MIA for many moons!!

[KrisFL]

Was on here a bunch in the years following my diagnosis in 2004. Then life got in the way and frankly I’ve always been pretty anti pharma. Went on Avonex for short period of time. Copaxone for maybe a year or two but predominantly relied on yearly MRI to check for progression.
I’ve been fortunate to only have one bad relapse that left me blind in the left eye (optic neuritis) but my biggest issue has always been fatigue. Now the weakness has really started to affect me. Very hard to get around, balance is bad and I’m constant tripping over air!
I don’t work anymore.
My new Dr wants me on meds. His concern is the spinal lesions I have. One area is causing a significant narrowing of the spinal cord. He suggested Ocrevus or Lemtada but I don’t want to jump to infusions. So he suggested Mavenclad. Doesn’t seem to be much talk about it on here.
sorry for the long post, looking forward to reacquainting with the MS family.

[Marco]

Hi there! It's always good to see a returning face to MSWORLD, but I wish the circumstances were better. I'm sorry that you have experienced mounting disability over time.

The drugs of yesteryear like Avonex and Copaxone are rather "weak" when compared to the other medications you mentioned. While the listed meds are more efficacious, they are extremely unlikely to repair any of the existing damage.

All three of the medications you listed have a strong chance of achieving No Evidence of Disease Activity (NEDA) which means "no relapse, no disability increase, and no MRI activity."

The method of administration does not directly equate to the relative strength of the medication. Cladribine may not be an infusion therapy, but it's a "stronger medication" than Ocrelizumab. Where Ocrevus attacks CD20 B-cells, Mavenclad attacks both B and T cells (just like Lemtrada).

Mavenclad and Lemtrada are cycled medications over the first two years, but require ongoing lab work for years afterwards. The possible side effect profiles of these two medications are somewhat daunting.

I'm surprised your doctor did not bring up Kesimpta. Kesimpta is a monthly injection that essentially does what Ocrevus does (depletes B-cells).

I'll try to answer any follow-up questions, but your neurologist should be your point person. You may also get a second opinion considering this is a major decision for you.

I wish you well...

[Seasha]

Hi KrisFL!

I really don't have any suggestions on what kind of med you might be considering, but want to wish you a welcome back greeting! Even though we are glad to hear from you, I'm sorry to hear of the progression you are recently experiencing.. I have experienced that too over the course of many years. Marco's suggestions are noteworthy and of course, it is entirely up to you and your doctor to which direction you take.

Good luck and let us know how its going.

[KoKo]

Hi Kris

Welcome back!

Good luck with your DMT search and the choice you make.

Hope to see more of your posts!

[pennstater]

Welcome back! Sorry you have experienced some progression. I no longer work either, but really feel that helped tremendously with fatigue and quality of life. I started Tysabri after progression on Avonex and Rebif, so I can't add a whole lot on the drugs you are discussing.

I do hope you are able to find a treatment that brings stability and is well tolerated. Look forward to updates and more posts!

[KrisFL]

Thank you for the responses! It’s beyond time for me to get reacquainted with the science behind my body/cells with MS instead of just being led by my Dr. It hurts my brain these days though!! Isn’t that crazy??!!

[RonPaulaD]

Hi Kris,
I’ve been on Ocrevus for about 5 years with minimal side effects. Obviously it’s hard to know if it has affected my MS, but I’m sticking with it for now. Walking is my primary concern and it definitely has deteriorated over the years, however not as quickly as I feared it would. I started using a rollator 4 years ago and still use one plus a wheelchair for longer distances. I think that Ocrevus has slowed my progression some.
Paula

[Mamabug]

Welcome back Kris. I, also, don't have medication suggestions. I did do meds for many years but went off in 2019 as I am now in some and they were no longer effective.

I might suggest getting rid of gluten and dairy from your diet, reducing processed sugar, avoiding GMO's and MSG and processed foods. Also exchanging your personal care products, cleaning products, etc for organic nontoxic products.

These lifestyle changes have changed the course of my disease from constant progression to stable.

Best wishes in your journey with MS.