After 2 years, I have regretfully quit Tecfidera

[Marco]

Four years ago, I made a card for my neurologist that said, "All I want for Christmas is my BG-12." Even before it was released, I was a proponent of the medication and predicted "blockbuster" status.

Two years ago, Tecfidera (BG-12) was approved and I immediately started taking the medication. Being sensitive to medications, my neurologist kept me on the smaller120 mg dose for a full month. Tecfidera helped stabilize my MS and has kept me flare free and out of the hospital longer than any other MS treatment. During this period of remission, I have made significant gains and my quality of life has dramatically improved.

For the past few months I have had persistent and painful 24/7 flushing. The abnormal flushing reduced my quality of life below an acceptable level. Unfortunately, last Sunday I took my last dose of Tecfidera and each day my flushing has improved. Eight days after my final dose, I am still having periodic flushing where my body will get inflamed and turn deep red. I have always been sensitive to medications so this reaction is more disappointing than surprising. I am still a dedicated believer in Tecfidera and believe it offers a wonderful benefit versus risk ratio for the majority of MS patients. I would have no reservations about suggesting Tecfidera has a treatment for a loved one.

My neurologist has suggested that I now choose between Aubagio and Gilenya. I am JCV+ so the neurologist wants to remove Tysabri from the equation. I personally want the neurologist to consider Tysabri and Lemtrada as viable options. The conversation with the neurologist on July 29th should be interesting. Only time will tell ...

[tracibk]

I am sorry Let us know what you decide to take.......I wish you the best and hope you do well with it!

[KitOP]

Marco, It makes me very sad to read your post. I know how excited you were to start Tecfidera.

I also know that you have a great Doctor and a great relationship with your Doctor. You will make the right choice for you.

I wish you the best of luck and a good outcome in your choice.

[TinaP303]

You sound really bummed, I'm sorry.

[Marco]

Marco, It makes me very sad to read your post. I know how excited you were to start Tecfidera.

I also know that you have a great Doctor and a great relationship with your Doctor. You will make the right choice for you.

I’m still excited about Tecfidera. It helped stabilize my MS when things were really going haywire and I got 2 full years of substantial benefit. I wish every one of us could have essentially 2 years of remission so we can catch our breath.

Unfortunately, I no longer can go to my old neurologist for medication decisions. Since I am now enrolled in the VA healthcare system I no longer qualify for co-pay assistance programs. That leaves me dependent upon a VA neurologist for my medication needs.

I am sorry Let us know what you decide to take.......I wish you the best and hope you do well with it!

I had hoped to remain on Tecfidera a few more years until anti-LINGO-1 was available. My next choice would be Tysabri even though I am JCV+, but I do not control a prescription pad. I will need the VA’s neurologist to write a prescription for Tysabri that he has already “ruled out.” In my only previous meeting with him he had also said he wouldn’t be comfortable writing a Lemtrada prescription for a few years. I might ask him for Rituximab or methotrexate and see if he’ll compromise back to Tysabri.

[REG53]

Marco, I am so sorry. I hope your next choice will help you.

[JerryD]

I am so sorry to read of your dilemma! I hope your next med works well for you. You are in my prayers. Good luck

[bree2013]

Marco, sorry to hear you had to go off Tecfidera. I know you believed in it and it gave you two good years.

I hope you and your doctor can agree to a medication that satisfies / works for you. Don't know if in your "negotiations" you mention you'd consider Tysabri every 6 weeks instead of the usual 4. (of course your doc would have to believe this would be beneficial for your MS AND lessen likelihood of PML). Just a thought.

Good luck,
Bree

[KateA2]

Dear Marco,

Sorry to hear about your Tec-troubles! I really enjoy reading your words of wisdom on here. I hope the process of finding an alternate medication isn't too stressful and is resolved to your satisfaction soon.

[carolynj]

Hi Marco....
I am in the same predicament you are... Doc said no more Tecfidera! I think I can say that I have given it my best though. 2 1/2 years. Now what? I go see my doc in a week to talk about a new med. Have you decided yet? What are you considering?

[Marco]

Hi Marco....
I am in the same predicament you are... Doc said no more Tecfidera! I think I can say that I have given it my best though. 2 1/2 years. Now what? I go see my doc in a week to talk about a new med. Have you decided yet? What are you considering?

I started Gilenya this week. The neurologist really gave me no other choice. I would have picked Tysabri or Lemtrada before Gilenya, but I don't have a prescription pad.

[MSW1963]

Marco and anyone else with similar Tec side effects.

First of all Marco, glad to hear you got 2? good yrs with Tec. It wasn't until I received the starter shipment that I too wished my doc had rx'ed a longer period for the 120mgs. My tolerance was more than I ever hoped for at the 120mg dose, felt more alert, although I had the mild sensation of being aboard a ship in the middle of the Indian ocean.

I started the 240mg earlier this week, with the flushing in about 4yrs., until I picked up Aspirin. No problem since starting Aspirin dosing.

The 2nd day things took a bizarre turn. My pupils stayed dilated until I lost vision, and my 'burning cold painful arms' started waking me through the night. The 2nd day I kept indoor lighting to a minimum, but with the same vision problems, accompanied by words and letters, when reading, resulting in cognitive? difficulty.

Nothing above that is included in Tec side effects, at least not that I'm aware. I hope my tolerance improves soon, and the vision/cognitive side effects improve.

Best of luck and I hope Gilenya works out for you.

[MSW1963]

Correction: I did not flush for 4yrs before picking up Aspirin. jk. 4 hrs before onset of flushing, then aspirin.

[JerryD]

Hang in there, Marco. I am pulling for you and whatever DMD that you pick ! I hope and pray for something real good to come out of Dr. Sadiq's stem cell treatment and that it will put an end to this stubborn reliance on pharmaceuticals to 'treat' all of us MSers. Good luck Don't be a stranger !

[Marco]

Aspirin did nothing for my flushing.

I started Gilenya last month, but the neurologist stopped treatment after less than one week. Gilenya caused my BP to increase by 45 points into a state of hypertension. Of course, that is a side effect listed in the prescribing information that impacts 8% of patients. My neurologist and I remain at a crossroads about my treatment options. He's old school and believes you should ratchet up medications to match progression. I believe you should use most robust treatments to prevent the progression.