New Medicine

[nicoly3467]

Hi MS Friends,

I haven’t posted anything for a while because I’ve been feeling terrible for over two months. Have had more weakness and extreme nerve pain. I’ve been on OCrevus infusion for over a year, but this turned out to not be a good treatment for me. I skipped my next infusion of OCrevus-was due now in early December, so I could start new MS medicine called Tecfidera-oral medicine.

I’ve never taken an oral medicine before (2 different injectable medicines then 2 different infusion treatments). This is the first time I chose an MS medicine myself after reading about the 3 different oral meds available then read clinical data and info. Tecfidera seemed like the best option for my situation. I told my Neurologist this could help me more in reducing my frequent relapses and she agreed with new plan. I like the different mechanism in body what it does, compared to my former treatments.

Upon wakening today, I had much less body pain and during the day. Pain scale today-5/10 compared to 9/10 or 10/10 *extreme pain all day-everyday last two months. I am happy about this so far and wanted to share.

Hope you are all doing well.

Nikki

[Angid1122]

I use to be on Tecfidera and vb I thought it was real good. I'm happy to hear that the new meds are helping. Hope it continues! Prayers!

[nicoly3467 in reply to Angid1122]

Thanks for your support and prayers! Glad to hear that Tecfidera worked well for you before.

[greaterexp]

That’s thrilling news! Yours is another example of the individuality of the human body. What works well for one may not be effective for another.

How happy we are that your pain is reducing!

[nicoly3467 in reply to greaterexp]

Thanks so much and how true that is-how each of us respond differently to a treatment, in hopes to find the effective one.

[jimeka]

Good news for you, I hope that the new treatment continues to reduce your pain, and make you feel as though you still have a life. Enjoy your Christmas 🎄 blessings Jimeka 🦋

[SometimesCrazy]

Oh that is just wonderful. Pain is so exhausting. 😊

[Raingrrl]

I hope that Tecfidera continues to work for you!

[Elizt3]

I’m so glad you’ve found a good treatment. Great news!

I’m getting ready start Ocrevus. Do you mind saying anything about your Ocrevus experience?

[nicoly3467 in reply to Elizt3]

Hi Ethyrum,

Sure, I’m happy to share about my OCrevus experience. Just want to let you know that my experience may be completely different from your OCrevus experience, which may be very successful including anyone else taking it. Each person’s body responds differently to the same medicine. So, please don’t be discouraged with my story.

I started OCrevus last year in June 2017. The first 5 months it seemed to give me more physical stamina and less nerve pain, which I was happy about. However, I had daily fatigue, some days more intense, which has been my worst symptom since MS Diagnosis 5 years ago.

in May this year, I had a bad relapse that I didn’t recover from and recovered from others in the past. I have a permanent disability now. I’ve learned, the more time that passes with MS since it progresses slowly, the harder it is to recover from a relapse. I started using a mobility scooter in May around the house to help conserve the small tank of energy I wake up with and to help me get around the house when my legs fizzle out. A month later in June, I still couldn’t stand or walk longer than 10 minutes with a cane, which worried me. My brain MRI showed a new lesion on my cervical spine so this explains more leg weakness and numbness as my doctor said. Also, I had 2 UTI’s later, which I never get and another smaller infection. Then in October, I had a minor relapse again so that’s why I made change to Tecfidera ASAP.

As you may have read from my post, I have an aggressive type of RRMS with frequent relapses (2-3) per year on average since Dx. I’m hoping this new treatment will be able to knock down relapses much more or to none would be ideal!

I’m wishing you the best on OCrevus and hope it helps you a lot!!

Nikki

[Elizt3 in reply to nicoly3467]

Thank you for taking the time to share your experiences from the last year (plus). I hope that Tecfidera helps you a lot and diminishes/arrests the relapses.

I definitely appreciate that each of us is unique and responds to these medicines differently (Aubagio didn’t do it for me....had mri progression and a relapse...that’s why I’m starting O in January).

I wish you the best. Elizabeth

[lbenmaor]

I'm lad you're feeling better.

Leslie

[JTZES]

I don't want to be a downer but I've been on both and Tecfidera had many side effects for me and wasn't as effective as the Ocrevus.

Good luck with it. We're all different and I hope it works well for you.