I have had this drug many times before but always in a drip bag of saline.
I have had a Hickman line before and also peripheral canulars. I always have trouble with the peripheral canulars because they collapse on first infusion and over my Lyme years my veins have become scarred.

This time is different. I have a Hickman line but the infusions are from pre-filled syringes. The concentration is much higher than I have ever had before. Usually in the drip it has been 1g to 500-900ml saline.
In the syringe it is 2g to 20ml saline.

On the first day I had problems where it was painful between my shoulder blades but nothing I couldn't cope with. The second infusion 12 hours later caused breathing difficulties and severe pain in my chest and lung area. I had to go to the hospital (I'm having infusions at home administered by nurses) and have x-rays. I was told that there was some inflammation and that I would have to rest from infusions for the next 2 days while I had some anti-inflammatory treatment.
I started back on the infusions last night, had one this morning and one tonight (UK time) and they have been infused much slower, over 30 minutes. The pain is just a dull ache and I am not struggling to breath but I have a tightness in my chest all the time which worsens at the time of infusion and after for a while.

Does anyone else experience this? I have never had this feeling before and have had Rocephin infusions for the last 11 years on and off.

I know that there is a lot of speculation about the effectiveness of Rocephin but this is just a part of my whole treatment protocol that a top LLMD in the US designed for me along with my UK LLMD so my issue is not with the drug but I do worry about these sensations and breathlessness.

I'd better add that I already have respiratory problems but this is different to my normal symptoms and is only associated with the infusions.

W.

 

I agree with Lyme Ed..that sounds like an irritation of some kind.
I would check on that with Doc asap and probably ask for the saline drip as well.

Allot of people are really sensitive to high concentrations of Rocephin, and do much better with a sloooow drip..some patients even dilute it MORE than the typical bag, and drip slower.

So..I would imagine this push method would be hard to tolerate for some patients.

Then follow up to see if it continues.

Best,

Mo

[This message has been edited by Mo (edited 24 February 2005).]
 

At first we thought it might be an allergic reaction, but if so, wondered why it was delayed. It was scary and I ended up going to the ER once or twice because I felt like I couldn't breathe.

My doctor had me stick it out, it went away after a week or so. We never figured out for sure what it was, but our best guess is that the Lyme had taken up residence in my lungs, and it was a reaction to the die-off going on there. I had no other herx symptoms.

Hope this helped...

- Andrew

[This message has been edited by AndrewInCA (edited 24 February 2005).]
 

Lyme Ed and Mo,
Thanks for your response. I have asked for my doctor to arrange a drip. I just have to hope that he can do it. Medical treatment in the UK is so different and it is all about cost and convenience. The pre-filled syringes have a much longer shelf life and I have a special fridge for them which means they are delivered once a week. The drip bags have to be mixed in hospital laboratory conditions and have to be used in 12 hours. As I am having twice daily infusions, they have to deliver them twice daily from the nearest hospital. This is doesn't make the coordinators of my treatment regime happy!
I can only keep asking. :-(

Andrew,
you describe exactly what I am experiencing only for me it is during infusion and for some time after. The tightness is there all the time too.
I'm very glad to hear that your problem resolved itself after time.
As I said, I have had this drug more times than I can remember and never experienced this before and yes - it is very scary so I sympathize with what you felt.

Foggy,
I have had PICC lines before and they do seem to rub more than Hickmans. I guess this is because they are longer. I also experienced pain in my pecs with a PICC but this pain is more like it is between my shoulder blades.I have had pleurisy a couple of times and it feels like that. I don't think it is the line itself because it is only during infusion and after but I guess it could be a spasm that is induced by the infusion.

Thanks to you all for your replies. It is good to know that others have had the same experience and come through it.
The doctors are keeping a close eye on me but what is most scary of all is that I know my own body and when I tell them something isn't right, they never seem to listen.That is what got me in this mess in the first place!
W. x