It is getting harder and harder for them to find a decent vein...

[DVCshop]

I have been receiving monthly infusions for nearly three years now and it is becoming harder and harder for the infusion nurse to locate a decent vein. Today it took four tries. Is anyone else noticing that the longer they receive infusions, the harder it is for them to find a vein? Today I was asked if I was ever told that I may need a port. I have been trying to find anything in the literature that states that the medication can do harm to your veins but so far I have not come across anything. The medication is Tysabri.

[NorasMom]

I want to say yes. After a 2-year period of frequent blood draws, contrast dye, Ocrevus, and steroids, my veins seemed to disappear. I'd never had any trouble, but then came the day they made 12 attempts in 2 arms and I walked out looking like a pincushion. After a year of no needles, I was fine.

My aunt (not MS) has a port, and she's had as much trouble with it as she did with the needles.

[RoyceNewton]

Thabnkyou something to consider for my next Neuro visit, thanks.

[AriSmyelin]

I know exactly what you are talking about. I knew before I finished reading because I was in that boat. My nurses would see I was on the schedule and would start calling ultrasound down to find a vein. Because they were taking anywhere from 4-7 times to find a vein. If they found one it would blow. Then they got trained to find veins with ultra sound machines meant for veins, when that didn't work anymore they started calling the PIIC team to come down because they would have to go half-1 inch down which required numbing. To answer your port question: I wanted one as well because of the vein difficulty but discovered it was not a good idea a port is very invasive and has catheters that go next to your heart. And if for any reason Tysabri was no longer suitable you would require another surgery to close your port because it would be useless. I am glad I didn't get it because from one blood test to the next I developed JCV and could no longer take the meds and transferred to Ocrevus. That is only 2 times a year and a port wouldn't be worth it. That was 2.5-3 years ago. They still struggle to find a vein. Here the interesting thing regarding veins. They seem to literally develop a brain of their own. Mine pop up then as soon as the need comes they duck and roll. As well as your veins are scarring up. Not dangerously, just on the outside so it's getting harder to actually "get" them. They can see them but scarring is making it harder to penetrate or harder to see. I am NOT telling you to not get a port. I am just saying what I learned and why it's hard. It's also very difficult to prove why you need one because it's invasive. I do not want to discourage you in any way. I am sorry if I have. I hope this clarified some answers for you.

[hairbrain4]

I hope you are all staying hydrated. Actually extra hydrated the week before your infusions. Most nurses will tell you how important it is. I have been getting blood draws every 3-6 months since I was 17, I'm now 68. I have also had 2 years of Ocrevus & several steroid infusions. After 7 sticks to get the IV in I made a vow to never go through that again. So the week before the infusion I was drinking at least 3 liters of water & liquids. I never had a problem after that. I realize having a blood draw is from a vein & infusions are in the artery which makes it even more important for hydration before an infusion, but it also helps for blood draws too.

[IFwczs in reply to hairbrain4]

I am really astounded to have made the connection between Ocrevus and the vein issue. I was on Ocrevus for a few years, and stopped when my condition deteriorated severely. Yes, then I started having trouble with veins, in addition to everything else. Which was new to me. They acted really strange. I was getting glutathione injections once a month. The nurse would have a hard time finding the veins, but when she did, the infusion would stop half way. The nurses said they had never seen anything like this before.

Nice to know the trusty Ocrevus was responsible for that also!

[AriSmyelin in reply to hairbrain4]

Very true. They also say that caffeine closes the veins. Hence why it works for some people with headaches but makes it worse for others. So you can learn the bases of your headaches. If caffeine makes it worse your vessels are already closing and caffeine closed them more. For me I learned that mine actually dilate too much so I drink caffeine to close them....But if it's an MS headache it probably doesn't matter either way.😜🙄

[Sandydemop]

the scarring is real however i like the idea of using the piic staff or the IV staff or someone who specializes in hard sticks. they can get it when no one else can. what they use for me is warm compresses on my arms, plus i have to drink extra water before. sometimes they use the vein finder equipment.

[AriSmyelin in reply to Sandydemop]

I loved the vein finder. What cracked me up is when I mentioned it the nurse goes. "What's that?" Then they go find one and are blown away. Cracks me up. I always warn them that I don't mind being poked and I am used to being poked around 7 times. Which motivates them to not do that. But I can't tell you how many times they had to get another nurse to help them even after the warm compresses. I will exercise my arms, warm compresses, but will NOT let them do my AC.

[Sandydemop in reply to AriSmyelin]

AC? i won't let them go after my wrists. ultra painful

[AriSmyelin in reply to Sandydemop]

The main vein in the elbow. I always allow for fishing and never had them pull out except for one time. The nurse found a vein (after many attempts) on the fatty part of my thumb and she hit a nerve. I let it go for a second until she kept digging and she finally gave up because 1: I was about to call it (or did) and I am sure she saw my face. I ended up wearing a hand warmer over my thumb for sometime (great on the go heating pad for a small spot) because of the nerve damage. I couldn't use my thumb for sometime. Because of all the years of poking I can tell them which veins are prone to what.

[Cwright170994]

I'm on ocrevus now, they found I was JCV positive after my 1st tysabri back in Sept 2020. I know its not the same medication, but I've had this kind of issue with my last infusion back in Nov last year. I'd accidentally had my pre-bloods taken from my non-dominant arm a couple of days prior, so the nurse couldn't actually get the infusion needle put in there. She had to use my dominant arm. Towards the end of the infusion though, she saw the veins on my hand and how good they are for putting a needle into them! So, my next infusion at the end of this month I'll need to make sure I'm well hydrated before I get seen by the nurse just so she can get a vein in my hand 😁🙏

[twooldcrows]

haven't heard that it does but i am not on it ...if they are asking it would be so much easier and less painful after getting it ...keep checking to see if it is causing any damage ....love ,take care ...

[ahrogers]

I am an oncology nurse so am familiar with this problem, just not in relation to Tysabri. I had a patient who was difficult to get the IV in. He started using a resistance band to exercise his arm on the way in. It definitely helped pump up the veins and made it easier to get the IV in. It can be difficult for them to find my veins too. They always put a heating pad on for about 5 minutes and have a vein finder that shines a special light on your arm to see the veins. Since doing that it never takes more than 2 sticks. It has taken 5 tries before. Since I am on Ocrevus I only need to deal with this every 6 months.

I want to start doing dumbbells regularly to see if that will help with my veins. I know when I was younger and exercised regularly my veins were better.

A port is another option though if other methods don't improve the ability to access your arm veins. It can always be removed if something changes and you don't need it anymore.

[mrsmike9]

So sorry. This is why I've avoided infusion meds. I have crappy veins to start!

[Fancy59 CommunityAmbassador]

DVCshop, I understand your troubles about finding veins to use for medication. There is a new tool out there that some hospitals and facilities have that actually find veins for the nurses so they don't have to stick you multiple times find a vein. Don't you love when nurses on call wind up sticking you twice because they can't find the vein and then they bring in the nurse who is the vein expert. She promptly then goes ahead and sticks you twice more and you're thinking OMG somebody get it right. Nurses have taken to finding veins in my forearm which doesn't hurt too bad but when they are forced to go down to my wrist or the back of my hand that hurts like crazy. And they're doing that more and more often because I have veins that when they feel alcohol rubbed across them they dive for cover and disappear. 🫣😵😮‍💨

[Phil413]

Hi, My personal experience with Tysabri is 6 years on monthly Infussions of Tysabri with no infussion difficulties. They never had trouble finding a vein. I remember two times when they needed to stick me twice to find a vein. I had a “favorite” arm and vein that they used most of the time. I loved using this DMT.

[sashaming1]

Over the years my veins have formed scars which makes it more difficult to insert the needle. But, they choose the other arm if they wanted to. I got most of my infusions in the top of my hand near my wrist. So they could find my veins easier I would drink plenty of water the day before and they would use a warm towel on my arm before a stick with the needle.

[DVCshop]

Thanks everyone for your responses. The nurse used all of the tricks that you all mentioned - alternate locations, warm compress, vein finder. I hydrate prior. The only thing I haven't tried is using resistance bands, so that is what I will try next month! I am doing well on this DMT so I don't want to switch again. I know that this too shall pass. Take care everyone and thanks again for the great advice.

[Tazmanian]

Good luck my veins have gotten hard to find too

[Hidden in reply to Tazmanian]

Oh yeah and my last one was 5 misses which is still the record tied a couple of times hope never to break it

[Hidden]

Yes when I started out checking out this MS stuff ( which btw I don't recommend) the nurses always said how nice my veins were... Now the ones that no me run and hide when they see me coming