I had infusion #30 almost 2 weeks ago. It went well. But, approx 5 days later I developed a fungal infection. I'm using a nystatin cream for it. The darn infection is very persistent :( My neuro isn't concerned but, I'm wondering if anyone else has had a fungal infection after an infusion. I don't know if they are related or not. Even if they are related I won't stop taking my Ty unless they give me a blood test to check for my possibility of developing PML and I test positive. If that happens I'm going to cry...LOL

My main problem actually is that my husband freaks out every time he hears about another PML case :( It has not been confirmed but there have been reports of another PML case yesterday. That would bring the total number of PML cases to 40.

Take care everyone....and have a great day. Spring is going to be here soon...I hope ;)

No official update from Elan/Biogen. Probably in a few days. I will report the official confirmed number as soon as it comes out.

Shayna, thanks for checking in! Spring better be here soon, I can't take much more, it's snowing here right now...:rolleyes:

I skipped one infusion because I had a ruptured appendix. They had three different antibiotics running into me after surgery, the infusion was scheduled for the day I was to be released and I decided to skip it because i was concerned about having so many meds running into my veins.

I came down with a raging yeast infection from front to back down below and a nasty case of thrush. I did diflucan and a nystatin swish and everything cleared up, but it was hell. I was on zofran for vomiting, and oral antibiotics and until I was done with the oral antis, the other stuff stayed.

I don't know what tossing Tysabri into the mix would have done, but I knew I wasn't ready for an infusion. My neuro left the choice up to me, but said it was ok to do the infusion.

I no longer tell the old man about where we are with the PML cases unless he asks.

I've got the same number-40- for PML cases.

RW, I don't tell David anything. He googles PML and Ty regularly :(

More Tysabri news
 

The article is longer than needs to be posted here. Please click on the link to read the full article. :)


http://www.prnewswire.com/news-relea...-85813232.html


WALTHAM, Mass., March 1 /PRNewswire/ -- Decision Resources, one of the world's leading research and advisory firms for pharmaceutical and healthcare issues, finds that, for the treatment of secondary progressive multiple sclerosis, Biogen Idec/Elan's Tysabri will remain Decision Resources' proprietary clinical gold standard through 2018...

Glad to hear it's going well for you, both the Copaxone AND the new job!

I wonder how companies justify increasing the price of drugs that people need to survive or live a normal life, when the economy is in the freakin' toilet. Shame on them all, they deserve to be beaten with the outrage and despair of every person who has to give up treatment because they cannot afford it. :mad::mad::mad:

What amazes me is they keep issuing patents on these specific drugs making it impossible and illegal for any other company to manufacture a generic version, therefor creating a monopoly in which companies like Biogen Idec can go to the consumers and say pay us $5000 a month or this disease will take you over and you will be physically impared for life! And there is nothing anyone can do about it because they are the only ones who have access to the drugs.

Which of course in turn forced people to become dependant on medicaid and medicare to help cover these expenses. Even when I was working full time, I didn't make $5000 a month. And I sure didn't have an extra 2000-3000 lying around to spend on any of the other DMDs.

Just a update - #23 down 8 days ago and still in a relapse. My neuro is getting stricter. Blood tests more often now and they are having us see the neuro every 6mos and the nurse every 3mos. Last year was nothing like this. I assume it is due to the PML data - not worried about that here. Hope everyone is doing well - wishing you all the best! Bring On Spring!!!!!!!!!!!!!!!!!

Sorry to hear you are still in a relapse, Pink. Did they go through the whole list of MRI, bloodwork, etc?

It's my understanding that if a person appears to be in a relapse, they automatically check for PML, and hope it's a relapse, because relapses are rare if Tysabri is working. I haven't had one since starting.

I have done the quarterly neuro appointment since I started in 2007, the bloodwork every 6 months, and the infusion nurses are on top of it all every month, asking more questions than normal if they suspect anything.
I do go to a VERY small infusion center/oncology center in a 25 bed hospital and they have more time/knowledge of the patient and I think they notice when a patient is "off their game" or outside of their norm.

I started out thinking the whole procedure from beginnning to end with infusion/waiting/observation, etc. was a pain, but now I just do it since I know the team isn't going to let me go any sooner.

Riverwild - sorry to be late. I tend to come and go here fast and missed your post.

It took me two months to convience them I was in a relapse, but yes I have had it all. MRI, blood tests and 5 days of home IV steroids. MRI confirmed an active leasion, but thank goodness no new ones.

This center is of average size - they only did blood work 1X last year - now every 3mos. I also had to sign a pregnancy wavier or be urine tested every time. I've not seen a neuro since I started here (only the nurse). Now they are doing the nurse every 3mos an the neuro every 6. Yes, same here - the nurses ask tons of questions every time. My total time is at 2.5 hours due to all questions. I hate it!

I went to see another neuro, but was not impressed. However, he said that steroids do not cut down on the amount of disability from an attack. He stated they only cut down on the length of the attack. Has anyone heard this? The longer this goes on, the more sx I get, so this would not seem to be true, but unsure. Thanks :hug: