Pain

[Vixen]

After using Tysabri for 2 and 1/2 yrs I tested positive for the virus that causes PML. I was taken off the
Tysabri and started Gilenya. It has been 3 months now. I have not had any complaints, complications or side effects from the Gilenya. I was actually thrilled not to be a pin cushion anymore. I work full time and maybe miss a day of work once in every two years, seriously. Today is one of those days. This morning I woke up in excruciating pain in my arms, hands, shoulders, back and had extreme weakness in my legs to the point where it was difficult to walk. I have a call in to my doc but no call back yet.
Questions: Do you think this is a delayed side effect from the Gilenya? Could it be the Gilenya isn't working and the MS is progressing? Has anyone taking Gilenya ever experienced what I've described?

[Jalee]

After using Tysabri for 2 and 1/2 yrs I tested positive for the virus that causes PML. I was taken off the
Tysabri and started Gilenya. It has been 3 months now. I have not had any complaints, complications or side effects from the Gilenya. I was actually thrilled not to be a pin cushion anymore. I work full time and maybe miss a day of work once in every two years, seriously. Today is one of those days. This morning I woke up in excruciating pain in my arms, hands, shoulders, back and had extreme weakness in my legs to the point where it was difficult to walk. I have a call in to my doc but no call back yet.
Questions: Do you think this is a delayed side effect from the Gilenya? Could it be the Gilenya isn't working and the MS is progressing? Has anyone taking Gilenya ever experienced what I've described?

I had severe head pain and had to quit Gilenya.

How are you feeling? It has been several days since you posted your question. Did your doctor ever respond?

[GandalfRA]

I think it's a Gylenia side effect, I feel the same and I work full time. But from what I read, it takes time getting used to it.

Good luck.

[empirerecs]

I've been on it since July 5 with no side effects at all. I know a common one and one that causes people to have to stop are severe headaches.

I really have not read or been told by either of my docs that it would take time to get used to G - maybe a week or so. I would call the Gilenya nurse in addition to your neuro.

Definitely possible you are having a reaction - everyone's system is so different.

I hope you feel better and get an answer. It's a great medicine and definitely better than being a pin cushion.