Yes, I agree about the hydrating! I'm like Shayna. For 24-48 hours after the infusion I get flu-like symptoms. Every once in a while I don't, or they are minor. I discovered that if I drink a ton of water while I'm getting my infusion the side effects are a lot less. And when I say ton, I am talking about 2+ liters of water. I buy a tall 1.5 liter bottle of water and then another medium size bottle. I guzzle them all down. Always feel better after the infusion.

Shyana, congrats on the negative test! Yeah!!

I did manage to recover from the shingles -- what I thought was a second round was not so I could get my Tysabri on time. What a relief....

neuryoman, my neuro runs labs every 2 mths on sooo many things-all in the normal range
Linda

I'm happy to hear NO MO shingles and you got infused!!
Linda

Glad your 1st infusion went well I hope Tysabri helps with your symptoms even tho this is not one of the claims Ty makes-good luck!! It has helped with mine and my MRIs. I am 63, been on Ty a few months over 5 years
Best wishes
Linda

Hi Linda does it seem the ty has helped your fatigue at all? Seems for the last month I have had a lot of fatigue. it seems it is a dailey thing. At work I try in the afternoon not to walk as much. Some days when I come home I just feel as if I am dragging. I work nine hour days, I notice just before I started ty I was feeling run down. Kathy

Kathy, it has helped with fatigue for me. It sounds to me more that you are just plain tired from 9 hour days, that your energy is depleted ! I hope you can be good to you when you get home-even a bit at work... maybe some deep breathing, relaxing-anything you can do to restore yourself. All this is IMHO
Linda

Well that's good to hear. My liver enzyme levels are back in the normal range (after having spiked last summer taking rebif).

I recently visited my neurologist and we discussed tysabri. I then had bloodwork done to test for the jc virus and I'm negative. So, going to get MRIs done this weekend and then hopefully get my first infusion!

OK, so some news posted in the past few days that is of interest to those of us on Tysabri:

FDA permits marketing of first test for risk of rare brain infection in some people treated with Tysabri
http://www.fda.gov/NewsEvents/Newsro.../ucm288471.htm


Biogen and Elan win FDA Approval of label change for Tysabri
http://www.businessweek.com/news/201...r-tysabri.html


and a summary of Biogen's PML monthly update:
As of January 4, 2012, there have been 201 PML cases, of which 116 have been in the European Economic Area, 75 in the US and 10 in rest of world.
As of January 4, 2012, 42 of the 201 patients with PML have died.

As of January 4, 2012, in 47 natalizumab-treated MS patients who developed PML and in whom serum samples were available 6.5-187 months prior to the onset of PML, all 47 patients had anti-JCV antibodies detected.

As of January 4, 2012, samples were available from 74 patients at the time of PML diagnosis and all 74 tested positive for anti-JCV antibodies.
In addition, one sample, collected from a patient at the time of PML diagnosis following a cycle of plasma exchange tested negative for anti-JCV antibodies.

Because this sample was collected immediately following plasma exchange, and plasma exchange removes antibodies from the circulation, the information obtained from this sample is unreliable.

**One patient tested anti-JCV antibody positive two months before PML diagnosis. Previously, the patient had tested anti-JCV antibody negative 15 months prior to PML diagnosis, indicating that they had been exposed to the JC virus at some point between the two tests.

(** means even with a negative Stratify test, you should remain vigilant for any changes in affect, thinking, vision, weakness on one side or the other, etc. If you are unsure of the signs and symptoms of PML, please discuss them with your neurologist so you know what to look for. It is not known how people are exposed to the JC virus, and until they figure out how we are exposed, it remains a risk.)

Clarkstar,
Glad to hear it worked out for you!
Check with your infusion center, many of them have programs for people with no insurance. They may even just accept the $$ that the patient assistance program is helping you with. You don't know until you ask!

I have been on Ty for three-and-a-half years, and it has done wonders for me. I have not had the JC virus test.

So....that is just background....but...my question is, for the last month or so, I think I have been having some new spasticity issues with my left leg when I am walking some distance or when I have been sitting for a while, my calf has been stiff, tight and sore and after a while it has travelled up my leg to the back of my thigh and into my butt. I have also been more tired than usual.

I haven't reported this to my neuro, because I figured that I have had MS for 10 years, and this is probably just natural progression and it is not worth bothering him with something small like this.

Do you think I have gone the right way? Or should I have been in touch straight away. Do symptoms like this raise the flag of concern? Or does it just sound like trivial stuff that I should just accept as "my new normal"? I don't want to cry wolf.

Thanks for you ideas

Lyn