Recurring infections

[pennstater]

Has anyone had trouble with recurring infections while on Ty? I just had jcv test, have been negative to date. In the last 4 months, I have had bronchitis twice. I have a doctors appt. tomorrow am as I am not sure if sinus infection, flu, or bronchitis again.

I see my neuro the end of January, and depending on appointment tomorrow, may need to postpone or miss infusion again.

I used to get both bronchitis and sinus infections a lot (3-4) year but these all but disappeared as MS became more active. At least until now.

Has anyone had this problem and either changed dosing schedule for Ty or stopped it altogether?

Thanks for any input. I am so frustrated and am questioning whether it is worth it.

[pennstater]

Once again, bronchitis. I am guessing my infusion next week won't happen. I have to wonder if Tysabri is worth it for me. It seems to be take my chances with the MS and feel lousy or stay on Try but feel like crap from infections. It will be interesting talk with my neuro.

[dyin_myelin]

I had upper respiratory last month and I don't know what now, either flu or throat bug. I was just debating whether or not to push it out another week. These guys at the infusion center would let me have it unless I was spewing active TB I'm sure of it lol.

It's no fun but that two weeks of energy post injection are solid gold. What about long termers, are you a walking petri dish for viruses or does your immune system adapt?

[DebbieB]

I have been in a research study for Tysabri, and although it's double-blind, I do believe I'm getting the drug. I have had one infection after another for the 11 months I've been in the study - - however - - - this month (knock on wood) I've been infection-free. Maybe I'm turning the corner.

I've had upper respiratory infections (a number of them), UTIs, throat infection, an infection in my gums (never have had any tooth/mouth problems ever before) and even, most recently, gout. It's been a roller coaster.

The study is for the use of Tysabri in SPMS. I'm envious of the other MSers receiving Ty infustions when I do. They talk about the abundance of energy they have after the infusions. I, sadly, have not experienced that (not even close). I have, however, been more "stable" with all of my symptoms during the trial, so that's something.

I'm green with envy of those of you who have super-human energy after the infusions!

[pennstater]

Thanks dyin_myelin. I am sorry to hear you are also under the weather. All I have to say is I was coughing and the infusion center would hold off until discussed with my neuro. They are extremely cautious.

I am also curious as to experiences of people on it long term.

DebbieB - I do hear you on the energy. Until this infection cycle, I was like that. Not quite the energizer bunny, but is felt normal for a few weeks related to fatigue. But it is a good reminder for me that maybe if I can break the cycle, enough benefit was had. I do hope you broke thecycle this month. maybe you will get more benefit then. Let us know how the study goes and how you make out. Do you have a separate thread on it? Would love to follow it.

[Joy]

Has anyone had trouble with recurring infections while on Ty? I just had jcv test, have been negative to date. In the last 4 months, I have had bronchitis twice. I have a doctors appt. tomorrow am as I am not sure if sinus infection, flu, or bronchitis again.

I see my neuro the end of January, and depending on appointment tomorrow, may need to postpone or miss infusion again.

I used to get both bronchitis and sinus infections a lot (3-4) year but these all but disappeared as MS became more active. At least until now.

Has anyone had this problem and either changed dosing schedule for Ty or stopped it altogether?

Thanks for any input. I am so frustrated and am questioning whether it is worth it.

Hi pennstater,

I've had 71 infusions of Tysabri and I used to have one respiratory infection after another until I had a serious case of pneumonia in 2012. My doctor recommended a pneumonia shot and I've had no respiratory infections since. I don't know if that will help you or not but it certainly helped me.

Good luck to you. I hope you feel better quickly.

[DebbieB]

Thanks, Pennstater for expressing interesting in hearing about the study I've been participating in...,

I just found out that not only am I am JCV+, but my titer was 3.8 (ugh). Being tested again to see if the titer score is consistent. I fear that if it is, I'll be given "the talk" before the next infusion....and, sadly, will probably be out of the study.

IF I'm able to hang through the next month, I'll start a thread on the study and my trials (no pun intended) and tribulations.

AGain, THANKS for your interest!

[pennstater]

Joy - Thanks for sharing your history with me. I can 't imagine having respiratory infections that long. The MS may not push my husband away, but the bark from the cough might The plus side, he now knows what I feel like with loud noises, like the sound gets in and then rattles around in the brain. Apparently, my cough some times does that to him. I see neuro again in a few weeks and will discuss. I will bring up pneumonia shot to see what he says. Appreciate the post.

Debbie - Sorry to hear about your JC titer level. I am disappointed for you. I do hope you keep us in the loop. I have to thank you for being in the study - It helps all of us who follow. I did just find out still negative.

[LL60]

I have been on Tysabri for 4 1/2 years and really haven't noticed too many infections. Have had two in this time frame that gave me fevers and lasted weeks and weeks. One time I had to go to the ER only because it was on a weekend and I feel into the guidelines my doctor laid down for me to come in if I have a fever over 101 for more than 4 hours. They dubbed it "just a cold." I caught a cough the end of Aug. that lasted almost 2 months. Never ran a fever. Just coughed.

I work with sick kids so get my shots every year and talked my doctor into the pneumonia shot even though I am not at the age that my insurance pays for it. I wash my hands like crazy continually throughout the day.

I am jcv + and my titer number is 4.1. I just was retested 2 weeks ago but do not have the new number yet. I have known I am jcv+ since Sept. 2012.

I can't imagine giving up what has been almost like a cure for me.

[Remy9111]

Yes, I've had infections. I've been on the drug for 5 1/2 years. Around #14 I started getting terrible UTI's each month. After 4 in a row that needed hard core antibiotics I switched to getting Tysabri every 8 weeks.

Two great things. The UTIs stopped and there was no break through disease. The 8 week cycle seems to work just as well. (Knock on wood)

I've never had any respiratory infections except once in the first year. I'm pretty neurotic about using Purell. I use it religiously which I am certain keeps me from getting sick.

[pennstater]

Thanks LL60 and Remy. So glad to hear your mostly positive experiences. I had my infusion today since bronchitis getting better and last day of antibiotic. I guess we'll see how the next few go.

[dyin_myelin]

No regrets about pushing out an extra week. Throat infection cleared up, still coughing up the nasty but it could be residual. Little UTI in the works but I've had that more than not for the past two years. However, I was friendly with one person that got it the same time and now I'm off a week for good.

New nurse, early 20 something. It popped out and she said, "the vein must have moved." She grabbed the stool to sit on while wearing the gloves she used to inject. I hope I don't get the MERSA. Could it be anything other than the placebo that a few hours later I felt great? I went and got my eyebrows done and then went shopping.