Neuro visit today and Tecfidera 😀

[bxrmom]

Neuro visit today update! Besides the lady that was an hour late for her appt and got to go before me, it was a descent visit. An in turn was with my Neuro today so I'm not sure if that's why he did some tests in the office on me. Neuro also explained differences between different oral meds. He made sure that Tecfidera was what I wanted to go on and then got the ball rolling for me to start it. I had blood work right after my appointment. A big surprise to me was that the company had already contacted me today. They also said financial assistance was available, but would have to wait to see what my Medicare Part D would pay first. Then we can move forward with the financial aide part. Neuro also ordered mri since some symptoms have been getting a little worse and it's been a couple of years since my last one. At past appointments he said he doesn't order contrast, so we will see if he ordered that or not. So today was a good day 😀

[Morllyn]

Glad your appointment went well. Hope the Tecfidera works well for you!

[WAshingtongirl]

Happy to hear your appointment went so well. 😊

[Jesmcd2 CommunityAmbassador]

That's great news bxrmom ! Are they also checking your vit. D levels? I'm just curious, cause l had to ask for mine separately. Let us know how the MRI goes☺

Did you take your list of questions? And did he answer them​for you?

Jes🌠

[bxrmom in reply to Jesmcd2]

Jesmcd2 Yes, he had my vitamin d levels and a couple of other ones that I don't think I've ever had checked as well Received a call this morning and my appointment is scheduled for April 5th (next Wednesday) with arrival time at 6:30am to check in and register for 7am appointment. I didn't have a list of questions with me, but everything that I wanted to cover was covered this time I just wonder if it was because he had intern with him though, so we shall how my appointment in 3 weeks goes.

I did have a lady from Biogen call me yesterday to verify everything that my Neuro's office sent over to them, which I was very surprised as I expected someone to call today at the earliest. I also found out from talking to the lady from Biogen that they do offer financial assistence if the co-pay is too much. I currently get my Copaxone from ACS and she was familiar with them. She said that they have to check with my Part D insurance to see what the copay would be before I can apply for assistance. So one step at a time

Jessie

[greaterexp]

Thanks for sharing your good report. We love good news!

[RoyceNewton]

u will love tea, I think says it has side effects, but I never met someone who had one. Great choice great drug.

Royce

[bxrmom in reply to RoyceNewton]

RoyceNewton That is great news about the side effects, I hope that I am lucky like them and don't have the side effects or not too bad if I do. If possible, I plan to wait until I get back from vacation next month April 23 in case I do get any of the bad side effects. Would make for a miserable vacation if I did have the side effects and not being at home to deal with them for the first time. Will definitely keep everyone updated on how things progress

Jessie

[Hstrychick81 in reply to bxrmom]

I'm one of those people who had truly awful side effects. My best advice is to make sure you watch your white blood cell count.

[bxrmom in reply to Hstrychick81]

Thanks Hstrychick81 for the advice. I will definitely do that.

Jessie

[1RiskyRich]

Ask him about HSCT. It stops progression in 93% of the patients. 88% of those 93% see symptom reversal. Isn't it funny how the MS medications only have to work 50%? If your Nuerologist doesn't know seek a Hematologist.

[Amore55]

One thing to know abou Tec is the main side effect is flushing. When you start it, the first week is half dose. I had no problem that week. So I thought I would experimen" to see if I would flush. The first day on full dose was fine. The second day was a Sunday, I took my dose, got a bowl of cereal and settled in to watch the Sunday political shows with my hubby. Next thing I knew he was freaking out saying "are you okay, you are beet red". I was burning up, my skin looked like a lobster and I was miserable. It lasted about thirty minutes, then faded. Since then I do what was suggested to me, I take an uncoated aspirin twenty minutes before I dose and no more problems, except I get a little hot. The only place I could find uncoated aspirin was on Amazon. I looked in every store you can imagine. But the bottles on Amazon are 1000 coun!! Will never run out of aspirin. I hope this info helps, believe me you do not want to flush. Kelly 😝

[bxrmom in reply to Amore55]

Amore55 Thanks so much for the info, it does help. Biogen is sending me out a welcome packet with info. My Neuro also mentioned something about taking aspirin for flushing, but did not go into much detail (that I remember anyway) about uncoated aspirin....Didn't think that was a thing!! Will DEFINITELY be looking into that to have on hand!! I already get hot because my family gets cold easy and always has the heat up very high so I have a fan on my desk that blows right on me

Jessie

[bxrmom in reply to Amore55]

Amore55 could you send me the Amazon link for the uncoated aspirin on Amazon as all that I am finding is the coated aspirin though it looks like it wouldn't be coated in the picture.

Thanks again for your suggestion

Jessie

[Momjules]

I was on tecfidera for 16 monthes.

My set of mris showed new active lesions. On my spinal cord.

My white blood cell count was very low.

We are all different but keep a good eye on these things.

[bxrmom in reply to Momjules]

Thanks, Momjules That's another reason I want another Neuro because my neuro only did the first set of blood work when I first started Tecfidera, but not again at 6 months. I'm coming up on a year soon. So when I go to my new Neuro I'm sure she will do the blood work when I see her in July and most likely order a new MRI as well. My appointment with her is just a couple of weeks off from when I was scheduled to see my other Neuro so that worked out well

[Momjules]

My old Nuero did my brain and neck mri in 2015

She didn’t do my spine

Last month a got a new Nuero since I moved last November.

We found new active lesions just killing my spinal cord. I blame myself because I thought about it but she said only the neck and brain.

Be very firm with these doctors.

Now I have to worry my spinal cord is affected.

Good luck to you.