IV placement in hands when you have Scleroderma and Raynaud's?

Posted by irishponies @irishponies, Dec 13, 2022

Hello,
I am undergoing Rituxan infusions for ANCA vasculitis, systemic sclerosis (scleroderma) & mixed connective tissue disorder. The IV is in place an average of 6 to 8 hours.

Rheumatologist & dermatologist told me NOT to have IV placement in my hands/wrists due to high gangrene/ulcer/etc. risk. There have been MANY infections/ulcers in my thumbs/fingers requiring lengthy treatment to resolve. I am quite fearful of an infection the back of my hand/wrist from the lengthy IV placement.

I have repeatedly told the different nurses at the infusion canter that the rheumatologist & the dermatologist have stated "NO IVs in the hand". I ALWAYS receive eye-rolls and dirty looks and the occasional, "That is not true." I am NOT going to allow a hand IV regardless of the eye-rolls, etc. I am the one that will have to deal with the resulting infections.

Last Wednesday I had an infusion. The nurses repeatedly asked to put the IV in my hand and/or wrist. I stood firm with "NO". I have another infusion in 9 days.

Is anyone on the group aware of a handout or even a page from a website that I can print out and bring with me to give to the infusion center nurses to convince them that I cannot have an IV in the hand? Just point me in the direction to look and I'll find it!

Thank you so much everyone.

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Mshutch | @mshutch | Dec 13, 2022

Ask one of your providers to add a FLAG to your chart that says "no IV's in bilateral hands". Or whatever it should say. The other thing you could do is request a pink arm band that says "restricted extremity". And ask the staff to add "hands only".
The nurses probably know very little to nothing about scleroderma.
How many of these treatments will you have and for how long? I would think they would consider a PICC line. It is a line that goes in at the bend in your elbow and is intended for more frequent or long-term use.

cmd | @cmd | Dec 17, 2022

Try having a port put in

hopeful2 | @hopeful2 | Dec 18, 2022

Get a note from the RA specialist stating this restriction. Have it laminated and put it in your purse or wallet. Also, have it officially entered in your medical records documents at all the hospitals that you would possibly interact with. Also, put a copy in all your glove compartments. Also, send a copy to your local ambulance companies return receipt. Something as easy as a note on a prescription pad is sufficient. Never and I mean NEVER depend on being successful in convincing any medical personnel what another doctor has instructed for your welfare. The RA trumps the IV lab and any other doctor that is not a RA specialist. This advice applies to anyone with any condition that needs special attention. What if you are unconscious? You should also have a medic alert bracelet with the same instructions on it. You are absolutely right. You are always stuck with the consequences. I like you. You have spunk. It will save you and whomever you may advocate for.