Systemic sclerosis and vein - Scleroderma & Ray...

Scleroderma & Raynaud's UK (SRUK)

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Systemic sclerosis and vein

Lo1234 profile image
14 Replies

Good day, everyone. I'm curious whether anyone with scleroderma or systemic sclerosis has trouble opening veins for IV drugs?, And if anyone has established a cvp line for IV medications?

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Lo1234
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14 Replies
Steph profile image
Steph

Hi Yes they always struggle to get line in with me. Always thought it was the Raynauds but could be the scleroderma.They advised me to drink plenty before hand as it helps them find a vein when you are hydrated. I had a pic line put in instead the last time I had an infusion which worked really well

Agedbiker profile image
Agedbiker

Yes me too. Veins are tough as old boots from the scleroderma. Each infusion would normally be up to 6 attempt before finding a suitable vein. The QE at Birmingham they used a special red lamp to look for suitable veins each time. Drinking plenty beforehand does help too.

Lo1234 profile image
Lo1234 in reply toAgedbiker

Did you ever try for cvp line?

Agedbiker profile image
Agedbiker in reply toLo1234

No. It was considered but my cyclophosphamide was only 8 months so it wasn't worth it. If I have another course then I would definitely consider it

Klbmum profile image
Klbmum

My nurses struggled to find veins for my cyclophosphamide in my hands, Raynaud's we assume, so I'd sit with both hands in a bucket of hot water for 10 mins and that usually made the job far easier. They'd have 3 staff ready to try as soon as the hands came out of the water.

Jacko37 profile image
Jacko37

I've got the worse veins ever, it has taken hours sometimes with nurses trying on both sides! Really important to keep your hands warm before the attempt.

Lo1234 profile image
Lo1234 in reply toJacko37

Did you ever try cvp line?

Jacko37 profile image
Jacko37 in reply toLo1234

No, but it gets more difficult ever time I need IV meds, my veins see the needle coming and then do a runner!

UCTD profile image
UCTD

Yes I have the same problem. I have had 5 PICC lines inserted in the last 2 years, for Iloprost infusions and once or twice for Rituximab. Sometimes using heat packs and drinking plenty of water before they attempt an IV works and they have success getting a peripheral line in. Same trouble getting blood taken. Not sure if it is Raynaud's or the scleroderma which is the cause, A central line is not usually a first choice for line insertion, have they discussed what your options are ?

Lo1234 profile image
Lo1234 in reply toUCTD

Yeah but I'm not sure if I should open cvp line or not

Jensue profile image
Jensue

I also have issues with a doctor even trying to find veins in my feet for an infusion which didn’t work, so was told to drink plenty of water & stay warm. But another consultant who saw me in hospital suggested I try sildenifil (viagra) for my Bad Raynauds which I did & has made quite a difference to me , it hasn’t gone but made things a bit easier

bridget-martin profile image
bridget-martin

I am the same I always warn them I sm tricky. I have to go to the hospital as my GP surgery can never get any. At the hospital they use a tiny paediatric butterfly needle. I always drink and eat plenty before and keep my arms covered to be warm, even in the sumner! I asked about a port but the nurse was not keen due to infection risk.I am embarrassed by it and they keep apologising to me but we are so happy when they succeed .

AnnW22 profile image
AnnW22

Be well hydrated, have a heat pack on the arm(s) , use a squeesy ball in the hand(s)My hubbie has every 2 weeks ECP for GvHD initially really difficult to get a vein but now ok!

this is fora different condition but the same!!

Purplepeace profile image
Purplepeace

I have this also.

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