Riverwild

I saw you wrote each person gets their own suite I am happy that neither of the 2 sites I have gone to do it that way. In NJ 2 big rooms chairs all around
with space in between. In Fl one small room 8 chairs one right next to each other and up against the wall so you cant put the back down torelax .But people talk to each other which for me maakes the time go faster.

Take caare
laurie f

Question for you Tysabri veterans:

I'm supposed to get infusion #8 on Monday. Yesterday I developed a garden variety cold (low grade fever, mild cough, sore throat, congestion). Can I still get the infusion? I know it's best not to have one with heavy duty infections but what about a simple cold?

If you can believe it, I haven't had a cold in 10 years. I think my immune system has been in overdrive.

My neuro wouldn't let me! I thought I was fine, but he is very cautious, made me wait a week.

I believe that you haven't had a cold in that time! I am one of those people, who just don't get sick, and when I do it's either over in a few hours or it knocks me on my butt!

Whether you get the infusion or not is up to your doctor. When you tell the staff, they will call the doc. Some docs say no problem, and some say let the illness pass, depends on the doc.

I have an abscessed widom tooth. It started Friday night and Saturday I called my dentist and he prescribed amoxicillin 875 mg. BID.
I called the neuro and asked if I would have any problems, since I just had my infusion. His reply was "Do you want to get rid of the infection? TAKE it!"

And yes, not only did they both call me back on a Saturday, but the dentist called in the scrip and told me to stop by on Monday morning when I get out of work and he will check me out and schedule the extraction!

It already feels better, the derned throbbing has stopped and the pressure has lessened. This after only three of those horse sized pills! I think my body is hyperdriving the infection off!

You may not even have symptoms of that cold by the time you get to infusion Monday!

Our place used to be like that, with the chairs all in one room and oncology and dialysis patients going to the same place, but they did a redo after HIPAA was passed and changed it to private suites and separated the oncology from dialysis. That doesn't mean they keep you in the chair while you are infusing. I get up and walk around and say hi to people and talk to the nurses and get coffee and magazines and make a nuisance of myself!

It's get up and wander or sleep for me!

RW, I hope the tooth is feeling better after the horse size antibiotics!
I talked to the nurse at my infusion clinic by phone. I cannot have the infusion. In fact, he said I need to wait at least 2 weeks to insure the virus is out of my body and I have recovered. His argument was that Tysabri can cause respiratory infections due to immune system suppression and sometimes it takes longer to recover from them so I need to be totally healthy before the infusion. 2 weeks seems like a lot! But I guess better safe than sorry?

I got the same word from the dentist this morning, that he has done some reading about Tysabri and he won't pull the tooth until the infection is gone. I am on an 8 day course of the horse pills and then I go in and get rechecked and get it extracted if the infection is gone.

It's funny, when I went in Thurs. to get my infusion, the nurse commented on the fact that I had a higher temp than normal-99, as opposed to my usual 97 or so.
She asked if I had anything going on and I said no, but then Friday...WHAM! with the tooth. I didn't feel any different or have any signs of trouble even with the elevated temp, so we went ahead with the infusion.

It still hurts. I've had 5 of those pills now and the throbbing and pressure pain is gone, but it still hurts. My ear hurts, my throat hurts, my jaw hurts, my gum hurts and I want this sucker OUT!

Why do we have wisdom teeth anyway? The top ones never erupted and I already got rid of the other one years ago cause it was crowding out my front bottom teeth! Now I hear that because this one was in for so long, the molar in front of it may loosen when the wisdom tooth is gone. It's a slow downward spiral and for someone who has always brushed and flossed and didn't have a cavity until I was 15, this is just a giant pain in the rump!

ARRRGH!

Sorry about the tooth River! It sounds miserable.

I may have had to have the toenail removed - and it hurt - but I don't have any wisdom teeth! I was lucky to have been born with zero. All four of my siblings had all four that had to be removed because they were impacted.

Now, I had four boys and when they were born, I said, "You are blessed with no wisdom teeth!" The oldest had one, the second, two, the third had zero, and the last had two. So out of a possible 16, we only ended up with five - and I'd say that is pretty good.

The funny side of this story is that my husband had to have a colonoscopy at a much younger age than most men because a sibling had some polyps. He ended up having some also, so he is on the three year colonoscopy schedule, and his sons will have to start having them at the age of 35!

So I remind my sons that there mother gave them "no wisdom teeth" and their father gave them colonoscopies!!!

(We won't talk about MS.)

Polyps, impacted wisdom teeth, bad toenails....gahhh, it seems like more and more stuff falls apart as you keep getting older.

RW, I'm sorry for the tooth pain. That is just no fun.

I had an appointment with my neurologist today. It was supposed to be my #6 infusion check up but I did that with the nurse in Dec. since the doc was overscheduled around the holidays. I was also supposed to have the #8 infusion today but given the viral cold they said no. The neuro agreed with the infusion nurse that there was no harm in waiting 2 more weeks until the cold was completely gone. I still have some cough and congestion. She seemed to think waiting 1 week would be fine too.

I think I told you this before but my neuro has MS and is on Tysabri. I'm not sure yet if I like that my neuro has MS too. But that is a whole other story!

I asked her about the protocol at the Multiple Sclerosis Research Center in New York (which was a spinal tap, blood serum test, and MRI every 6 months to watch for PML). She thought it might be on the aggressive side, having to get a spinal tap every 6 months. She had discussed with other neuros that 1) the spinal tap headache seemed to be worse if you were already on Tysabri 2) the hole to reach the spinal fluid was more likely not to close up as quickly, thereby letting more fluid keep leaking, because of the immunosuppression from Tysabri. Anyhow, my clinic already tests my blood every 3 months for the JC virus. She told me if I wanted to have a spinal tap at the 12 or 15 month mark I could to check for JCV for peace of mind about PML. I guess I can think on that one.

Also, one of the researchers at my MS clinic just published a piece in the Archives of Neurology suggesting the possibility of taking a "holiday" from Tysabri. He discovered there were fewer immune cells called CD4 T cells in the brain of people on Tysabri and perhaps this increased the risk for PML. By taking a holiday one could allow those immune cells to build up again. My neuro said there was debate amongst the doctors in the clinic about this suggestion. Her concern was that if you take a Tysabri holiday for any reason your risk for developing antibodies goes up if you try to go back on the drug. And then the drug becomes useless.

I'm still pretty new to this and sometimes I find these visits to be quite frustrating because there are never any "right" or "definitive" answers to the long detailed questions I ask. Sometimes I wish the neuro could say "Okay, do this, do that, make this decision, and then everything will turn out this way...." I guess it doesn't work like that, right?

Hang in there everyone!

I hope that things go your way.

-Vic