Remicade infusion from hell

So, it happened again, collapsing veins, and infiltration into my arm, had to restart it 3 times, the last being the top of my hand, which was a whole new level of pain.
I am thinking about seeing if they can install a port, otherwise, I will probably have to discontinue Remicade infusions. The infusion was 3 hours with the stops and starts…

That’s not good. Would they install a port? I’m guessing though staying on remicade is really the real goal whatever though. Can it be done using veins elsewhere, like in your leg? Just thoughts really. Poor you.

A surgeon would install a port, it is under the skin so not visable. It is commonly used for chemo treatments, as the stuff corrodes the veins. I guess the hardest part would be getting insurance to pay for it. If we could find out why the veins are collapsing, and be able to reverse it, that would be ideal. I tried drinking a electrolite drink called “liquid IV” before the infusion, but it had little effect. It seems to be worse when I am having a Raynaud’s flare, once I go to the Erythromyalgia flare, my veins are huge.
I had a PICC line installed a couple of years ago, when I had staph infection, it was a little cumbersome, with tubes hanging out of my arm, the port sounds doable. It would also make it easier for blood draws. One time the nurse took 45 minutes to draw my blood, I felt like a pin cushion! She was cussing up a storm too, I kept telling her, “the doctor walked by, he was laughing…” :smirk: She almost gave up, then tried it once more and got the blood to flow.

Know the drawing blood issue. My veins permanently hide. The only ones good enough to take bloods easily are the people in the specified department in my local hospital. Thankfully it’s a walk in service, just take a ticket and wait. Usually I’m in and out within the 20 minute free parking period. Anyone else, I can be there for 45 minutes too and come out looking like I’ve done10 rounds in a boxing ring. But obviously as yet I don’t have infusions, nor veins collapsing, mine just hide.

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I wonder why the veins hide like that? I will have big juicy veins the night before a blood draw, the next morning not a trace! Even drinking lots of water, does not seem to help much. Maybe it is the bodies way of saying “I am not giving up a drop!” Or with the Remicade, “nope, you are not squirting in anymore of that genetically modified mice cells in me, no ser ree!”


No idea Jon, my veins have always hidden (pre PsA too) and I’m a big water drinker too just generally. But those guys at the hospital blood letting clinic always find them. At least they do, cos no one else finds them!

They would always bring out the intern to draw blood, when I went to the Scripps lab, it was amusing the first couple times, but now I just ask for the best Phlebotomist present! They only give the girl one try anyway, but when the start probing around or go all the way through the vein in the hand, it hurts bad! I have had this since I was little, I remember a doctor chiding me for my chubby arms, because he could not find the vein, I was probably 10 years old. Funny how you remember the jerk doctors in your life! So many memories! :face_with_raised_eyebrow:
I was a Navy brat, so always went to the navel hospital, the doctors did not have good bedside manners, they were down right obnocious…


So sorry y’all have blood draw issues. I’ve always been told I’m a phembotomist dream. Yay. I suppose a good thing when they are drawing blood with the large bore needles. Ya know the ones that look like a drain pipe :flushed:

I had a port when I was doing chemo. It saved my veins. (That nasty stuff is pretty caustic too) It was visible but not horribly so. Just a 3/4 inch or so round lump under the skin on the right side of my chest below the collarbone. If I wore tank top or something like that it was there for all to see. (I’m not real meaty so it may not be visible on everyone) But as an FYI, when I went in for pre-infusion blood work they drew from my arm, not the port. When I asked why I was told that not everyone is ‘authorized’ ‘allowed’ ‘whatever’ to access the port. And out came the drain pipe. :thinking: But that was many, many years ago and protocol may now be different. My doctor had me keep the port for a good year after I finished chemo ‘just in case’ but, since it was not being used frequently, I had to go back every 4-6 weeks to have it flushed. Otherwise it clogs up with stuff and would be unusable. I also understood that if it needed to stay there long term it may need to be replaced at some point. But I don’t know what ‘long term’ was. All in all I think I had mine over two years.

Hope this was helpful. And good luck! :four_leaf_clover: