@CarlyxG 

Last reply

CarlyxG

Tysabri side affects

Hi everyone, I’m new here! I was diagnosed 2 years ago with RRMS after losing the sight in my right eye and have been on Tysabri ever since. Lately I’m getting frustrated with living with Tysabri - around 3-4 days before I’m due my next appointment I’m just drained and have flares of old symptoms. Then the day of and following 2-3 days after my appointment I feel vile, I can barely function. I know of one person in my group that’s gone from every 4 weeks to 8 weeks but wanted to know if anyone else has done this and did they notice any difference for better or worse? TIA x
@Stumbler

@carlyxg , would an extended period between infusions help your situation or make it worse? I ask because if you feel drained about 25 days after the infusion, how would you feel on day 50 after the infusion? If you Google "tysabri extended dosing", you'll find a lot of research work going on. Although this is looking primarily at reducing the risk of Progressive Multifocal Leukoencephalopathy (PML), whilst monitoring the efficacy. It's worthwhile asking the question at your infusion centre or ask your MS Nurse.

@kea21

Hi, I have now been on Tysabri for nearly two years, 15/16 infusions at six weekly, I did notice that I had issues near the end of the four to five week periods? But for the last 7/8 months I have been suffering from very low blood pressure(85 over 49/62)??? This causes dizziness,headaches and my walking is terrible. They have tested nearly everything and so far only a slightly low immunoglobulin results? I am still waiting on another MRI and a Heart scan. I have the Drug Company also watching and they say it is/can be a druggie issue? I lack strength to, whatever it does become very frustrating and depressing! I sometimes wonder if it is worth bothering with Damn drugs at all!