Is Ty an immune suppressant or modulator?

[pennstater]

I always thought Tysabri was an immune suppressant, and different than earlier DMTs like Avonex and Rebif which are immune modulators.

Today, I heard it increases risk for PML, but does not increase risk for non Central nervous system infections. So it does not leave anyone more vulnerable to respiratory, sinus, other infections.

Anyone know?
Thanks.

[Teekybird]

Hi,
I just put a post up with questions about this a couple of days ago. I am a teacher (and am somewhat prone to sinus infections already) and definitely exposed to lots of germs from the kids. So, I was also wondering if there is an additional risk for getting sinus type infections or colds when on TY.

[pennstater]

Hopefully someone with more knowledge will come along. I know from the patient info, there was a slight increase compared to placebo, like 1- 2%.

I did not have too much trouble first year or so, but last 18 months, have had issues with respiratory and sinus infections, as well as few viruses.

Not sure if potentially Ty relayed or just tough stretch. My prior doctor didn't correct me and thought inconvenience, but not reason to go off Ty. New neuro said can't be Ty related, but he also only wanted to test JCV yearly as opposed to 6 months (I am still negative).

I can definitely understand your concern with being a teacher. Every time I am near sick kids, I catch it!

[Kimba22]

People with a weakened immune system or people taking drugs that suppress their immune system (immunosuppressants) are most likely to get PML. Tysabri is an immunosuppressant medication. http://www.fda.gov/Drugs/DrugSafety/.../ucm199872.htm. This explains why you are asked to skip an infusion if you are sick or have been treated with steroids, another immunosuppressant.

That being said, during the past 2 1/2 years that I've been on Tysabri, I've only had 1 cold and one 24 hour stomach flu. Both of which my daughter came down with first, then lovingly shared with the rest of the family . On the other hand, Gilenya really messed with my wbc , and I had a uti quickly turn septic (the infection then went to my heart). I barely recovered from that, and even though I'd been taken off Gilenya, had another uti turn septic (with pneumonia to boot). This all began because the lab that was doing my bloodwork wasn't sending the results to my neuroIogist.

You should be getting complete blood work done every 3 months while on Tysabri (taken when you go for your infusions, and sometimes the ordering neuro will order it during an appointment as well - at least mine does, and then any drop in wbc counts will be detected.)

Kathy, I'm not sure why your neuro told you Tysabri doesn't increase the risk for non central nervous system infections? Like you already said, it my be small, but it may increase that risk. http://www.drugs.com/sfx/tysabri-side-effects.html

The Tysabri website recommends periodic JCV testing, but my MS Specialist has tested every 6 months. (He's been involved with the drug at least 20 years, since the first clinical trial). The last thing he wants is for one of his patients to get PML. You can convert to JCV positive at any time, so don't understand why your neuro now wants you tested once a year?

Teekybird, I understand your concerns (as a former teacher myself); but it's also important to weigh in this disease, and future relapses and progression. Tough choices, for sure.

Good luck to you both ,

[pennstater]

Thanks Kimba. I didn't understand why new neuro said what he did either. They were red flags to me, so have separate post related to my confidence in new neuro, at least related to MS.

As for old neuro, he did JCV every 3 mos in beginning, but since still negative, pushed it out to 6mos. He also did other blood work every 6, used to be every 3 as well. But they remained normal, so pushed that out too. The infusion center never checks, they go on neuro record. It is in a hospital setting. Old neuro did seem to think Ty could be leaving me a little more succeptible to repiratory, but my WBC counts were always OK. I think I missed 3 infusions outright and had 2 pushed out an extra 2 weeks becauseof iillness in past 14 months. But we both agreed that even if infections Ty related, it is not worth the risk of progression I was starting to experience.

Appreciate your insight. Seems to align more with my understanding from old neuro.