How are you supposed to know the difference???

[Gessika]

I just love questions from people in preparation for a dose of your medication. I’ve mentioned it a few times...I’m on Tysabri. Today was supposed to be my 5th infusion. After a few questions 1) have you experienced any recent changes in your cognitive function? Answer: yep 2) any recent changes in your walk or gait? Answer: yep, the nurse disappears for about 20 minutes then tells me that the doctor wants me to discontinue the medication . Problem with that? The issues are intermittent and are issues I’ve always experienced with the disease. How do I know what’s related to the medication and what’s just the good old disease saying hello.

I will admit that I’m relieved to not take the medication. I’m not a fan so far. I know it’s worked well for others so I am by no means knocking it. I’m one of those that does not respond well to most medications. Back to the adventure! Neuro appointment is scheduled for next Wednesday so we shall see what the verdict is on future therapy. As for now? HAPPY DANCE!!! Not a bad view from the hospital though!

[jimeka]

Lovely shot, thank you. Are you now a possible candidate for Ocrevus? 😊

[Gessika in reply to jimeka]

I’ll have to discuss it with the neuro on Wednesday.

[Timeflies5]

Beautiful photo!! Sorry you’re in the hospital now...I had my two half-doses of Ocrevus within the past four weeks and I’m kinda amazed at how I’m able to leave my cane in the car now...but I’m cautious and hope..and pray...it continues on this path...thanks for sharing your experience. 🌺🦋

[rjoneslaw]

great u dont have 2 take the meds

[ahrogers]

I totally relate to how to know if some symptoms are actually worse or just the same. My motor symptoms are mostly intermittent and don't act up at regular intervals. Can be bad for a few days then better for a couple weeks or be every few days for a couple weeks making it difficult to judge progression/relapse. I have sensory loss pretty much everywhere and trying to decide if I feel things less than a month or two or six ago is very difficult.

I am on Ocrevus and feel that I have had minimal increase in symptoms over the 3 years I have been on it so plan to continue with it for now.

Good luck, I hope they find a DMT that works for you. Ocrevus is my 3rd one so I guess third time was the charm for me.

[Gessika in reply to ahrogers]

Tysabri was my 5th. Ugh...

[ahrogers in reply to Gessika]

That's a bummer but we are lucky there are so many available now!

[MSsuzi]

Tysabri was my 3rd DMD.. and I was hospitalized while on it for the worst flare ever! It was exactly 2 years ago. I'm now on Ocrevus and I have been stable (according to MRIs that is) since June 2017. I love that I only need to go in twice a year for an infusion 😊

I hope you are doing better!!

[Gessika in reply to MSsuzi]

When I’m ready...this will be my next option.

[Iona60]

I had to stop and count, but ocrevus is my 4th DMT. It's been the most effective with the least amount of side effects for me. Hoping that you find one that works for you.

[mrsmike9]

1st was Tecfidera, 2nd was Copaxone, 3rd (and so far final) is Aubagio. So far, so good!