Starting with tecfidera
 

I got 4 attacks of optical neuritis in the last 3 months and the doctors are not sure if it is MS or not as it is not common to have repeated attacks like this. But, they are going to pot me on Tecfidera first and if it doesn't help then they will go for tysabri or gilenya.

But I am really scared about the side effects of tysabri which is JCvirus causing PML and gilenya causing slow heart rate..

I really can use some advice and support from you guys.

Thanks and Regards,
RajKP

I'm not taking any of those meds Rajkp, but I hear that Tecfidera only helps to
slow the progression of MS and doesn't really cause any improvements. It could,
however, cause your ON attacks to stop? I think I'd give it a try.

Others who are on TEC, hopefully will chime in with their words of support.

Welcome!!!:grouphug:

Hi Sally,

Thank you for your reply.
If you don't mind, I want to know how it is without using any DMDs for MS.
Will this be any difference in comparison to not using them .

I have used some DMDs in the past... 1st Avonex (couldn't take the SEs and
after 7 months, stopped it. Took Copaxone for 10 mos and it wasn't working
for me, so stopped it also.

I am now SPMS, in a scooter and doing pretty well....staying stable.
This is my 50th MS year.:eek:

I am a bit worried with my situation. I do not want to use the second line medicines which are having adverse side effects. I hope tecfidera works for me.

I am 28 and recently got diagnosed with MS. The doctors say my repeated ONs can be because of MS. It's an unexpected twist in my life and I hope god gives me the strength to deal with it

Hi Raj! Hope the Tecfidera slows down the frequency of the ON attacks, or (fingers crossed) stops them completely.

I've been on Tecfidera since Summer. Only side effect I've had is a flushing (reddening) of the face and sometimes upper body, which may or may not be accompanied by a sunburned feeling. For me, each side effect event lasted maybe 20 - 30 minutes, and went on for maybe 3 months (lessening over that time).

This, coming from someone who very rarely is affected adversely by any medication. I did 3 years of Avonex with no flu-like symptoms, which can have some people laid up for days.

Because I wasn't having flare ups before, I cannot say whether the Tecfidera is working for me or not. I just hope it keeps flare ups from ever occurring, or if I'm Secondary Progressive (which I but not my neuro believe), keeps me from getting worse. I'm still very active, driving, hiking, some slow jogging.

I have been taking Tecfidera since March 21, 2014. I'm in my 7th month.

Like Sparky I have had the minor flushing side effect but it's much less severe now and hardly ever happens anymore.

When taking Tec you must have your blood checked at least once a year. My Neuro does it every 6 months.

Tec is supposed to lessen the frequency of flare ups so you really won't notice an improvement but you will notice the frequency of flare ups will be less. Guess that can be considered an improvement.

Some folks have had GI side effects (diarrhea, nausea and cramping). I have not had that side effect. The flushing occurs most often when I don't eat before taking my pill. It's tolerable although uncomfortable. Feels like a sunburn but does go away.

I hope your insurance will cover the Tecfidera. It's very expensive. I have only Medicare so I've been fortunate enough to qualify for Patient Assistance through Biogen.


Good luck!

I used tecfidera for a week during the end of September 2014 and I got these small red spots on my body and they kept on increasing. When I went to the neuro for my 4th ON, I told the doctor about these red spots ans she asked me to stop tecfidera. After treating me for ON, they asked me to give another try with tecfidera. I hope it works this time.

Thank you very much for your inputs and advices :)

I started out with optic neuritis and dizziness. I tried Rebif and lasted for 2 weeks -- it made me sick as a dog and couldn't get out of bed. Also had a deep black depression. Then 6 weeks of Copaxone which gave me rapid heart beat, anxiety and terrible headaches.

This was all before pills so I went with the big guns and took Tysabri. I immediately noticed my vision got much sharper. No relapses (knock on wood). If you are JCV antibody negative I would recommend Tysabri as a first line drug. I am SO happy with it.

I always wanted to be on a DMD to prevent any progression of any kind.

Good luck with your choice!😊

A bit of bad news for TECfedera!!!!


http://www.bostonglobe.com/business/2014/10/22/biogen-idec-reports-death-patient-that-had-taken-its-multiple-sclerosis-pill-tecfidera/xrAtOBsxA7eHZN3BB0phxJ/story.html

Sorry..:(

This is why it's important to have your blood checked twice a year. Low white blood cell count can identify a problem before it gets out of hand.

Looks like this possibility of PML on Tecfidera was not unforeseen.

http://multiplesclerosis.net/news/pm...for-psoriasis/

One of the cases is described here:

http://www.nejm.org/doi/full/10.1056/NEJMc1211805

Looks like all the DMDs other than interferon and copaxone are having fatal side effects..the number might be less but it is frightening.

Hi. I have been on Tec since March. Doing well with what I consider minor side effects. The first few months were rough, but I expected that as I had been warned that if I could ride out the first 3 or so months things would get better. It was as if my body was fighting getting used to having Tec - bad gut pain, bathroom issues, vomiting, worn out feeling.

Now I have the occasional gut pain (not horrid pain, more like gas pain or stomach flu pain) rarely lasts more than 1/2 day. "Flushing" which for me is feeling like I have a burning/bad sunburn sensation & pink/redness from upper chest to top of head (sort of like how some people blush really badly). I use a cool, wet cloth and ride it out. Doesn't last too long (15 mins) My blood work looks fine. They have discovered that aspirin or benadryl helps many with flushing and eating helps with GI issues.

For me Tec was a financial decision. Since I have Medicare it was one of the drugs that would quickly assist me in getting financial help to pay for a drug (they hook you up to an org that will provide assitace to people withgov't back insurance, many of the MS drug co-pay help programs disqualify those with govt backed insurance from eligibility). I plan to stay on Tec as long as I can get it or my doc & I feel I need to switch.

Low white blood counts is one of the things to look out for. The patient who died had pneumonia and had low white blood cell counts {for 3+ years!}. In other words, she probably should have stopped the drug a while back till her WBCs got back up to a good range - as white blood cells are the things that your body uses to fight off any infections. Her infection eventually spread systemically to her brain (PML). I'm not saying I know the reason she dies was or was not Tec related - but I think she was essentially set up to get into some serious trouble if she got any infection.

Remember that none of the MS drugs will cure you - they all basically help to reduce prograssion, some also reduce disability and/or flares. Tec does all 3, others drugs also do all 3. IMO it's all a crapshoot and finances plays a big part for many of us.

Good luck with whatever you choose!