Last reply 2 weeks ago
Changing medication

Hello everyone, wanted to start a conversation with people that’s going through similar experience and how they’ve delt with their own circumstances or advice.

I have RRMS and I’ve been going through a lot of change in the last few months. I was taking Gilenya for years but my white blood cells kept dropping too low, so you know how the neurologist recommends taking breaks and seeing if there is an improvement. Maybe half a year or more of this occurring every now and contantly dropping after taking the meds again. This has lead me to need to change medication, to the potentially scary Tysabri. Unwilling at the start, it was my only option and talking more in-depth with the doctor made me feel more at ease.

In the last 3 months, there has been complications in having the new drug. I’ve had to quit my job knowing I wouldn’t be able to go back into that line of work around a month of being off the drug. I’ve become sick multiple times in a row from fevers, colds, viruses since then. I’m not sure why I become so sick after coming off a drug that has been making my immune system so low? I had weeks that I was hardly able to stand from not having the balance, being shaky, fatigued, not being able to think coherently and struggling to express myself. A big change from being able to push through fatigue to do things on a daily basis.

Recently I’ve come to understand how low I have felt and continuously having the internal battle of I should rest vs I should do something. Along these months I decided that there’s no grantee I will physically be able to continue going to or carrying out the work I needed to complete the steps I needed for the career I wanted.

Now, feeling a bit more like myself, I am working towards becoming a freelance writer, being able to work from anywhere and be flexible in the breaks I need for my health. Appreciating the family support I have and my improvement of health, I am trying to not take anything for granted and plan for an unpredictable future.

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rogersouthall
2 weeks ago

shannon, I had the same issue but a different drug and for over a year I have been drug free but now I believe the time is right for something, I have MRI and CT scan this Sunday, yes a Sunday, and we will see
http://www.wholesorts.com I cover in depth, start at the beginning, you may find it helpful, feel free to share and there is also contact details listed, good luck


stumbler
2 weeks ago

@shannon_ohara , we evolve through our lives. Change of property, change of car, change of job, etc., so changing medications is just another part of our evolution.

Having a plan for the future, which is flexible to change is a good strategy.


itsmewithms
2 weeks ago

@rogersouthall in my recent forays around “the web” there is a common refrain – Ocrevus . That is what I was just switch to…second half of the first dose tomorrow. Please keep us updated- wishing you the best-

Shannon- it sounds like you had a scary bout with Tysabri. I never took that but knew someone who did and last I knew had been doing well on it for years. MS, and it’s treatments, are certainly a personal thing and what works best for one does not work best for others.

Aaron Boster’s Utube videos cover many topics and having that discussion with your Neuro on changing DMTs and when is the right time to consider a change is one of them I thought was good. He also has videos on most of the various DMTs I believe and yet another comparing them. Check out his “old school and new school” video that talks about his preferred approach to treat MS aggressively ASAP to limit any progression and not accept any progression https://www.youtube.com/watch?v=DAINEkp6LJU

Here is a list organized one way to look at options-
https://multiplesclerosis.net/treatment/comparison-reviews-of-drug-efficacy-safety/

One thing we considered when choosing a new DMT was looking for one that didn’t just have a different name but worked in a different way so changing from Rebif to Ocrevus would be changing my tactic. Apparently Tysabri Tysabri “binds to immune cells in the blood stream, preventing them from passing from the blood into the central nervous system where they can damage nerves.” So another drug that tried to do something similar may not be what you are looking for while a different approach may. I’d see if your Neuro can explain why they Tysabri wasn’t working so there is enough of a change that the new option will work.

There are two schools of thought – old school and new school…what school are you comfortable in and what to attend? http://www.pharmexec.com/use-high-efficacy-therapies-ms


shannon_ohara
2 weeks ago

Thank you all for sharing your experiences and the advice you have given. I’m not sure which school of drug I’m comfortable in but I will look into that and the other information suggested.

To clarify I was on gelenya that cause my to keep white blood cells to drop below the threshold many times. Tsyabri is the only option due to the drops in my levels the neruo states I can have, although he said new drugs are always coming out. Recently found out will be going onto tyasbri in a week after 3 months of issues before being allowed to take it.


londonlad
2 weeks ago

@shannon_ohara

Tysabri is a very effective medication and I have been lucky to be very stable on this for a good few years. I understand there are scary aspects to it, but the risks are very well understood and therefore can be assessed and managed.

are you aware of your JC virus status, as if you are negative, then you can be very relaxed as there is very low risk in that case.

I am still on the medication and have recently turned JC+, yet my risks are very low still (this is understood due to monitoring etc).
I will reconsider my choices once the risk profile changes but for now, don’t want to stop taking this amazing medication.

I wish you the best with the new phase of your journey.

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