Port for Tysabri...getting ready for #13

[EduKate105]

I was diagnosed on November 30, 2009. I did Rebif and HATED it... after giving birth to my daughter in June 2011, I started Tysabri and my only complaint is that I can't get it every 3 weeks instead of 4... I'm thinking about getting a port, as my veins are lousy and I'm looking at doing at least the second year of Tysabri. I am really happy with it and would love to continue beyond the 24 mark, but not sure if I'll be able to... so I guess I'm just really torn about whether I get a port for potentially just 11 infusions.

I met with a surgeon on Monday and have been having nothing but second thoughts since then. I think it's because it would be a "voluntary" surgery and I'm afraid I may regret it; however, if I have the potential to be on Tysabri for years to come, the benefits would definitely outweigh my fears...

I'm so overwhelmed right now, I feel like there are periods of time where I can almost forget I even have the MS, but the past few weeks that has not been the case. I've just started on Provigil for fatigue because the first med we tried didn't work... and now I can't sleep...

I needed to reach out... thanks for any thoughts...

[22cyclist]

I had a PowerPort put in before my first Ty due to my veins being so bad. They did mine under local anesthesia in an outpatient radiology center.

The only problem I had was that they couldn't get an IV in to give me anesthesia (local) prior to starting the procedure so I had to just tolerate them placing the IJ line until they could give me the Fentanyl and Versed. After that I don't remember it (Thank you Versed).

Anyway, I LOVE MY PORT!!!!

No more blood draws, no more IVs for anything! Life is SO much better.

It doesn't hurt to stick it! You will be SO much happier!

Can't advocate a surgery for you, but can advocate the results.

You will love it. The whole procedure takes about 15 minutes. The prep time (them getting you ready takes about 30.

It is a little sore afterward and bruised, but in about a week you don't even notice it is in there.

[lindaincolorado]

Hi Kate, I have had 73 infusions-the last 18 have been the easiest sticks and getting into the veins... absolutely GREAT nurses. I do tell them my veins are deep and rolling and they listen!! For me having 1/2 cup of coffee plumps up my veins, and yes, I was always told no coffee just lots of water. I keep my arms warm. Many different hospitals and one in house dr's office had issues getting my veins but, eventually did-sometimes up to 3 sticks. I didn't/don't want a port and have done fine.

Good luck and best wishes however you go

[EduKate105]

Thanks for replies :-)

I'm still on the fence. My surgery is scheduled, but I want to talk with my neurologist first about how long he recommends me staying on it... I'm also waiting on my most recent JCV test.

I will definitely be sharing with him what I've learned on this site about the number of people who have been on Tysabri beyond the 24 months and even JCV + and still on it. It gives me hope that I may get to stay on the drug I know is working rather than arbitrarily switching to the unknown results of another treatment.

I did #13 today and didn't even use my "emola" (sp.?) cream to help numb the area first... and it actually went pretty smoothly... we used the heat compress and that seemed to help!

I'm so happy I found this site :-)