Xylaria

Hi fellow Campather! How many treatments have you had? I have been in the study approx 6 years and am considering a 4th treatment. It has definitely been a game changer for me too! It's my understanding there have not been many to receive 4 doses, like maybe 5 people?

Wow! Ok. Please do ask your doc when you get a chance-I am on the west coast, got infused on the east coast, still talk to east coast, and like to get all the info I can. Sometimes the coasts conflict with the info.

Not counting each I infusion as a dose, I mean total treatment? I've signed on many extensions, this is like my month 64 after the end of original study (48 months). So I had 2 infusions per initial study protocol, then a 3rd in extension, and considering my 4th.

How do you react to the infusions? Do they keep you out of commission for very long?

The infusion causes a terrible awful rash that continuos shots of benadryl will control. Lemtrada made me feel flu-ish for approx 3 months, but only really bad the 1st month, and better as time went on. In fact, the first infusion rash was so bad, all the docs around were brought in to gawk and the pics I took went on to be on their poster boards for "infusion reactions". The benadryl and prednisone IVs almost caused psychosis! Very whacky feelings.

As the treatment becomes available and more anecdotes come in, I will make a decision.

Have you had any cancer scares? Do you feel you have been checked enough for things like melanoma and cervical cancer? That is a risk that worries me.

Similar question, any advice for 4th grader with increasing tics- how to deal with social issues? I notice he tics much worse during video games. Could they be a trigger?