Last reply 5 months ago
Choice to make

Neurologist told me on my 46th birthday that my previous meds for my RRMS have not been working and that although my last MRI said only small new lesions that I had brain atrophy. Let me also tell you that apart from fatigue and occasional tingling I am otherwise symptom free. I work full time as a nurse and part time as a fire fighter. I wear full gear go into fires and help extricate victims in car accidents. Now he want to put me on Lemtrada or Ocrevus. I don’t know what to think or do. I don’t want to be sick when I’m not sick. I’m so confused and overwhelmed. Please someone give me a helping hand!

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paulmorrison
5 months ago

Understand your concerns, and it is great that you are working full time and relatively symptom free. If your Neuro is offering lemtrada it is well worth considering to keep you where you are now.
Good luck with your decision and keep on keeping on.
Paul. X


californiadreamin
5 months ago

@firefrau26 How long ago was your last MRI? Its very difficult to measure atrophy over just a year accurately. You are trying to measure changes of less then 1% and your brain will fluctuate that much between morning and night and depending on factors like hydration. So while its surely possible there is some atrophy you cant rule out measurement error.

One thing I asked my wife to do with her MRI’s is make sure she schedules them all at the same time of day. Its also important to note that sometimes it will look like there is no atrophy when really there was some it was just when you measured it went the opposite way.

Given your two choices, based on what you said I would lean towards Ocrevus because there are very few reported side effects and its a very easy treatment relatively. However, its a personal choice. It might help to know how long you have had MS and which other DMT’s you were on and for how long. The reason is that if you were only on them for a very short time and you saw some break through activity, that might have been something that happened before you DMT was fully working. If you were on them for a long time and you saw some new lesions that might mean you only need something a bit stronger to keep everything at bay.


sciencegeek
5 months ago

@firefrau26 – get your neurologist to talk you through the data on brain atrophy for both drugs. If that is what you want to treat, you need to fully understand the potential for both drugs to alter the course of brain atrophy once it has already started.

Lemtrada is the best available drug for preventing brain atrophy, but that assumes that it was given before the brain atrophy had started. I do not know much about the data for Ocrevus, but as it has an effect on progressive MS it is likely to be altering the course of brain atrophy once it has already begun.

You neurologist should be able to clearly explain the benefits and risks of both drugs so that you can make an informed choice.


leighlincoln
5 months ago

Ocrevus

Had 1st half of 1st infusion of Ocrevus yesteday. No side effects that I’m aware of. Long day, started at 8 a.m. and finally left hospital at 5 p.m. Lady in next bed had a minor leg spasm and that’s all that happened as far as I’m aware.

Not that I wanted any side effects but was all geared up for them lol…

I was r/r/m/s for many years undiagnosed till 1999 then 3 years ago (approx) i was told I’m now s/p/m/s, I was surprised I was accepted for this DMT as understood only available for r./r/m/s.

It only became generally available in February this year (Australia) so I expect more and more people will be chosing this path.

Good luck in what ever you decide.

at


seanachai
5 months ago

tracyd
5 months ago

Side effects wise Lemtrada has nothing I regarded as ‘serious’ apart from the thyroid stats. Nothing else is higher than or even as high as the instance of occoursnce in general population.
Ocrevus however has significantly higher than instance in general population for heart problems and for that reason alone it’s on my ‘only if I have no choice in the matter’ category


leighlincoln
5 months ago

Forgot to mention that I have had a heart attack and a couple of t.i.a’s. Also have had 2 stents inserted.

I appreciate that we are all different and I love to read people’s opinions.

Good luck

Pat
p.s. Sun shining and Commonwealth Games started here in beautiful Queensland.


nutshell88
5 months ago

Exactly how I think i dont want to be sick when im not was daignosed 2005 I was a 17 yrs old girl finished uni age 22.
Although I’m Saudi Arabian I traveled to study in the uk age 24 without meds free till today got atrophy when I was in the uk 2014 but before that in 2011 i traveled to america to check and in the NYU hospital a prof said I’ll proba
Bly be bed bound in the end of 2011 if i never take tysapri he made me cry by saying that my life was ok
Years passes with no symptoms at all dispite the fact MS is making a mess in my brain
But its just anxiousness paranoid idk know i might be hurting myself badly im 30 now and not sure whats next but i go to work daily too


potter
5 months ago

One of my aunts died of brain shrinkage at the age of 50 but she had a more severe case of MS and live in a assisted living facility. I would research that a little more and if your brain has more than average shrinkage you may have to bite the bullet and get a agressive treatment. Potter


tracyd
5 months ago

@potter

Yes pwMS do have higher levels of brain atrophy (shrinkage) it happens because when lesions in the brain break down they leave a hole and the brain ‘shrinks’ to fill the gap 😔😔

It’s why not accumulating lesions is so very important regardless of physical symptoms / disability a person with MS may or may not experience

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