Help -How did you assess your options when choosing a treatment? I need advice please

New diagnosis and before diagnosis
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Hello,

I have highly active relapsing remitting MS diagnosed in March 2016. During this time I have postponed treatment to have a baby. Baby has now arrived & it’s time for me to select a treatment. However I have been weighing up the pros & cons of the treatments for Tysabri & Lemtrada and to be honest I am currently thinking what is the point in taking a significantly high risk drug to suppress/treat a potential relapses for 1-5 years when I can quite easily manage/ treat a relapse/episode myself with either pain relief or steroids. Why take the risk? Can I ask how you evaluated your treatment options? Ideally I would love to speak to someone in a similar boat to me to ensure I have explored every angle before I put a very hard core drug in my body.

Currently I am 3 months post partum & my ms flair ups are gradually increasing- almost every night when I wake to use the bathroom my feet feel tired & heavy almost like I have been walking on them all night. I am also experiencing painful achy legs every few days which cannot be treated with pain relief. During my pregnancy I had a significant relapse at the start and I chose not to take the steroids- I was extremely fatigued & slept 20-22 hours of the day, I also had severe dizziness. I was absolutely fine during the 2nd & 3rd trimester and I actually forgot I had MS. Pre pregnancy I had a major relapse which led to my diagnosis this lasted 2 months and then I had about 2-3 mini episodes before I became pregnant. Episodes ranged from blurry vision to ringing in the ears, to feeling like someone was pulling on my hair from the back, vibrations & tingles in my fingers & toes & sporadic days of extreme fatigue (approx 3-4 days over 6 months)

I guess I am trying to figure out if I am better off staying as I am and deal with the relapses as and when they come and also deal with any disability that may arise (none currently) or risk getting PML on Tysabri- I am JCV positive, or risk getting thyroid,kidney or internal bleeding disorders on Lemtrada which are all treatable but at least I don’t have a risk of dying which I am at risk of on Tysabri. Or I stay as I am! Decisions decisions. How did you evaluate your options?

A

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hi A

you have thought hard and deep about it and have covered the bad side of DMDs.

really the reason for taking one is like taking insurance out.

insure your house and if it DOESN’T burn down that’s good.

insuring against more relapses and higher risk of disability won’t mean that these downers won’t happen but at least you are doing something to protect yourself.

it is a very hard decision to make especially with a young baby.

only you can make it sweetheart.

talk to your ms nurse and air your concerns to her or him.

the aching, painful legs aren’t good. this could be spasticity.

again talk to your ms nurse about this.

meanwhile have loads of cuddles with your baby and sniff his or her head because the scent of a baby’s sweaty little head is so sweet.

carole x

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Hi

With regard to your JCV status, these days the risk factor is more refined than just JCV+ or not. The test can narrow down your chances of developing PML much more clearly than just you might or might not. So, perhaps the question with regard to Tysabri is not related to positive or negative for the antibodies, but where are you in terms of risk. And you should be able to get that information from your neurologist or MS nurse.

Carole is right about a DMD being an insurance policy against relapses which could lead to progressive disability.

If your options are just Lemtrada or Tysabri, then I can understand your fears. But even though you have been given these options because your MS is deemed highly active, if you’re reluctant to take either one, then you could still take something like Tecfidera. It isn’t as effective as either of the more heavy duty drugs, but you might feel less nervous about being on it.

Sue

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Thank you for your replies Carole & Sue x