Start medication?

[Linsers1]

Hello. I am looking for advise on if I should start medication or wait. In late January my leg started to feel "different" and i had a weird feeling around my ribcage. My doctor suggested i get a MRI on my spine. It showed I had 1 lesion.

After finding that we did a MRI on my cervical spine & my brain which came back normal. 3 months later I had a repeat spinal MRI and my lesion looks better and there are no new lesions. I also have had a repeat Brain MRI which also shows no lesions.

My problem is I had 6 o bands when they did my spinal tap and none in my serum. My neurologist says I have a 80% chance of "developing" MS. He is giving me the option to start ocrevus.
I am worried about the side effects of the medication. I also don't really have any symptoms of MS other than my leg still feels off.

Also how often is too often to get a MRI? I had my initial one Jan 31, then one a couple of days later I had the one on my cervical spine & brain. 3 months later I had the repeat on my spine and at 6 months I had the one of my brain. I have already had 4 this year and they want to do more in October and all of these have been with glandlium. I am worried about the side effects from that as well.

Thank you in advance to anyone that responds!


** Moderator's note - Post broken into paragraphs for easier reading. Many people with MS have visual difficulties that prevent them from reading large blocks of print. **

[gargantua]

Hello. I am looking for advise on if I should start medication or wait. In late January my leg started to feel "different" and i had a weird feeling around my ribcage. My doctor suggested i get a MRI on my spine. It showed I had 1 lesion.

After finding that we did a MRI on my cervical spine & my brain which came back normal. 3 months later I had a repeat spinal MRI and my lesion looks better and there are no new lesions. I also have had a repeat Brain MRI which also shows no lesions.

My problem is I had 6 o bands when they did my spinal tap and none in my serum. My neurologist says I have a 80% chance of "developing" MS. He is giving me the option to start ocrevus.
I am worried about the side effects of the medication. I also don't really have any symptoms of MS other than my leg still feels off.

You are faced with a difficult decision. You have evidence of demyelination and accompanying symptoms. But deciding to go on treatment is hard since one of your recent tests seemed to show things getting better.

You have been doing a good job of staying on top of things and communicating directly with your neurologist. That is the most important thing. If you do decide to not go on treatment right away, negotiate your plan with your neurologist immediately for how you are going to monitor your health, and stick to it.

I have vision damage partly because of avoiding neurologists for 10 years when I was told to visit annually. But I felt fine. The problem is, there can be disease activity in your CNS while you have no symptoms or visible lesions. And even if you are doing great overall, MS can accelerate with age. In my personal experience, special diets and healthy lifestyle can help to mask or control symptoms and perhaps slow disease progression, but MS is part of life if you have it, and as such will likely rear its head again. What are you willing to give up? Now there are things that might be able to prevent the worst of that.

I went on treatment last month having found inspiration here at MSworld as well as inspiration in this post:
https://activemsers.blogspot.com/201...arguments.html

[Boudreaux]

My choice would be to wait. I'm not a doctor, follow my lead with caution, what has been good for me may not be good for anyone else, your mileage may vary.

[Linsers1]

Gargantua,
Thank you for the response! I love that article! It definitely helps to point out the benefits of medication. What medication are you taking? I am also nervous because I feel like I am starting on the most aggressive therapy there is, rather than working my way up. I would hope my experience with the medication wouldn't be a negative one. The unknown either way is scary.

Boudreaux,
Thank you for your response as well! I understand this is your opinion, and I appreciate your advice! If you dont mind me asking, do you take medication, if so what medication do you take?

[gargantua]

Gargantua,
Thank you for the response! I love that article! It definitely helps to point out the benefits of medication. What medication are you taking? I am also nervous because I feel like I am starting on the most aggressive therapy there is, rather than working my way up. I would hope my experience with the medication wouldn't be a negative one. The unknown either way is scary.

Boudreaux,
Thank you for your response as well! I understand this is your opinion, and I appreciate your advice! If you dont mind me asking, do you take medication, if so what medication do you take?

Linsers,

FWIW I am taking Tysabri as my first DMT. When my neuro initially gave me a list of DMTs to research, I eliminated Tysabri and Ocrevus immediately. They sounded too aggressive and dangerous. His top choice was Copaxone. But then, after aligning my recent spinal MRI with other (body) symptoms from the distant past, he focused on Tysabri. I believe he preferred it over Ocrevus since he is so familiar with it. His clinic can manage associated protocols, and I'm a good candidate (there's a lot about eligibility and risks in the Tysabri forum!).

Our goal is to stop the progress of MS in our bodies effectively, until a cure is found. I finally let go, when I realized the process of doing that is ongoing. I know there's a chance that even without DMT, an MRI in 6 or 8 months could look better. But I can't lose any more of my vision in order to find that out. I will keep eating and living well. I will keep asking questions. I will stick with the protocols I'd use to cure myself AND invite help from medical science. If things look better in 6 to 8 months I will ask the neurologist what my alternatives are, and I won't stop asking. As you said, the possibility of a reaction or side effects is scary, but that isn't happening right now. Right now, it's just a relief to be doing something to actively fight it, and to have a plan.

Cheers and all the best, G

[msgijo]

... FWIW I am taking Tysabri as my first DMT...
... If things look better in 6 to 8 months I will ask the neurologist what my alternatives are, and I won't stop asking. As you said, the possibility of a reaction or side effects is scary, but that isn't happening right now...

gargantua - have you heard about dose extension? Instead of infusions every month you can safely go to every 5,6 and even higher weeks between infusions. The risk of PML gets lower if you space the infusions out.

My doctor wants me on something but isn't willing to put me on Tysabri - says that it is too heavy a hitter for me? But I am kinda okay with it. There are no 'side effects' if you aren't taking any meds .

[gargantua]

gargantua - have you heard about dose extension? Instead of infusions every month you can safely go to every 5,6 and even higher weeks between infusions. The risk of PML gets lower if you space the infusions out.

My doctor wants me on something but isn't willing to put me on Tysabri - says that it is too heavy a hitter for me? But I am kinda okay with it. There are no 'side effects' if you aren't taking any meds .

Since you're armed with knowledge about both Ocrevus and Tysabri, I'd ask the doctor to outline his case for/against both, clearly. He said you have an 80% chance of developing MS, but he wants to prescribe a drug approved a year ago that is approved for PPMS. That's pretty strong too! This next statement is way beyond my pay grade, but given that "80% chance" estimate, maybe he does feel Ocrevus is a safer thing to put you on "right now."

Regarding side effects being a deterrent, with any new med I read up on how to avoid them. For example, with IV steroids, high sodium foods definitely exacerbate the bloating side effects. WIth antibiotics, taking them with a pro-biotic can help people who have stomach trouble. With Tysabri, everyone said to drink a lot of water (and of course to stay on top of those JCV screenings!). Extended dosing is something I hope to get my doctor to commit to a plan for, in my upcoming in-person clinic visit in Oct. Thanks for mentioning it.

I'm (we're) interested in hearing about what you and your doctor decide!

[gargantua]

gargantua - have you heard about dose extension? Instead of infusions every month you can safely go to every 5,6 and even higher weeks between infusions. The risk of PML gets lower if you space the infusions out.

My doctor wants me on something but isn't willing to put me on Tysabri - says that it is too heavy a hitter for me? But I am kinda okay with it. There are no 'side effects' if you aren't taking any meds .

Whoa, sorry msgijo, I accidentally bunched the OP into your question! Please take a peek at my previous post for comments about side effects. But in general I would say the same thing - ask your doctor why they think Tysabri is too heavy. It's now being approved for new RRMS patients. Based on everything you've learned about the risks and side effects and protocols to follow while on it, you may be able to bring information to your doctor that they hadn't considered.

In my experience so far, getting on and being on Tysabri requires focus and planning. You have to plan around infusion dates, you have to work with your doctor, your insurance, and the drug company when any changes are made, and it can be like a part time job until you get into the flow. Then it has to be approved again in six months. But side effects have not happened for me so far.

[Mamabug]

My advice would be to start treatment. It has been shown to reduce fx and severity of flares and to delay the progression of MS. Once the flares have occured, the lesions are already there. In your future, it is the existence of those old lesions that will act up if you progress to SPMS. The damage will continue to occur in those old, existing lesions, and your progression will worsen more quickly than if you had started now, to prevent some of those lesions.

I also recommend a healthy diet. My current functional medicine doctor believes that wheat (gluten) and dairy are huge contributors to MS. And aspartame. Although I'm still not sure how much credence I give to these, I do wish that I had cut down or cut out these products years ago. My present and my future might be different if I had.

Regarding your question about fx of MRI's:
Have you been diagnosed? I had many MRI's (seven) during my initial two years of limbo, in attempts to diagnose me. Since then, I have one once every 5 years.