off rebif now on to tysabri

[torikat32]

went to neuro this morning she doesnt like the welts i have from the rebif so we are going to stop that plus the other side effects are bothering me as well. so we discussed copaxone and I am not thrilled at daily injections so we then discussed tysabri and feel that may be a good fit. I know a few people here that are on it so any feed back will be great I am nervous about it because of the PML but because I havent been treated with steroids in the past that I dont think I have to much to worry about,

I am nervous about the IV I am a very hard stick to begin with usually multiple misses before they get a vein even for a blood draw has anyone had a port a cath put in for their infusions? if so how was the procedure and how are the infusion?

Thanks
Kat

[Lulu54]

Ren had a port put in, but for some reason I am thinking they may have taken it out.    Hope she sees this and chimes in.

There is no connection between steroids and PML, as Kyle has already said.  The JC virus is the one concern for this.


My infusion nurses normally get it the first time, and I am a very hard stick, too. My veins roll and blow - my 8th infusion is next Tuesday.

Good luck with the decision making  - I think for me the choice was a good one, even though I had a relapse affecting my walking this summer.  

[SarahL2491]

The nurses who do this are usually prett good, I haven't heard of anyone needing a cath  but Perhsps someone else has some input
I take tysabri snd am JC+
Am taking #8 tomorrow

[torikat32]

thanks Kyle for your info how is the infusion? my neuro is sending me the papers for the lab to do the jc virus . I never been on any other kind of meds and not immune compromised  so I will feel alot better when the test results come back.

[kwarendorf]

Hi Kat -

I will get my 11th infusion in about 10 days. I have had no issues of any kind in conjunction with Tysabri. From the follow up MRI's I've had Tysabri seems to be doing the trick. No new lesions or relapses since I started.

You will be tested for the JC virus prior to starting. If you're negative the chance of you getting PML are about as close to zero as you can get, without it actually being zero :-)

Prior steroid treatment alone does not increase you risk for developing PML. Prior  immunosuppressant drug therapies, like those for treating HIV/AIDS, do. But even if you have had prior immunosuppressant therapies you still need to be JC Virus positive. Rebif is an immunomodulator not an  immunosuppressant.

Kyle