newdave 28/01/18
Last reply 5 months ago
Change from Gilenya to Lemtrada or Maven

My sister has highly active MS which was well-controlled with Gilenya (2yrs). She is 28 yrs old now so her neuro mentioned if she’d like to be a pregnant in the future Gilenya is not an option for her and recommends Lemtrada cause it’s an induction therapy.
After this discussion my sister decided to switch to Lemtrada. Her neuro told she needs a washout time, when her lymphocytes count reach the lower range of normal level (4-8 wks).
I read this strategy might be risky cause after washout of Gilenya 10% of patients has a severe rebound. I do not know what is the good strategy. I think it is a simple Russian roulette…

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5 months ago

@newdave , it’s a difficult decision for any young lady with MS. Do you stay with a treatment that is conserving your health or give in to the maternal callings of your body clock?

There are lots of ifs and buts involved in this decision. MS is so unpredictable that anything could happen at anytime, whether you’re taking a Disease Modifying Therapy (DMT) or not.

Washout periods are always risky, but you should never give up on your life’s aspirations because of this risk. Hopefully, the enhanced “joie de vivre” will carry your sister through.

5 months ago

Your sister should ask her neurologist what non-lympocyte depleting drug she can use to cover the wash-out period. She should be given options like the interferons, galtriamer acetate and maybe terifluonimide (Aubagio). At the very least, the wash-out can be covered by steroids.

Doing a drug-free washout period is quite a high risk strategy, and not necessary.

5 months ago

@sciencegeek unfortunately this washout is necessary cause this is the regulation of European Medical Agency. Nobody can switch from G without a normal range of Ly. And injections need months to start working and my sister failed with Copax and Tec before G.

5 months ago

@newdave – I get that. She should ask for steroids to cover her wash-out at the least. I know you need lymphocytes in the normal range to start any of the drugs and especially Lemtrada, but a drug-free wash-out isn’t required or necessary.

I work with a lot of neuros, and MS researchers too, and none of them support drug-free wash-outs after Tysabri or Gilenya for their patients in the US. They all consider it too risky, because of the rebound relapses that happen.

5 months ago

@sciencegeek I told that she is JC negative so we could switch to tysabri without any risk and after – when her blood level is normalised – we can switch to Lemtrada. This is a fucking situation and I am very stressed about it. In this situation Gilenya is a fucking trap not only for Lymphocytes but also the patient too.
Before Gilenya I told we choose Tysabri her neuro (not the current) told we could not to switch to Tysabri, cause it is not necessary. Her EDSS changed from 0 to 3,5 only 2 and the half year!!
I am very-very embittered. This is a fucking Russian roulette but I don’t know another possibility to change an induction.
Maybe I convinve my sister to continue cause currently she is stable with a very slight decline…

5 months ago

I can undersand why you would be very annoyed. The risks of stopping Tysabri and Gilenya are not always well understood by patients (and maybe even some neuros). The problem with drugs that block lymphocytes rather than stopping production is that the autoimmune lymphocytes are there, waiting to attack when you stop the drugs.

You might find that your sister is eligible for HCST if she is interested in that route of treatment. Lemtrada also sounds like a good option for her if you can mamage the transition off Gilenya. She could also put it off until she is planning a pregnancy. Pregnancy is protective in itself for many people with MS.

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