Anyone ever had pain on doxy infusion? Today I asked that my infusion be stopped, then the pain stopped. Tried starting it again, and in a minute the pain came back again. The pain feels like someone socked me in the shoulder and then kept their hand pressing hard over where they hit me.
My picc line is only in as far as my shoulder now (I can tell), but the radiologists say this is ok. The picc line had been in farther, but the line keeps easing its way out due to lack of use . . .
This picc line has been in nearly three weeks with only one dose of Rocephin to which it was determined I was allergic.
This line got clogged and I was terrified, but the oncology nurse was able to get it to flow again on second try.
Even though I was instructed to use one saline flush and two heparins the line became sluggish again, so I started Coumadin. Flushing is easier now.
Then today this pain on infusion. Could it be a clot? If so, what to do?
I haven't been on this site in a long time, but it's a good place to find answers, input, experience. THANKS!
Posted by Sammi (Member # 110) on :
When I did IV Doxy it was through a port. I was told it can be caustic to the veins so a port would be best.
I don't know if this is what is wrong, but you should definitely let your doctor know you are having problems. You don't want to take any chances with an IV line.
Posted by Lymetoo (Member # 743) on :
I hope you have called your doctor!!
Can you give us an update?
Posted by mjo (Member # 7876) on :
My doctor came to see me after the nurse called her. We were doing this first infusion of doxy in the hospital because of all the trouble with Rocephin, which I'd had earlier this year with no problems!
Doctor's take today was that my body had had enough and was going to react to the meds it had had before. She suggested trying Zith, but I don't know with all my hearing loss tinnitus. Risky.
I had doxy IV too for several months along with Flagyl and Ceftin and had done so well we were going to give it two more weeks, then switch to orals, but my liver enzymes went quite high.
First we stopped the IV, then the oral meds, then all my supplements, so I went about a month before the enzymes went back to normal and I could start on Rocephin again instead of doxy.
After a couple days, the Rocephin infusions started causing burning/pins and needles all up and down my arms on my chest and neck. It would start about ten minutes into the infusion and last for hours afterward.
I didn't want to complain, but finally spoke up after two weeks of the burning. A friend thought it might be the line, so that line was pulled and a new one inserted, but the burning started all over again on the first infusion of Rocephin, so that drug was out.
More time off meds until my doc got back from vacation. Then okayed trying doxy again. Now this today. I feel like world's worst Lyme patient!
About this picc. It was a whole week before I could move my arm! The guy who put the picc line in had the tourniquet so tight around my biceps that I had to clench my teeth to keep from crying out. I even said through my clenched teeth, "That's awfully tight," but he didn't change it. I finally figured out that was why my arm hurt so much for so long.
Now I wonder. Could he have done some deep tissue damage? Squeezed the line? Bent the tip?
Maybe it is time to take a break?
Thoughts tutu? Glad to see you're still here and as thoughtful and kind as ever.
mjo
Posted by sammy (Member # 13952) on :
You should not have pain with your PICC line infusion. Please let you doctor know. It sounds like your line has migrated out too far to be considered a "central line". Your doctor may want to change to a less caustic med or order a new PICC line placement. Sorry mjo, I know that this was not what you wanted to hear.
(PICC= peripherally inserted central catheter)
Posted by Lymetoo (Member # 743) on :
Well... I thought that name was familiar! Didn't notice the Sep 2005!
How have you done while on orals? Any luck?
Glad you are having this taken care of in the hospital!
Posted by mjo (Member # 7876) on :
Hey Tutu,
Yup, it's me. Still battling. Orals just never did the trick for me. After four years and a few months I went back to IVs and did well!
Bicillin had gotten me started in the right direction. After 10 years of fibro pain the Bicillin took it away! I sure hope it's gone for good.
Sammy. I've been thinking exactly what you're thinking that the line is out too far, but I was assured by an anesthetist (sp?) on Monday that as long as the line's not in the small veins the infusions should be just fine.
Sure was weird when one of my flushes was a little cold and I could feel the cold in my shoulder! Usually, if a flush or the med is cold I can feel it on my arm near the infusion site for a few seconds, but never up my arm or in my chest.
I agree with you too, that there should not be pain on infusion. Never had pain in nearly 8 months with the other line.
Any more thought Sammy?
Thanks Tutu too!
Posted by sammy (Member # 13952) on :
The burning is not a symptom that you can ignore. (You certainly would not make it up either!) The easiest explanation is that the line has come out too far. If it really is in the correct position then maybe you have a small hole or tear in the line. It could be a tiny manufacturing defect not seen at the time of insertion. Or it could have been caused when the oncology nurse tried to clear the clot. There might have been too much force/pressure used.
It sounds like you know what is normal from having had another PICC line for 8mo before this one.
Is this burning the same feeling you got with the Rocephin? (I just noticed your 10:29pm post, sorry.) Or was that more of a burning/tingling generalized med reaction and this is an acute burning acid in my veins feeling?
I wish I had some answers for you. It is scary and frustrating having to deal with these things. I hope that your doctor can figure something out.
Posted by mjo (Member # 7876) on :
Sammy,
The burning/pins and needles feeling only happened after Rocephin. Never had it from IV Doxy.
The socked in the shoulder pain came from the first infusion of Doxy after the long break, and I never had any feelings of burning or pain in prior infusions of Doxy.
I'm thinking about asking to talk to the anesthetist and maybe the oncology nurse.
Any more thoughts anyone?
Thanks! Feels good to know I'm not in all this alone, easy to feel that way sometimes, isn't it?
mjo
Posted by manderson7185 (Member # 27787) on :
I was on a PICC line for ceftraxione last year. When they put the line in, I told them I could feel it. The nurse didn't believe me until she took the xray and it was exactly where I said I felt it. Also, I could not move my arm without pain. The nurses said that would go away and not to worry.
Then I'd do the daily treatments and have this terrible burning pain. Again, the nurses said it would go away.
A week later, I started noticing fluid under the bandage around the line. Doctor thought it had become infected so I had to get it removed. When the nurse tried to pull it out (it should slide out effortlessly), it was stuck. My vein was too small for the line.
They put a new one in the other arm and I never had a problem with it.
Also read somewhere else on here that someone had a problem with PICC line and her veins so she had to get a port.
Posted by lou (Member # 81) on :
That might have been me that had the trouble with getting first PICC installed. But that was being attempted by a nurse, and my veins are too deeply buried for this to work. A long time later, a radiologist inserted a PICC and that was much easier.
So, maybe you should consider having it done by a radiologist if it has to be redone.
The only pain on infusion that I had was from doxy, for the reason that someone else mentioned. This can be helped by diluting it more or slowing down the rate of infusion.
Posted by dmc (Member # 5102) on :
Have you had any ulta sounds on the line? My burning and ache was do to a long thin clot OUTSIDE along the PICC line.
I had done too much since I felt so good. I'm a huge proponant for Tigecyl.
4yrs of orals helped but 4months of IV Tigecyl put me in remission.
I was Lyme/Babs/Bart dx w/ 17yrs "MS" prior to find out it was TBIs
Posted by mjo (Member # 7876) on :
Lou,manderson,dmc.
I've been thinking a lot about clots, and maybe that's what it is.
The infusion nurse asked if the doxy could be more diluted or run in slower as you suggested lou, but with the pain starting up again when the infusion was restarted I guess we didn't get there.
dmc. Please tell me more about the Tiger. I tried to suggest it once to my doctor, and I saw Stony Brook came out and said it wasn't effective after a Brorson? study had found it highly effective in vitro. (Wonder who put the money behind Stony Brook?)
Thanks ALL!
Posted by jwall (Member # 22999) on :
mjo, I just went through a similar situation with my first picc line. It was inserted in my left arm. Later, I found out picc lines should always go in the right arm...shorter distance and less curves to get to the right spot.
Anyhow, I didn't have burning like you, but I had weird things happen when I infused meds...like I would feel my neck start to swell up a bit (not allergy swelling...like liquid was flowing in that area). I had 2 x-rays. Everyone said it was in perfect position. It hurt when the picc was placed and immediately, I complained of chest pain/pressure. For 6 days, I endured this pain/pressure, couldn't sleep lying down, couldn't walk around w/o hunching over, infused meds and was almost as if I'd go into shock when infusing (was told it was a herx), developed widespread numbness (told was a herx) until finally I went to the hospital here and they did an ultrasound and found a blood clot around the line up in the collar bone area. I can't believe I toughed it out for 6 days. The picc was pulled and my widespread numbness immediately went away. Scary. I have a post on here before I had it pulled and I was almost in panic attack mode.
The moral of the story is listen to your body. You know when something is not right and if you know, tell them to get that thing out of you right away. I had another placed in my right arm and all is well now. I had a radiologist place the 2nd one (it still hurt going in) and I had severe heart palps right away. I complained and they pulled it out 3 cm. Now I know what a normal picc feels like.
I, too, felt like a difficult lyme patient. I hadn't even started treatment and here I was complaining already! I was also placed on a blood thinner.
Best wishes!
Posted by mjo (Member # 7876) on :
Update!
I am fine. Thank you all for your advice. Turns out everyone was a bit right.
Here's what happened:
After mulling over everything everyone offered I went into the oncology department of the local hospital where I've been receiving my infusions. Best nurses in the world by the way! There I talked everything over with my favorite nurse.
I told her I doubted it was the med, thought it was the new line. She listened dutifully and thought I was right to want to speak with the anesthesiologist who had been quite good with me, though he wasn't the one who'd put this line in. (He's had Lyme too.)
We reached him at home. I told him what had happened and he seemed to know right away what was wrong, and said he'd be right in to get it taken care of! (The joys of a small community hospital!!) He wasn't even on call until later in the day!
He explained that the line was likely touching the junction of the smaller vein (in which the line had been placed) and the larger subclavian vein and that the doxy was not dilute enough because of the lesser blood flow of the small vein. He said when that happens it can cause the vein to spasm causing severe pain. He also noted what I'd told him about being able to feel a cold flush right there in my shoulder.
Because I'd had no infections with my picc lines, and because I would be getting a doxy infusion right away, he felt that with proper careful cleaning--he specified iodine swabs I think and sterile gloves--he could simply advance the line back into position or at least several inches in so that I wouldn't have the pain again.
This took some time, but we were successful! No pain on the doxy infusion.
Thanks again all. I think we learned something here. I am grateful to all of you and to the two caring health professionals willing to make extraordinary efforts for me to receive the care I need.
This is not in any way a recommendation that you should follow a similar course of action at home!
Posted by Haley (Member # 22008) on :
MJO -
I'm glad you got it sorted out. I'm curious did you ever find out what caused the Rocephin pins and needles.
I was on Rocephin off and on for a few months. I got infusions in an IV room through my veins. I never had any problems and felt good on Rocephin.
Then I had a port put in my chest. The first infusion caused pins and needles and burning. We tried other things, vitamins and other meds - no burning. I stopped the Rocephin even though it was not painful, it was just odd. I thought that it was because of yeast.
Did you always have that feeling with the Rocephin?
Posted by sammy (Member # 13952) on :
Yay mjo! I'm so glad that everything has worked out for you.
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