posted
Well, my LLMD has now put me back on IV meds (after a 5-week "break" to "detox"). I am starting IV rocephin tomorrow.
My question is this...should it be infused with a drip or a slow IV push over 10-minutes?
When I had rocephin 2.5 years ago, it was in an Internmate (the little baby bottle-looking thing with the ball inside filled with the med), that I could stick in my pocket and walk around with it (not attached to an IV pole with restricted movement). I infused it over like 30-60 minutes, as I recall.
Now, though, my infusion company called and said that it is now an IV push...2 grams to be infused over 5-10 minutes. I started searching the internet and found some troubling results...several that said that it should be drip only, never push. Yikes!
I have a call into my LLMD, but would love to hear some responses from those who have done IV rocephin...
Thanks in advance!
~tri
-------------------- ? date of bite/no rash 10/09 symptoms, 4/10 diagnosed, after 6 mos. ER visits, tons of docs/tests CDC+ 23/39/41/45/58/66/93 currently on oral plaquenil, doryx, rifampin, pyrazinamide, nystatin, numerous supplements Posts: 718 | From Pennsylvania | Registered: Jun 2010
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gmb
Unregistered
posted
tri-
I had also read on the InfuServe web site that a push with IV Rocephin was not recommended, but to do a slow drip, or an infusion ball. I guess it's up to what the infusion service provider's capability is or what they recommend.
I stated IV Rocephin in Dec 2011 with an 2g/20cc IV push once a day. 2 months after that I went to 2g/20cc twice a day, 4 days on and 3 days off. My home nurse said to push at 2cc's per 30 seconds, but my LLMD said to push slower over 10 to 12 minutes.
After 13 month on IV Rocephin I just changed over to IV Doxy. Doxy requires a drip bag or a one hour infusion ball. Since I have to take the doxy 1x per day. The ball was the least obtrusive, but you still need time to do all SASH steps.
I prefer the push vs an infusion ball since SASH with 20cc syringe takes what maybe 20 minutes start to finish? Vs over an hour for the infusion ball. Also with the infusion ball I find having time to kill and freedom to move around there is a higher risk of pulling on the PICC line un-necessarily.
I've even hooked up the IV Doxy in the am, drove to work, and S & H 'd at my desk. Does that count for driving under the influence?
posted
How have you been feeling? I know you have had a rough time of it with little to no improvement over the years. I sincerely hope you are seeing some improvement.
Posts: 478 | From Third Coast | Registered: Feb 2011
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posted
gmb - HA! LOL! Driving under the influence! Thanks for the input!
koo - Well, interesting question...I have been sick with this beast for 3.5 years now, in treatment almost 3 of those years. I have been with three different LLMDs, on orals most of that time and have had two picc lines with IV meds. Am I better? No way! Improved/improving? I think so.
After 5 months on IV doxy this go round, along with orals, and being with the heavy hitter LLMD in NY, I started to improve...'got to about 60%, maybe or so. Then, they took me off of ALL antibiotics, both oral and IV for 5 weeks to focus heavily on "detox". Well, I seemed to feel better off of the meds than on...that is, until about week #4, at which point some old symptoms started creaping back in and I started to feel gradually, but steadily, worse. So, he has now put me back on IV rocephin. Hence my question above...ugh...Thanks so much for asking though! Much appreciated!
Anyone else?
-------------------- ? date of bite/no rash 10/09 symptoms, 4/10 diagnosed, after 6 mos. ER visits, tons of docs/tests CDC+ 23/39/41/45/58/66/93 currently on oral plaquenil, doryx, rifampin, pyrazinamide, nystatin, numerous supplements Posts: 718 | From Pennsylvania | Registered: Jun 2010
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Here is what the manufacturer recommends: "Intravenous Administration: Rocephin should be administered intravenously by infusion over a period of 30 minutes."
Your infusion company should follow the recommendations of the manufacturer. This is how the drug was tested to be effective and safe.
If you give the drug in a more concentrated form and push it faster can the infusion company guarantee that it will be as effective as an IV infusion? Can they prove this with research studies? Is it safe to do this, no increase in side effects?
Pushing it too fast can lead to increased side effects. The body doesn't have enough time to distribute/absorb the medicine like it does with the slow steady IV infusion.
It sounds like your infusion company is trying to save money by asking you to do IV pushes. You are the patient so you can tell them that you need the infusions because you know that they are the best for you.
Posts: 5237 | From here | Registered: Nov 2007
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posted
I'm a newbie to the world of IV. I've had symptoms for just over a year but treatment on and off for 7 months (took a break for 3 months pregnancy in the middle before I miscarried).
I have an MD, not LL but a great researcher and uncharateristically happy to help us in whatever way he can. Right now he has me on oral doxy, the usual high Lyme dose. I've also alternated in and out with tinidazole, however I have noticed NO improvement, or even herx or change with oral abx. Did you find that too? Did you find that you started to see some changes when you tried IV. My MD suggested I do 1 month IV Ceftriaxone to see what happens. Any thoughts?
Thanks, and all the best... you're on a long hard road...
-------------------- - Posts: 19 | From BC | Registered: Feb 2013
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gmb
Unregistered
posted
In my opinion trying IV Rocephin for 30 days to see what happens will not be long enough. Every one is different though
If you have any neuro type lyme symptoms for over a year it may take 3 to 5 years of treatment to get well. IV may only be a part of the regimen.
Go thru Dr B's Guidelines if you haven't already. Post your symptoms and others may share their experiences.
posted
Thanks gmb, I'll look into Dr B's Guidlines. My only neuro symptom is eye pain and sensitivity to light which comes and goes but at the moment is in full force including stars in my peripheral from time to time... yikes! I'll talk to my Doc again about the Rochephin when I next see him. He's not LL just an internist MD so it's always a little tricky!
-------------------- - Posts: 19 | From BC | Registered: Feb 2013
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I have taken six doses (one daily for the past six days) of the IV rocephin...2 gms slow IV push over five minutes. Although I was a little nervous about it at first, I did the first does with my visiting nurse present (who I really trust, by the way...she is the best!). I told her of my concerns and she said she has seen several patients with the same regimen. I just said "okay, but please do me a favor and bring me back if anything bad happens!" LOL! Nothing happened...all was well.
Just some food for thought...
Thank you all for your responses!
~tri
-------------------- ? date of bite/no rash 10/09 symptoms, 4/10 diagnosed, after 6 mos. ER visits, tons of docs/tests CDC+ 23/39/41/45/58/66/93 currently on oral plaquenil, doryx, rifampin, pyrazinamide, nystatin, numerous supplements Posts: 718 | From Pennsylvania | Registered: Jun 2010
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gmb
Unregistered
posted
I would slow it down a bit more to 10 to 12 minutes.
It's pretty easy... just a pain protecting it during a shower.
posted
I infused (IV push) over about 30 - 40 minutes. Any faster and I'd get dizzy, slurred speech, and other weird side effects.
IV Rocephin was just starting to help after about 7 months when I started having frequent gall bladder episodes, resulting in having my gall bladder removed. After that, all improvment slowly went away. So the gall bladder side effects are no joke--follow all doctor-issued precautions.
Posts: 398 | From By the Salish Sea | Registered: Dec 2008
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gmb
Unregistered
posted
AnnaL,
Did you take Actigal with the Rocephin? It's suppose to help support the gall bladder. I took Actigal all thru the IV and for two weeks after stopping IV Rocephin. I took Rocephin for 13 months, the switched to IV Doxy six weeks ago.
TX Lyme Mom
Frequent Contributor (1K+ posts)
Member # 3162
posted
Tri, I've got news for you. It's all about cost savings for your insurance company! Let me explain.
Our daughter used the old-fashioned slow IV drip method to save money because she did not have health insurance at that time. We bought our supplies in bulk and she mixed her own saline bags, etc. -- without the help of a nursing service which was too expensive. (She received her first IV in her doctor's office where his nurse taught us how to do it.)
Later, when she needed to use Rocephin again, she didn't want to have another central line put in again, so she took it by IM injections instead, one gram in each hip daily -- which is NOT recommended, BTW, because it can cause cellulitis. She did that because she couldn't use a PICC line since she had had a history of phlebitis in an arm vein from an IV given in the ER a few years earlier, so she had needed to have a central line inserted by a cardiologist instead when she did Rocephin the first time.
There are many ways to give Rocephin. We liked our way best because she could set her own drip rate. If she had used a nursing service, they would have speeded it up too fast for her. Time is money, you know.
Otherwise, she would not have been able to tolerate any of the IV antibiotics if she could not have diluted them into the larger full liter bags of saline and infused so slowly over 90 min. -- but she was a good bit sicker than the average patient when she first started her IVs.
Back to your situation though. Doctor's don't explain the cost factor. A slow "push" is a lot cheaper than the other popular method of using those expensive little pre-filled balls of Rocephin. Your doctor recognizes that you are healthy enough to tolerate it that way, so he's trying to save your insurance company some money so that they won't deny your coverage.
He's doing you a favor, and it's a whole lot better than resorting to IM injections because of the risk of cellulitis from IM Rocephin unless it's done exactly right by a nurse in the office. Too many patients get into trouble giving themselves IM injections of Rocephin because it is so caustic to the tissues.
We were lucky that our doctor trusted us enough to allow our daughter the opportunity to do things the cheap way on our own. He knew that she was capable of doing things carefully the right way. She had been a pre-nursing major in college before she got too ill to continue and had to drop out, and she studied the professional nursing websites to learn proper technique. That's why he was willing to risk his license to trust her as much as he did.
Posts: 4563 | From TX | Registered: Sep 2002
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posted
Depending on if your insurance covers the infusion service or not, mixing it yourself and doing a push over 20-30' is much less expensive.
My insurance approved 28 days and my 20% coinsurance cost more than 3 more months of mixing it myself. My new insurance pays for Rocephin vials thru prescription plan. My old one did not but 30 vials of Rocephin was only $100, plus supplies, flushes, and sterile water.
Posts: 120 | From MA | Registered: May 2010
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posted
gmb--I did take Actigall the entire time. Genetics could have been the main problem in my case--both my mom and brother have had their gall bladders removed. So maybe the Rocephin was just the push my genetic predisposition needed.
I might end up on IV doxy in the near future.
Posts: 398 | From By the Salish Sea | Registered: Dec 2008
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Rumigirl
Frequent Contributor (1K+ posts)
Member # 15091
posted
Pushing rocephin over only 5 minutes is NOT ok!!! Any nurse who taught you that, or infusion company who said it is ok doesn't know what they are talking about!!
And just because you didn't keel over or whatever doesn't mean that it is ok either.
sammy is right; the manufacturer says clearly to do it over 30 minutes. I do know one top LLMD who says it is ok to do it over 15 minutes. But 5 minutes??!! Whoa, not ok at all.
And for anyone who tends towards sensitivity or side-effects, 30 minutes (or longer, if need be) is MUCH safer.
Don't risk it for the sake of saving time. Your chances of gall bladder problems and lots more goes way up if you risk doing it that fast.
There are syringe pumps that push it slowly for you that some infusion companies carry, like Infuserve.
Your infusion company is just trying to save THEM money, not you. Be careful here. You've been through way too much already to risk any more problems.
Posts: 3792 | From around | Registered: Mar 2008
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The first round of Rocephin I started on a drip, and they switched me over to the push syringes. With the drip, I'd had a little bit of the flushing and itchy type of reaction with it. They told me to take Benedryl before I ran it, not a big deal.
With the push, no matter how slowly I did the thing, it was unbearable. No amount of Benedryl was remedying that. So if you tend to be prone to that reaction, it may be worse on the push.
Posts: 306 | From Brownsville, PA | Registered: Jul 2007
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I got my weekly call from my infusion company (they call every week...usually on a Thursday...to tell me about my next delivery, any supplies I need, etc.). Well, yesterday, much to my surprise, they said that they are now sending my rocephin in the Intermates (the baby-bottle looking things with the pressure ball inside that I had when I was on rocephin two years ago...). They said that they had received new orders from my doc (interesting, too, because they said that they first got an order for an IV drip...with the bag...then two hours later they got a change in the order from the bag to the Intermates). I had spoken with my doc's nurse last week about my concerns with the slow IV push. She said that she didn't think that there was a problem with the push, although she did admit that most of their patients, she thought, were on the Intermate type of administration. She said that she was going to check though and get back to me. I never heard back from anyone...my LLMDs office, my infusion company, etc....well, until yesterday...
Good grief!
So, my next delivery is scheduled for Tuesday, so I supposed that Wednesday, I'll be starting the Intermates...
'Never a dull moment, huh...ugh....
~tri
-------------------- ? date of bite/no rash 10/09 symptoms, 4/10 diagnosed, after 6 mos. ER visits, tons of docs/tests CDC+ 23/39/41/45/58/66/93 currently on oral plaquenil, doryx, rifampin, pyrazinamide, nystatin, numerous supplements Posts: 718 | From Pennsylvania | Registered: Jun 2010
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Thanks for the input!
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