In between Gilenya & Ocrevus Question

[AM1958]

Hi..I was diagnosed 30 yrs ago and I’m lucky I’ve done well til a couple of yrs ago. Now it seems a steady, slow decline. Been on interferons for years, then Gilenya since last June. Having my first dose of Ocrevus on April 5....had to stop Gilenya for 4 weeks before getting first dose. Within 4 days of stopping, my symptoms were noticeably much worse. Had 3 days steroid infusion this past week but it really only helped for a couple of days, now symptoms are worse again. Has anyone else experienced this? I was told by infusion nurse that meds linger in your system for a while so Gilenya should still be active but obviously I’m not quite believing that theory. Coincidence that quick downward slide is happening just at the time I’m without meds?? Have I really hurt myself by stopping one to start another?
Thanks for any opinions....

[KoKo]

Hi..I was diagnosed 30 yrs ago and I’m lucky I’ve done well til a couple of yrs ago. Now it seems a steady, slow decline. Been on interferons for years, then Gilenya since last June. Having my first dose of Ocrevus on April 5....had to stop Gilenya for 4 weeks before getting first dose. Within 4 days of stopping, my symptoms were noticeably much worse. Had 3 days steroid infusion this past week but it really only helped for a couple of days, now symptoms are worse again. Has anyone else experienced this? I was told by infusion nurse that meds linger in your system for a while so Gilenya should still be active but obviously I’m not quite believing that theory. Coincidence that quick downward slide is happening just at the time I’m without meds?? Have I really hurt myself by stopping one to start another?
Thanks for any opinions....

Hi AM1958 ~

Could it be a Gilenya rebound effect? But according to the article, that usually takes longer than 4 days to happen.

https://multiplesclerosisnewstoday.c...rther-studies/

In any case, hope you recover and feel better soon.

Take Care

[Temagami]

I switched from Gilenya to Ocrevus and was off meds from early December of one year until early April of the next waiting for the lymphocyte count to rebound. Gilenya has a rather long half-life so I would not worry too much about having no meds while in the transition stage. For me, discontinuing Gilenya almost coincided with not working and I did not relapse in that waiting period whereas I had recently prior. I say that to encourage you to look at the sources of stress in your life and address them if possible. Lower stress has a huge beneficial impact on me.

[AM1958]

Thanks for the encouragement. Believe me, it’s appreciated!
I do know how stress can reek havoc on this already crazy disease and I do try not to let that happen. It just seemed too coincidental that I have a relapse at the same time as stopping the med.

[Myoak]

Hello,

Treatment decisions are notoriously difficult in MS so please don't beat yourself up about switching to something more effective than Gilenya. No one can predict precisely how well the transition period from one med to another will go. You and your doctor were in agreement to go for something more effective and the future may prove that was a wise decision.

In the meantime please keep your doctor informed about your symptoms.

The problems you are experiencing now may turn out to be quite short-term and very soon things will turn for the better. Ocrevus begins having a therapeutic effect almost immediately. I'm sure you feel April 5 cannot come soon enough, bless your heart. You are in my thoughts and prayers for strength and health. Hang in there, you will make it!

Rolly

[AM1958]

Thank you Rolly...day at a time!