IV placement in hands when you have Scleroderma & Raynaud's

[irishponies]

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 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 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.

[OldTed60]

I don’t have any information that would help and I don’t get digital ulcers or calcinosis but I do have Scleroderma and Sjogrens overlap with secondary Vasculitis.

This year I was given IV immunoglobulins twice - a week each time. Had a severe skin reaction to it so can’t have it again. Now my rheumatologist is hoping that I’ll start Rituximab in spring. I am already in max dose of Mycophenolate.

I also get Iloprost infusions for Raynaud’s so lots of cannulas. I find when they keep trying to use my hands despite me begging not to. For me it’s not infection it’s the pain. But they just look at me like I’m making a big fuss and should just put up with a bit of discomfort. But it’s actually excruciating rather than discomfort. They tell me longer I refuse, longer they will take to get me running each day. But I’ll only last one day infusion at most - often a vein blows.

I think it’s because of easy/ visible access they always want to use my hands so was thinking I need more information about scleroderma and Raynaud’s hands maybe. I seem to have arthritis in knuckles and my hands are very lacking in padding now rather than swollen. So I sympathise with the looks at least.

[Montaza]

The nurses have no right to carry on like that. Get your doctor to instruct them or write it in your hospital notes. Having finger ulcers I know exactly where you are coming from. There are doctors who work in Vascular who can insert a cannula in your arm using ultrasound machine to guide them to a deep vein. I had that done when having Illoprost infusion. Don't feel guilty standing up for your wellbeing.

[Redoralive]

It's as simple as saying "no IVs in my hands please, I don't heal correctly due to Scleroderma" and leave it at that. You have the right to refuse anything you don't want to have done, and you don't owe the nurses a full explanation of your disease-nor do they need one. I also suffer terribly with calcinosis and ulcers- especially this time of year so I get where you're coming from and it's a completely valid reaction.That said, I understand their frustration as I'm incredibly difficult to canulate and I'm on 6 weekly IVIG infusions at the minute so they're constantly struggling with me while having a million other things to do. Nurses tend to want to get a line in and move on because they're under a lot of pressure and will often have a ton of other patients. But as long as you politely explain you don't want your hands poked, ( if you have knowledge of a better place for a canula you should absolutely suggest that) you should be fine.

Best of luck with your ongoing treatments