Questions for Dr. R (NY) patients taking IV Rocephin - Lyme Disease Message Board

tickbattler · 04-12-2008, 06:57 PM

Hi all,

My husband is starting IV Rocephin in 2 weeks. We know nothing about IV and are trying to decide whether to get the line inserted locally or drive 2.5 hours to NYC from Chester County, PA for Dr. R's office to insert it. For those of you who go to Dr. R, did you have his office insert it? If you went locally, did Dr. R's office set it up for you?

Another question I have is how much do you pay for the Rocephin through Dr. R? He told us it was about $140 /day but I saw on some posts that there is generic available for much less. Did you buy it through the infusion company Dr. R recommended or did you locate it somewhere else? Do you need to do any mixing with the Rocephin? He showed us a little ball with a tube that would attach to the picc line. Is that all there is? I can't see my husband doing any mixing unless he absolutely has to. Please let me know who you used and how much it was and whether you had to do any mixing.

By the way, if any of you are from Philly suburbs, I'd love to hear what infusion company you used too!

Thanks,
tickbattler

Kelly5907 · 04-13-2008, 05:48 AM

Hi... I see Dr. R.. I had my Picc inserted at a local hospital.. Dr. R's office did most of the work along with the infusion company and my insurance company.. Being my insurance paid the first 90 days of treatment we used a infusion home care company (Apria) for all the meds and nursing care.. After my 90 days I bought my meds from a infusion company at a much cheaper price.. Good Luck.. I hoped that helped a little bit

Kelly

smith20 · 04-13-2008, 12:50 PM

Hi tickbattler....
I am also about to start on Rocephin IV. Dr R's office set it all up, but I am having my line inserted locally at a hospital in Delaware. Then I believe I am having home nursing care - also all set up by Dr R's office...and meds from Infusion Specialties.
I am having the line in on Tuesday so I will let you know how it goes.
I hear that Chester County hospital is very good - I had a SPECT scan there - in West Chester, PA. I am sure they can insert the PICC line.
Remember, PICCs are used for many other drugs including Chemotherapy, so you don't necessarily need a Lymes specialist to find someone competent at inserting the PICC. Plus if you have problems (which I believe is very rare) then you can go back to the place that put it in much more easily....
When I have my PICC inserted, I will be getting there & back by myself, which is why I didn't like the thought of the long trip back from NY....but if you're able to drive your husband, maybe NYC is not a bad option for you?
By the way - I bought the waterproof arm covers (for showering etc) in advance......I know there's a lot to think about right now but I thought it would make the first few days easier to handle if I didn't have to worry about stuff like that. You can get them online from Brown Medical....the Mid Arm protector.
Best of luck to you & your husband! Its nice to hear that he has so much support from you.....!
Sarah

tickbattler · 04-14-2008, 06:01 PM

Thanks so much for your info Kelly and Sarah - I think we are going to use a local hospital too - either Chester County or Paoli, which are both near us. We had a spect scan at Chester County and Dr. R was very impressed by the hospital doctor's assessment of the scan since he reported that the result was potentially indicative of lyme disease!

Good luck with your picc line Sarah. Please let us know how it goes. And thanks for the reminder about the arm protector. I will order one tonight! If you find that any other equipment is useful to have, please let me know.

Best,

tickbattler

ryebeach · 04-21-2008, 02:23 AM

Quote:

Originally Posted by tickbattler

Hi all,

My husband is starting IV Rocephin in 2 weeks. We know nothing about IV and are trying to decide whether to get the line inserted locally or drive 2.5 hours to NYC from Chester County, PA for Dr. R's office to insert it. For those of you who go to Dr. R, did you have his office insert it? If you went locally, did Dr. R's office set it up for you?

Another question I have is how much do you pay for the Rocephin through Dr. R? He told us it was about $140 /day but I saw on some posts that there is generic available for much less. Did you buy it through the infusion company Dr. R recommended or did you locate it somewhere else? Do you need to do any mixing with the Rocephin? He showed us a little ball with a tube that would attach to the picc line. Is that all there is? I can't see my husband doing any mixing unless he absolutely has to. Please let me know who you used and how much it was and whether you had to do any mixing.

By the way, if any of you are from Philly suburbs, I'd love to hear what infusion company you used too!

Thanks,
tickbattler

Hi Tickbattler
I was just checking to see how your picc insertion went .
Some insurance companies will cover almost all of the expenses and provide nursing care to change the dressings once a week .
I have the meds delivered right through the infusion company to my house with a courier every week .
I would check with Dr R about the generic forms since some differ depending on their composition
I have had one for almost a year and a half I had to have it replaced once but have not had any trouble with it other than that
It may be a little sore in your arm at first but a little heat and some ibruprofin will relieve that for you.
Thank goodness spring has finally arrived . I always feel a little better when it is warmer . Really fatigued lately though
In New Hampshire we had the most snow in almost 1000 years and I ached all over .
Let us know how everything goes and good luck
Take care
ryebeach