Last reply 3 years ago
Tecfidera

Hi – Someone I know who also also suffers from MS (Well, she has PPMS) has started taking a new drug called Tecfidera.

Does anyone have more information or want to share their own experiences with this? I’ve heard the side effects are awful.

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stumbler
3 years ago

@ksnoop , there are a few members that are on Tecfidera. Hopefully, they will pass on their first-hand experience.

From what I’ve heard, Tecfidera can cause stomach upset, so the instructions about taking the drug following a meal do need to be followed to mitigate this risk.

The other thing that I’ve heard is that the drug can cause flushing shortly after taking it. This may be a little uncomfortable and embarrassing, but doesn’t seem to last too long. Flushing does seem to diminish as the body gets used to the drug.

Having said all that, Tecfidera is one of the Disease Modifying Drugs (DMDs) that are used to reduce the frequency and severity of relapses in relapsing/Remitting MS (RRMS). I don’t believe that it has been approved for Primary Progressive MS (PPMS) as relapses aren’t a feature of PPMS.

Perhaps your friend has a neurologist who follows his initiative, rather than the NICE guidelines.


lucinda
3 years ago

Hi @ksnoop

I’ve been on Tecfidera since November, first DMD I’ve been on.

Side effects, all I’ve had is a bit of flushing and wasn’t bad at all. I haven’t had any stomach problems (cramps and diarrhea) which some have have spoke about.

Personally I believe you need to nourish your body correcting before taking it. I have meal replacement shake made with soya or coconut milk one hour before I take the Tecfidera.

Everyone is different and reacts differently but personally I think it’s okay.

Message me if you would like to know anything else.

Lucinda


wilf
3 years ago

I started it on Friday, on a lower dose for a week to get used to it.

I think there are less side effects that other DMDs – as previously said flushing and stomach upsets – hoping I won’t be getting those, so far so good…

I think the trick is to eat lots so I may be getting fat!

The advantages for me are no needles and more effective than interferons.


graham100
3 years ago

Hoping to start soon. As I can no longer work I’ve decided to be a jet setter. Lol. and taking pills has to be easier that keeping injection cool. fingers crossed. I will be asking about lemtrada as well when I go Wednesday. If nurologist is there. If only ms nurse I won’t bother as she is a wast of space. Lol


schjo
3 years ago

@graham100 which hospital are you at?


Anonymous
3 years ago

I was on it for 1.5 years. It is essentially the same drug used in Germany for over 20 years to treat psoriasis. I am sensitive to a lot of meds and this was one of the worst for me. I flushed badly from head to toe and also had stomach distress. I eventually became allergic and switched to Gilenya which i have stayed on since its introduction in Dec. 2010 in the US. Biogen, who distributes tecfidera in the US, has reported at least a single case of PML associated with a patient taking tecfidera. Another downside is that you must take it twice each day. I think it is a relatively safe DMD for MS with good efficacy if it agrees with you.


Anonymous
3 years ago

@schjo forget Gilenya, diet and meditation and start Lemtrada as your neuro suggested! You could more than likely halt your MS completely with only 8 days of treatment and no threat of PML like you will have with Tysabri. Gilenya will not halt your MS and that means you are simply hoping that your next attack will not cause any permanent disability. I have been on almost everything including Gilenya and have been working hard to get Lemtrada approved here in the states. I have friends here that have had remarkable results while on clinical trial. We are lucky to finally have it approved and I am super happy to trade Gilenya (I had multiple attacks) for Lemtrada this month.


lugoues
3 years ago

@mbrsinc
Alemtuzumab (Lemtrada) isn’t all roses either as it is an immunosuppressive drug. This can lead to opportunistic infections, such as PML [1], in the worse cases. It also sticks around in your body for a long, long, time with the depletion of B and T-cells with B-Cells returning to levels after 27 +- 15 months and t-cells remaining depleted for 61 moths afterwards.[2]

1: http://www.ncbi.nlm.nih.gov/pubmed/22082208
2: http://www.ncbi.nlm.nih.gov/pubmed/15177782


Anonymous
3 years ago

People looking for a “bed of roses” to treat MS should stick with diet and meditation. There is no effective MS DMD that does not come with potentially serious side effects. Alemtuzumab (lemtrada) comes with many serious side effects, but I’ve never seen a single reference to PML; and if I did, it would not matter to me. I have already spent years taking Tysabri and BG-12 (tecfidera) which both carry risks of PML but no evidence of halting or reversing the progression of MS like Lemtrada. Alemtuzumab (campath) was given for years at much higher doses to treat B-cell chronic lymphocytic leukemia (CLL) and did have higher risks of side effects. One of the clinical trial researchers, Dr. Samuel Hunter summed it up best. “Alemtuzumab/”Lemtrada”, formerly known as CAMPATH is a real game changer. Also being marketed by Genzyme/Sanofi and copromoted with Bayer Healthcare. This is the most powerful drug ever seen in MS. It also has some significant medical risks, but the vast majority of people treated do not have a major complication. This a bioengineered targeted “magic bullet” monoclonal antibody for which TWO Nobel prizes have already been awarded. It has been researched in MS for over 20 years and the therapy was invented by the brilliant professor Alastair Compston at Cambridge University. I think he deserves a Nobel as well. It will save the lives of many, many people with worse than average MS. Alemtuzumab basically makes the immune system reboot by wiping clean a great fraction of the immune cells “lymphocytes” which are the dysfunctional, misbehaving cells causing MS. It induces wonderful remissions after two once-yearly treatments (IV 5 days the first and 3 days the second). It stomped a very good MS medication (high dose interferon-beta or Rebif). Most people do not need further MS treatment for years. Mild-moderate infections, mostly minor nuisance infections (yeast, ringworm, shingles) can occur in the months following treatment, but the immune system is amazingly intact.
The down side–people feel run down a few weeks after the annual cycle. A large amount of surveillance blood testing is needed because a large fraction (25%) will develop some kind of thyroid problem, usually overactive (hyperthyroid). A few percent have this severely and feel bad for an extended period of time and need radiation therapy (radioiodine) to treat a severely overactive thyroid. A few percent also can get a temporary bleeding disorder called acute ITP, which if detected early on a blood test is simple to treat with prednisone. Both of these illnesses, and a few milder and rarer ones occur, because the immune systems of people with MS are capable of generating immune cells which react against many of the bodies organs. About 1/3 of MS patients develop thyroid disease in their lifetime anyway.

So trading severe MS for an annoying minor thyroid problem is a good deal. Moreover, alemtuzumab is the first medication which reliably IMPROVES disability in MS patients.”

Lest we forget,or maybe we don’t all yet know, MS is not a bed of roses either.


lugoues
3 years ago

“…should stick with diet and meditation” = voodoo with no medical backing at all…


Anonymous
3 years ago

@lugoues , I am glad we agree! I addressed the post that you responded to @schojo who apparently is foregoing DMDs in favor of diet, exercise and meditation. She is not alone and those who hold those beliefs need some “tough love” to prevent them from suffering like many of us have (myself included). Take a look at @schojo’s profile.


jonnydrama
3 years ago

I’ll be on it next week, supposed to be better than copaxone reductions wise

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