PART I: My journey has been a long one and while I'm not anything like my former self I do consider myself to be lucky where I'm at after close to 20 years with RRMS.
I'm still walking and talking (it's not always pretty but I get it done and most of the time without even a cane). I also still work and drive. I have been on several DMTs (Avonex, Rebif, and now Tysabri) and for me, Tysabri has been the best. No active or new lesions for the last 3 years, only wish I'd been able to start it sooner.
The first two were Interferon shots I gave myself at home and I felt terrible from the side effects. For me, it was like having the achy all-over feeling like when you have the flu. At the time, Avonex then later Rebif were partially covered by insurance whereas Tysabri when it was brand new was not covered at all because it was seen by big insurance as an 'experimental' therapy. At the time, I was not advised by my then neuro of any type of financial assistance from the pharmaceutical companies. Who knows, maybe it didn't exist back then? Which if you don't know is a game-changer.
Both Tysabri and Ocrevus have infused treatments, given by IV at a hospital or infusion clinic. Depending on where you live, this may be convenient or not so. I'd be sure to find out if you have a place near you that can do this otherwise, you'll have to travel for your treatment. I'm lucky that I live in a major metropolitan area so every 28 days I can drive 30 minutes to my neuro's office that has an on-site infusion clinic to get my Tysabri. I'm there with people who have to fly in from other places just to get their meds. So if you don't have a situation like mine, travel cost could be a major factor when evaluating the two. Tysabri is infused every 28 days, that's a lot of airfare if you can't drive for treatment. Ovrevus on the other hand is only infused in six-month intervals so you'd only have to fly in twice a year versus 12 times a year with Tysabri.
Since starting Tysabri, like I said no active or new lesions in 3 years, that's not to say the damage that happened before isn't a problem, it is but at least for now we've arrested the progression. Also, Tysabri (natalizumab) for me doesn't have ANY of the flu-like side effects so that for me has been huge.
I have not personally been on Ocrevus since Tysabri is working (knock on wood) but if it isn't then Ocrevus is my next step. Also if my JCV ever comes back positive (with Tysabri, you have to check this every few months with a simple blood test) - I'll be switched to Ocrevus to prevent PML (a very serious brain disease that can lead to death).
To be cont'd
I also take Dalfampridine (generic Ampyra) to help with walking, not sure how it works, but it has greatly improved my stride from a shuffle to more of a normal walk. My balance is still WAY off, but it does help with the walking part.
Additionally, I have muscle spasms/cramps/spasticity - I don't think it's related to the medication, I think it's just the MS so for that I take Baclofen several times a day to relax the constant tightness in my abdominal and back muscles. This works great but it has the side-effect of really amping up the fatigue feelings, MS on its own makes you feel tired all the time, but baclofen will make you fall asleep in the middle of a conversation. To combat this I now take Armodafinil and it has been wonderful, I take it in the morning and I can work and drive all day (traveling salesperson) then still have enough energy in the evening to talk to my wife and play with my son.
Last but not least, in addition to all of this my neuro suggested I try cannabis oil, for spasticity. Wow! if this is available in your state, I suggest giving it a try (mine is a prescribed medication, and no it doesn't make you high in the slightest way; if you told me 20 years ago that I'd be doing anything with marijuana I'd have said you were crazy) I use a 1:1 formulation of CBD and THC. .5ml in the morning and another .5ml at night under the tongue and swallow similar to regular CBD. Regular CBD helped with the day-to-day aches and pains of the disease but did nothing for the spasticity. Since starting this one with the THC added, the spasticity is all but gone. I had also been doing weekly physical therapy for the spasticity but that's no longer needed since I started this. One downside is that the cannabis oil it's not covered at all by insurance so it's another $100 a month cash-only, but I was paying $120 a week for physical therapy (with insurance) so I'm coming out ahead there.
I know this was a lot to read, but if you stuck with me to the end, I hope hearing my experience helps you regardless of where you are at with your journey.
Good luck and God Bless.
Well, Ocrevus is taken just twice a year but it's an infusion if that bothers either of you. Your husband needs to get a blood test to determine if he's JV positive prior to starting Tysabri. He won't be considered odd if he's positive as nearly half the people tested are positive but, if he is, taking Tysbabri is a bit more risky. Tysabri is also a shot, I think as since I was positive, it was not recommended I take it, if that's a deal breaker for you guys. The taking of Tysabri is also more frequent than twice a year. As you are new to MS, please know neither of these meds may be your MS DMT (disease modifying therapy it may also be called a DMD or disease modifying drug. These terms are interchangeable and took me some time to realize that). Ocervus is often thought to be the best MS drug but it may not react well with your husband and that's fine. There are at least 20 MS drugs/ treatments and he may need to try multiple drugs before finding his MS drug and that's not uncommon for those of us lucky enough to have been diagnosed with MS. Just know, he will need to start with a DMD and then potentially change from there.
I have been on ocreavus since 2019 and recently felt a huge change. Blood work showed the ocreavus wasnt working, my B cells were coming back too quickly. Which caused me to get more symptoms and feel terrible. I start tysabri on Friday. Ill let you know how that is!
Another thing to keep in mind is which type of MS he was diagnosed with. Ocrevus is the only FDA-approved drug to slow the decline in Primary Progressive MS. Other MS drugs can be given to those with PPMS, but O is the only specifically for that type. Other types of MS can use O, Tysabri, and other drugs. I have PPMS and have had no bad reactions to O in 3 years.
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