IV Rocephin -- Feedback Please . . .

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Keeping the Faith
Regular Member


Date Joined Nov 2008
Total Posts : 77
   Posted 2/27/2009 4:16 PM (GMT -7)   
Hello Everyone,
 
My daughter's lyme neurologist is going to be starting her on IV Rocephin next week.  She is a different case than most because she is positive for Factor V Leiden Mutation (elevated risk of venous thrombosis) so a PICC line and port are risky.  Her doctor decided that the best way to handle this right now is to do a regular IV each time she gets her dose and is going to push the solution through a syringe into the IV.
 
Has anyone ever received this medicine this way?  I don't know how long we can do this method without having a PICC line put in.  We are also seeing a hematologist on Monday to discuss this genetic factor and how to handle anti-coagulation, so perhaps there will be a better solution for us.
 
Any comments would be appreciated.  Thank you!
 
Lisa

ktp812
Veteran Member


Date Joined Jul 2007
Total Posts : 715
   Posted 2/28/2009 6:02 AM (GMT -7)   
I am on IV Rocephin and it needs to be infused over at least 30 minutes. I used a pump my first time around and now I am using IV bags and set the drip to somewhere between 30-40 minutes. That is how my doctor told me to do it. I am not sure if you can do it quicker than that or not. I know they are just pushing it through but I don't believe it can be done that quickly unless they are going to do it slowly.

kelly1234
Regular Member


Date Joined Dec 2008
Total Posts : 51
   Posted 2/28/2009 4:46 PM (GMT -7)   
Hello,

I was on IV Rocephrin for 6 weeks. It was done at my lyme doctors office exactly as you described. I went 4 days per week and it took 1 1/2 to 2 hours per visit

Keeping the Faith
Regular Member


Date Joined Nov 2008
Total Posts : 77
   Posted 3/1/2009 8:42 AM (GMT -7)   

Thank you very much for all of this information.  Today is a really down day because of the weather and the fact that she broke out with something during the week and we don't know what caused it.  It sort of looks like a bartonella rash, but it is not identical to what pictures I have looked at.  It is now fading, but was itchy.  She was on minocycline and cipro and the doctor stopped both of them because of what happened.  We waited a couple of days, and started a new med, Doryx 100 mg BID as this will be the oral she will take along with the IV.  Well, this a.m. she said her throat felt funny and her tongue felt like it weighed 20 pounds.  I am very scared and won't give her another dose, because it seems like she has developed an allergy to the "cyclines" now. 

After reading your posts it made me feel a lot better that this can be done the way the doctor said.  We are seeing the hematologist tomorrow (in the predicted noreaster) and hopefully will get more positive news as to how to deal with this issue.  I am very worried about her being off all meds and this bacteria multiplying, etc.  I can't wait for the IV to start.

Tracy Will -- I am going to let you know how we make out tomorrow and hope you will share your story will us, too.  I have encouraged Marissa to register on that website, but she is very nervous about what will go on this coming week.  I think it will do her a lot of good to chat with other patients where she can learn about what they are going through and can share her worries, etc.

Thank you very, very much -- all of you.

Lisa


Keeping the Faith
Regular Member


Date Joined Nov 2008
Total Posts : 77
   Posted 3/2/2009 6:54 AM (GMT -7)   
Hi Tracey,

We are in southern CT and won't be getting as much as you, but it is still a lot! She has an abdominal ultrasound this a.m. and the facility right up the street just called to say their technician won't be in today. Luckily, the facility in Branford could take us at 1:15. Now I have to hope the hematologist will be there at 1!

Marissa is 16 soon to be 17 years old. Entire life on hold -- can't go to school (being tutored), no drivers education yet, no dances, and 13 years of dance classes stopped. These are all things that don't seem like they should be important in the grand scheme of things, but as a young girl it is very upsetting. She has sort of accepted the way things are and is in her "comfort zone" right now. I don't like that she feels like this. I truly believe with the slightest improvement her attitude will change. She won't go back to formal school this year, but I want her back for her senior year.

Hey listen, a blood clot is not something to take lightly. You should get yourself to wherever your doctor wants you to go and take whatever meds they think would get you through the time from now until you see your doctor. What is your email address? I can email you the results of today and maybe we can chat that way since we have so much in common.

Talk to you soon.

Lisa

kelly1234
Regular Member


Date Joined Dec 2008
Total Posts : 51
   Posted 3/2/2009 8:26 AM (GMT -7)   
Hello Lisa,

I cannot imagine having to go through this with my daughter. I have a 17 year old. My thoughts are with you. I mentioned in a previous post that I had IV Rocephrin 4 days a week for 6 weeks done in my lyme doctors office with a regular IV each time. I alternated arms and on average had to sit there 1 1/2 hours. It was not as bad as I had imagined and it was nice to go home and shower etc without something hanging out of my arm.

Keeping the Faith
Regular Member


Date Joined Nov 2008
Total Posts : 77
   Posted 3/2/2009 1:45 PM (GMT -7)   

Hi Kelly,

Thank you for the encouraging words.  We're not sure which route we are going to go with.  I think if we start this week it will have to be with a regular IV like you mentioned.  A PICC line is not out of the question, but will have to wait a couple of weeks to do.

Tracey -- We went to the doctor today and they had to draw more blood to do a more extensive clotting analysis.  She is heterozygous so she has the genetic factor from only one of us.  There is some risk, but not as much as if she were homozygous.  If we do the PICC line the doctor would want her on some sort of low does blood thinner.  She said that a clot in the arm is not as dangerous (going to the lungs) as one in the leg, and she concerned because she is in a wheelchair and not moving around so a clot may form just from not moving around.  We'll get the results on the 9th.  Talk to you soon. 

Lisa

 

 

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