Have any of you ever been on IV meds for only a month?
I've been treating my Lyme for about 7.5 years and Elrichia for about 3. The majority of that time has been with oral antibiotics. I did use IV ceftriaxone for about a year in 2010.
My doc has been trying me on various combinations of orals and herbals for the past several months with little improvement. If fact, I seem to be getting worse again.
He wants to start me back on IV (ceftriaxone). However, my insurance company will only approve and pay for 28 days. I can't afford to pay out of pocket beyond that.
My question is, has anyone else ever done IV's for such a short period of time... and if so, was it worth it? Will it make any difference, or should I not bother wasting my time?
Last time I had a groshong catheter, this time it will be a PICC.
I'm getting very depressed about the fact that none of my treatments seem to be helping and I seem to be getting worse. I really don't want to be on medication for the rest of my life and still continue to lose all the progress I have made in the past 7 years!
-------------------- I can do all things through Christ who strengthens me.+++ Diagnosed with Lyme in 2005. Suffered for years before that. Still treating/fighting it. Son diagnosed with Lyme and Babesia in 2007. Son diagnosed with Asperger's in 2011. Posts: 40 | From Maryland | Registered: Jun 2008
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Summer3
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posted
I am in the same position. I asked two doctors (well-known ILADS doctors) about this at a conference. Both said that it was better to stick with orals slow and steady than to do IV's if you could only do it for a month.
They didn't feel like it was beneficial to do it for a month and advised to only do IV's when all co-infections are under control and only if you could pay for it long-term.
One even claimed that 90% of his patients get better without IV's.
That being said, I've been on orals for a long time too and feel like I keep getting worse. So I guess I'm in the 10%.
posted
There are less expensive options if you need to pay yourself. My insurance pays 28 days which ends Thursday.
I can do Infusionamerica for $699/month with homeballs, dressing changes and everything I need or get the generic Rocephin for $100/30 days of vials of 2 grams.
Price for generic Rocephin various a lot from $2300 to $100 for same dosage. Some folks insurance pays 28 days but will cover drug through drug plan.
Depending on what your doc will allow you can use IV bags and add drug in after reconstituting it or do an injection in 20 or 30 cc syringe. Later I was told was least expensive.
Picc dressing changes are about $21/a week.
You would have to find someone to change dressing. I have heard of friends doing it who are RNs, training family or arranging with home health agency going to their office.
It is possible depending if you have any benefits that it could be under $200/month without insurance.
Good thing is your insurance will pay for your picc.
Good luck!
Posts: 120 | From MA | Registered: May 2010
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Summer3
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I had always thought the cheapest was the $699. Where can you purchase Rocephin for $100? Is that with insurance covering it?
If that's the case and it can be done in an IV push, I think I would go on it long-term in the future.
posted
I called around for pricing after checking my insurance prescription drug coverage and finding out it would not be covered. I have heard some can get Rocephin thru drug coverage for just a $20-30 copay.
CVS checked my insurance and said generic was $2300. I went to Target where I'm friendly with Pharmacist and asked him to check and advised him generic manufactures pricing various. He searched around and found 3 different generic mfg and the cheapest with a discount program was $100 for 30 vials as cash price.
Different options to get get drug into your body. It was explained to me either mix and put in saline bags or mix in large syringe 20 or 30 ccs and inject. The later way is cheapest. With saline bags you need more supplies with tubing and syringes.
Ask at your specialist office what they will allow.
Check your health insurance to see if it will cover the medicine thru prescription program as it can be well under $100/month if covered.
Posts: 120 | From MA | Registered: May 2010
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Summer3
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Thanks trimom,
That's good to know. Maybe I will be able to figure out a way to try them in the future. Did you do IV's after all your co-infection symptoms were completely gone or before?
The infusion company is checking with my drug program to see if/what they will cover even after the initial 28 days. And, of course, we're still waiting to see if even the first 28 days are going to be approved.
-------------------- I can do all things through Christ who strengthens me.+++ Diagnosed with Lyme in 2005. Suffered for years before that. Still treating/fighting it. Son diagnosed with Lyme and Babesia in 2007. Son diagnosed with Asperger's in 2011. Posts: 40 | From Maryland | Registered: Jun 2008
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Summer3
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posted
You can get a 30 days supply of a 2gram vial of Rocephin (or Generic) that you can mix your self.
Except some states make this difficult in getting the rest of the IV stuff and the home infusion companies make it sound like rocket science and will not help.
I found it tougher to get the supplies than the meds. And ended up changig my insurance policy to a more expensive plan and going traditional route. I figured the insurace company would milk me for the weekly premium or the larger deductable and out of pocket co-pays.
I was lucky my employer offered two levels of coverage to choose from.
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I have lyme induced RA. My doc is putting me on IV Clindy for 5 days per month and oral abx in between. I checked with my insurance, BCBS, they said they would pay as long as needed, no time limit. But must be coded right. They are coding mine as microplasma infection.
I only had one week so far. The week of IV's, I felt no different, just more tired. Then the week after, I felt GREAT. Then symtoms started slowly coming back. :-(
posted
Insurance approved 4 weeks, but only 4 weeks. Rx plan will not cover drugs after that point either.
4 weeks (dosing 4 days a week) is better than none? maybe?
*sigh*
-------------------- I can do all things through Christ who strengthens me.+++ Diagnosed with Lyme in 2005. Suffered for years before that. Still treating/fighting it. Son diagnosed with Lyme and Babesia in 2007. Son diagnosed with Asperger's in 2011. Posts: 40 | From Maryland | Registered: Jun 2008
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posted
I was on IV rocephin for six months back in 2007 and 2008 but had to discontinue die to gallbladder problems. When I went back on them 8 months later they were totally ineffective.
The NY doctor I was seeing told me ahead of time that the second time around usually doesn't help at all but I wanted to try anyway. I stuck it out for 3 months without any progress so quit...I was dosing every day.
Posts: 343 | From North Carolina | Registered: Oct 2008
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posted
I was on IV rocephin for six months back in 2007 and 2008 but had to discontinue die to gallbladder problems. When I went back on them 8 months later they were totally ineffective.
The NY doctor I was seeing told me ahead of time that the second time around usually doesn't help at all but I wanted to try anyway. I stuck it out for 3 months without any progress so quit...I was dosing every day.
Posts: 343 | From North Carolina | Registered: Oct 2008
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posted
I called my doc and told him I've decided the picc isn't worth it. I also told him that I'm going to stop my orals for a while. My stomach has not been tolerating them (major heartburn and nausea, including some vomiting) and I just can't stand it anymore.
The receptionist took the message, we'll see if he calls back or even cares.
I hate this disease!
-------------------- I can do all things through Christ who strengthens me.+++ Diagnosed with Lyme in 2005. Suffered for years before that. Still treating/fighting it. Son diagnosed with Lyme and Babesia in 2007. Son diagnosed with Asperger's in 2011. Posts: 40 | From Maryland | Registered: Jun 2008
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gmb
Unregistered
posted
When any on you talk to a pharmacy person about getting the 2 gram vials of Rocephin say its for IM injection. Mentioning IV creates more insurance issues and puts the claim into a differnt bucket. And never say you plan to mix it at home.
I'm approaching 1 year on IV Rocephin (2g twice a day 4 days on, 3 days off) and my PICC line is still in good shape. Orals include Zith, Bactrim DS, double dose Mepron, and I recently added Tindamax.
Every time I start seeing some improvements my LLMD adds something new or increases dosage. This is a tough battle.
Lucky to be in RI where insurance has to cover Lyme related ABX tx within policy deductable and co-pay schedules. I pay for a high level plan with only a $500 in-network deductable and no co-pays except for Dr visits, ER, and Rx.
Of course my LLND is out-of-network and does not take insurance, and being on IV I need to see her more frequently than if I was just on orals.
The only issue I have with IV is the timing of morning and evening infusions. I do a 20cc push over ten minutes (2 cc/minute), so start to finish with the saline, ABX, saline and Heprin lock is about 20 minutes.
I experimented with putting a 20cc syringe in a small cooler with 6 or 7 ice cubes before bedtime so upon awaking at 4:45 the ice was melted and Rocephin was just starting to warm up.
6pm infusion takes a bit longer due to Rocephin warm up time from fridge to PICC.
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