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my rebound experience awaits me...
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my rebound experience awaits me...

Anyone gone on the drug holiday?  Am now going into my 2 months of holiday and am a bit nervous over it.  Neuro told me 70% chance of new flares/lesions and can't say that makes me happy.  He wants me on Gilynea? but think cardiologist will veto that, and then there's the once a day pill starts with A, that one looks interesting but still waiting for antibody and liver blood tests results to come back.

Have promised myself not to consider every little twitch as a symptom!
8 Comments Post a Comment
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1983221_tn?1333509785
I've never been on a drug holiday.  Do you have to take a 2 month break before switching prescriptions?
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I think many of the DMD drugs want the "old" drug out of your system before you can start another one.  So there is no conflict.  Im on holiday because of severe allergic reactions.  The neuro and I picked 2 months because to switch to the oral meds required 8 weeks off of any DMD.
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1983221_tn?1333509785
Good to know.  I'm hoping to switch from Copaxone to Gilenya.

I hope your drug holiday goes well with no new flares!
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Avatar_f_tn
be sure and read the patient information insert on Gilenya.  After I read all of it, I didn't want to be on it anymore, so am waiting for the new one that starts with an A, that you take every day
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1710955_tn?1309450073
I'm on a holiday too!  It's been great.  My neuro took me off Rebif on October 2, because the Rebif was causing me intense anxiety!

I haven't been put on anything else because I'm having major surgery on the 30th.  After I fully recover my neuro wants me to start gilenya.  I have a lot of reservations about it.  I'm contemplating whether I want to be on anything right now. If I feel so great being off my meds, why try another one and feel miserable every day?

I have plenty of time to think about it, and to try and figure out the pros and cons of being on gilenya, going back to copaxone (that was my original med), or take a longer holiday with no meds!

Laura
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1337734_tn?1336238191
Hi Sarah,

I have also been on a drug holiday. I was taken off Copaxone on August16th.
Since then I went on a 5 day steroid infusion treatment. I have to admit that I'm feeling better than I have in years. I am waiting to start Gilenya. I have finally completed taking all the needed vaccines (Chicken Pox, Flu and Shingles) and all the blood tests. The last thing that I needed to do was have an EKG. Unfortunately the EKG I took last week showed abnormal results so now I am waiting to see a cardiologist. I have an appt. in 2 weeks. Hopefully, things will turn out with better results so that I can finally start the Gilenya. Although I am feeling better I am crazy nervous about being DMD free this long!

Deb
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glad you told me about the vaccines.  I have had chicken pox, am wanting to take the shingles but can't afford it and will NOT take the flu shot.  I have never had the flue and am not "warping" whatever immune set up I have!
I battled the hospital when I worked and totally refused to take it.  I think my urologist will veto the Gilenya anyway due to my kidney stones and absent seizures and have not heard back from the cardiologist yet.

Thanks for chiming in.....i'm off to visit my son tomorrow so will be on the road for a week so it will take my mind off of it.

Keep us posted!
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1337734_tn?1336238191
Hi Sarah,

My hubby feels the same way as you about not taking the flu shot! I don't believe the flu shot is required for Gilenya anyway.

Enjoy your road trip  :)
Deb
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