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Starting treatment

Hey everyone, i have 4 weeks to decide which treatment id like to start for my RRMS. I have 4 options to choose from and i want some opinions on the treatments you went through and a little background on how it was and what side effects you experience.

  1. Mavenclad
  2. Tysabri
  3. Ocrevus​
  4. Lemtrada

My ​neuroligst recommend Lemtrada, as its a new treatment? its all so frightening and confusing trying to pick one. all of your help will be greatly appreciated.

Hi

It’s so difficult, you’re getting your head round a diagnosis of MS and a neurologist throws you a list of scary sounding drugs and says: ‘pick one’! How on earth are you supposed to do that?

To start off with, have a look at https://www.mstrust.org.uk/about-ms/ms-treatments/ms-decisions-aid The decision aid splits the drugs into 3 groups, depending on their efficacy, and which people NICE have decreed qualify for them, they are split into category 1.1, moderately effective, these all have a relapse reduction rate of about 30%; 1.2, more effective, with a relapse reduction rate of about 50%; and 2.0, highly effective, which have a reduction rate of about 70%.

You’ve been given the options of Mavenclad (aka Cladribine) from category 1.2 and the other three drugs all from category 2.0.

Mavenclad is an oral therapy, with a course of the drug taken in 2 tranches, a year apart. To me it looks like a reasonable option, but it’s quite a new drug so there’ve been less people take it.

Tysabri, Ocrevus and Lemtrada are all given by infusion. Tysabri monthly, Ocrevus every six months and Lemtrada again in two stages, each a year apart. Their more effective results is balanced by in some cases fairly serious potential side effects. From the standpoint of having just looked at the different drugs (no one is likely to have taken them all, I’ve taken Tysabri but had increased liver enzymes as a result so had to come off it), I personally like the look of Ocrevus best. The side effects listed are less serious while the benefits are about the same as the other drugs from this category.

You really need to look at the different drugs, see what the benefits are as balanced against possible side effects and discuss the options with your MS nurse, and with your family and friends as the decision will impact on them too.

For personal experiences with the various drugs, you might find https://shift.ms/ to be quite helpful as there are a lot more users of the newer and higher category drugs.

Best of luck.

Sue

Happy Saturday! I had my first three relapses between 10/17 and 04/18… so Lemtrada was the obvious choice. Thankfully my movement and fitness is incredible, I had no side effects from round one. Hopefully round two will be the same :slight_smile: The thing that put me off most was a monthly hospital visit for a blood test, however the manufaturer pays for two people to test patients at home. Best of luck, Rich