Post 743 Ocrevus my reasoning 23 Jun 2021

[RoyceNewton]

Sisters and Brothers, G’day to all of “YOU”, today my temperature outside right now is below 30 degrees Celsius/84 Fahrenheit and it is a little cloudy. All of which is good. I was able to bring the recycle bins in for the people in my street. It was a good day to do it, so I did. My friend was sick so NO gym today, ahh well there is always Friday, bet he is okay for his golf tomorrow though.

To today's talk. My RRms (Relapsing-Remitting ms(RRms) logic, is that I want to slow disease progression and have the least relapses, which is damage, that I possibly can. This should be your goal AS WELL Less disease progression; the more I am able to have an unencumbered life. Yes, We still may suffer ms attacks, NOTHING stops the disease, but the less damage I acquire the better for “YOU” and me. With this being the goal, I recommend currently Ocrevus. I STRESS that I am NOT your doctor or a trained medical anything. This is MY OPINION. Take it for what it is worth, something or nothing, your choice. It will change when a more effective Disease-Modifying Therapy (DMT) becomes available.

I am ineligible for it because of my age (old) and the efficacy of my current medicine, Tecfidera. Let us also mention my dislike of needles, I did Interferon-beta 1b years ago and that is enough needles for this lifetime. “YOU” on the other hand may well want to consider it strongly. It is only two infusions a year I believe. This is bearable and there are additions that “YOU” can take to offset any reactions. The bit that YOU” will really have to be aware of is that it may work very well, and people may look at “YOU” strangely because “YOU” look so good. Worst of all “YOU” may overestimate what “YOU” are capable of. Be very aware of this, even as a 50+ year old man with 20+ years along my RRms journey I still overestimate my abilities sometimes. “YOU” are new BUT “YOU” may not look it but “YOU” are sick. This is not bad or anything to be scared of, it just is. No mistakes were made, no punishments are given, it just IS.

So, it may well be a juggling game. Pull your shoulders back and shake it off. This is your life, and live it your way. “YOU” are not here to meet anybody's expectations or make them feel better about how “YOU” should look and behave. This is your life, your journey, live it the best that “YOU” can. Achieve want “YOU” want to achieve, live by your choices, nobody else’s. This is your life to live, I might suggest live it the best that “YOU” possibly can given the cards that you were dealt.

Royce ( your ms writer and Brother)

This may be an unexpected life BUT with smart choices it can still be a happy life.

[Neworleanslady]

Great post

[Tazmanian]

I am 59 years young and I am on Ocrevus talk to your neurologist about it

[RoyceNewton in reply to Tazmanian]

nah, I do not like needles so I will cope with my less effective Tecfidera tablets, my choice

[Tazmanian in reply to RoyceNewton]

Good luck!

[RoyceNewton in reply to Tazmanian]

luck I think I have had my fair share of luck, maybe next life

[Boxofchocolates]

Yes! Still a happy life indeed.

“MS may be a part of who you are, but it does not define you.”

Quote from Momentum magazine that arrived in my mailbox today.

[Frances_B]

Royce - you are entitled to express your opinions, and you have included your usual disclaimer that your are not a doctor, but despite both of those things I still think it is unwise to write that "With this being the goal, I recommend currently Ocrevus". Yes, Ocrevus is one of the highly effective MS drugs, but it is NOT appropriate for everyone and decisions about choosing MS medications need to be made by each patient in consultation with their own neurologist - who knows the patient's history and any possible contraindications for using any particular MS drug.

The modes of operation of the various MS drugs vary and some people do not find Ocrevus best for them, but do better on one of the many others now available. Some people have done very well, and continue to do very well, on some of the older less effective meds. So, while I mostly agree with the experts (such as those at Barts - "hit hard, hit early") that more effective medications are a "good thing", and I sometimes question why a newly diagnosed person is initially being prescribed an older and less effective med, it is still a decision for the patient and their neuro to make.

multiple-sclerosis-research...

[RoyceNewton in reply to Frances_B]

I agree totally, thanks

[twooldcrows]

just love to read your posts , they say so much but not to the point of boring ...some wonderful great information for young and old if they take the time to read ....thank you ...

[kdali]

I think you made a good point of saying whatever medication the patient is willing to take is the best medication.