Tygacil is 50mg twice daily for 5-14 days. Tygacil is not officially approved for treatment of Lyme and Co's (so who knows what dose will be best?). It is indicated for treatment of community acquired pneumonia, complicated skin infections, and complicated intra-abdominal infections. You can read more here: http://www.wyeth.com/hcp/tygacil/dosing
Thankfully, the infusions don't seem to make me feel any more tired than usual. How quickly do you run your infusions? Maybe it would be easier to tolerate if you slowed the rate. I use the home pump balls that self infuse. It is supposed to run over an hour but mine always take at least 2hrs.
The first two months of treatment were unbearable because my symptoms were completely debilitating (nausea, dizziness, head pressure, exhaustion, etc). I could barely move without getting sick. I spent most of those days in bed.
Unfortunately I have been unable to work since the Sept. I got too sick and had to take medical leave then I lost my job because I was not able to return in time. That was a traumatic experience. I wish I was well enough to work. I miss it terribly.
Hopefully soon I will start to see some drastic improvements from all of my treatment efforts. Smiles, I hope that you will start to feel better soon too.
Posts: 5237 | From here | Registered: Nov 2007
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posted
Sammy, I had to quit my job last Jan and disability only lasts for a year. I am not able to get ssdi because it takes 2 years.
I am doing 50mgs over 2 hours in 500 cc's. My home health said they couldn't send the ball because tygacil needs to be used within 24 hours of mixing it. How do you get the ball of medication?
After two months do the symptoms just go away?
I will see if she can write it for 12 days and then I can just get a new script for more every 12 days, but my insurance is strict about that stuff and typically it's x dose for the month.
Do you infuse every day?
I did tiger back in Dec but then stop jan, feb and restarted in March so I expect to continue to be sick all of april.
thanks
Posts: 484 | From Burlingame, Ca | Registered: Sep 2005
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posted
Forgot to make my point-so because I don't have any income-I have to work-it's not a choice-it's work or die...gotta love america
Posts: 484 | From Burlingame, Ca | Registered: Sep 2005
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posted
I infuse 2x daily ~ 33mg each time and it takes me 1/2 hr using a ball. I mix the tygacil with saline and put it in the ball each time. It's a bit of a process, but it gets easier with practice. You just have to keep everything sterile.
I don't feel sick when I'm infusing, just at different times when it strikes (usually in the afternoon). The nausea seems better if I eat a lot of small meals and chew gum. I'm not a gum chewer by nature, but I'm constantly chewing gum now even if I don't want it.
I'm on my 9th week and I want this to work so badly.
My labwork also showed that my protein was low, so I started drinking those protein shakes (I got the organic Hemp powder and blend it with yogurt, juice, frozen fruit etc). It's kinda nasty, but about 2 days after starting to drink it I had a lot more energy... don't know if it will change my labwork, though...
Just an idea.
Allie
Posts: 300 | From Northeast | Registered: Dec 2006
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posted
Interesting ideas. I will try both. Doc didn't call me back yet, so hopefully I'll know more tomorrow.
I can't imagine doing two infusions. I was doing two infusions of 25mgs per infusion in Dec but I didn't have to work..maybe I just need to suck it up and stop being a baby.
Allie, this stuff does work. My numbers really did improve HUGE amounts. My cognitive abilities improved A LOT. It didn't happen for me right away. About a month after I stopped all abx I noticed that people could tell me things and I remembered. I could remember words i used to spend hours or days searching for to express what I was thinking. It was just as though my brain came back over night. It wasn't perfect but it was much improved.
Now back on IV I am like mush. I go really slow. I can't remember anything. I have a hard time getting across my points or ideas or thoughts. My writing is back to Terrible..but I know for a fact that month after I stop this-I will be improved even more.
That is the single and only reason I continue this horrid treatment.
I really hope it works for you too!!!!
Posts: 484 | From Burlingame, Ca | Registered: Sep 2005
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I can tell it's working too. I just want it soooo bad.
How about this observation re nausea. When I started drinking Hemp protein shakes I not only noticed improved energy but also decreased nausea.
Now, I was joking around with my family and friends asking if I'd now test positive for pot if my work decided to test me (since hemp is from the pot plant). Whatever, I'm not too concerned about getting tested.
But we also know pot is renowned to help nausea, lack of appetite, etc. and in fact RI (and other states) allows MDs to prescribe pot for nausea and stuff like that.
So, do you think the hemp protein has helped with my nausea too? Hmmmm. Just food for thought. I got an organic powder(unflavored) at Whole Foods and blend it with other things like I described above.
Maybe you should try it and see if you notice any difference???
OK. That's my brilliant observation for the day. Back to work.
Allie
Posts: 300 | From Northeast | Registered: Dec 2006
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posted
interesting! I am definitely going to try that. I live in CA, not worried about it.
That being said I have tried weed for this and it hasn't worked for me with nausea or appetite :-( I've never smoked before though, so from what I've been told I need to be more regular than just once.
Try to hang in there too!!!
Posts: 484 | From Burlingame, Ca | Registered: Sep 2005
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good thread
Posts: 410 | From Victoria BC, Canada | Registered: Jul 2008
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Tracy9
Frequent Contributor (1K+ posts)
Member # 7521
posted
Reading this thread and bumping it up for updates, if available, from the posters, or anyone else. I will be starting IV Tigecycline very soon for Rocky Mountain Spotted Fever and Lyme, and am very concerned about the nausea primarily. Some of my friends have been put on Marinol for it which I'm not real interested in; have been given Zofran, also have Phenargen, and Reglan.
Very interested to know how people have done, how long on it, etc? I hope I can do this.
13 years Lyme & Co.; Small Fiber Neuropathy; Myasthenia Gravis, Adrenal Insufficiency. On chemo for 2 1/2 years as experimental treatment for MG. Posts: 4480 | From Northeastern Connecticut | Registered: Jun 2005
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Rumigirl
Frequent Contributor (1K+ posts)
Member # 15091
posted
Wow, you're lucky that you can get Tygacil covered, Tracy! I couldn't, that's for sure. And it's ungodly expensive if not covered.
How has everyone else gotten it covered??
Yes, I want to know how people are doing who have done it? How much has it helped? Have the gains lasted?
Posts: 3753 | From around | Registered: Mar 2008
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sammy
Frequent Contributor (5K+ posts)
Member # 13952
posted
Tracy, I did not test positive for RMSF but I did use Tygacil for Lyme treatment. I was on it for about 8mo. I took it along with other oral and IV antibiotics.
Nausea has been a symptom that I've dealt with since the beginning of this illness. Being on Tygacil made it worse for me. I learned to take Zofran every 4hrs and often needed Phenergan and or Tigan to make the nausea bearable.
Tygacil also effected my sense of taste. I couldn't tolerate anything remotely sweet. It made me sick to think of eating a banana. I did best with salty or savory foods. I also had to eat every couple hours even if I didn't feel hungry to prevent my blood sugar from dropping.
The Tygacil did help to reduce the severity of my cognitive symptoms and helped stop my blurry vision episode (I often could not see to read before this med). After a couple months I did plateau. My doctor had me stay on it longer because we kept hoping that it would help more. It eventually built up in my system to the point where it was making me feel sicker with constant uncontrollable nausea, vomiting, dizziness, vertigo, and headaches. Thankfully though I have been able to maintain the progress made with Tygacil.
For anyone interested in insurance coverage you will have to check with your individual plan. My insurance did not cover the cost of any of IV meds or infusion supplies last year. I even tried appealing with the help of my doctor and a lawyer. Some people here have been lucky to get their IV meds covered.
Posts: 5237 | From here | Registered: Nov 2007
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"I still have Mt.Everest to climb, but I have traveled across the world and arrived at the mountain". Posts: 633 | From baltimore | Registered: Mar 2010
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Tracy9
Frequent Contributor (1K+ posts)
Member # 7521
posted
Thanks for your experiences, Sammy. I guess the main reason he is putting me on it is Lyme. My neuro LLD who is leaving felt I'd pretty much knocked down the Lyme, but my recent IGENEX test did show some significant bands. My new LLD is an infectious disease doc and he seems to think I definitely need long term IV abx based on my IGENEX for Lyme as well as the RMSF. Looking at the script, it just says Lyme. He verbalized it was for both and his office notes said for both.
I hope I can handle this. I got through all those horrific IVIG side effects, the hellish Rifampin herxes, I hope I can muster it up again for this.
13 years Lyme & Co.; Small Fiber Neuropathy; Myasthenia Gravis, Adrenal Insufficiency. On chemo for 2 1/2 years as experimental treatment for MG. Posts: 4480 | From Northeastern Connecticut | Registered: Jun 2005
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Tracy9
Frequent Contributor (1K+ posts)
Member # 7521
posted
I should add my neuro LLD is doing a CD 57 and neuroscience testing and was also putting me on IV if those showed Lyme was still an issue.
13 years Lyme & Co.; Small Fiber Neuropathy; Myasthenia Gravis, Adrenal Insufficiency. On chemo for 2 1/2 years as experimental treatment for MG. Posts: 4480 | From Northeastern Connecticut | Registered: Jun 2005
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