Last reply 6 months ago
"Mild Disease" & Med Switching

Long story short, I moved to a different state in October and had to find a new neurologist as a result. I LOVED my neuro in my home state and trusted her with my life (literally), so leaving her was a major bummer. My new neurologist all of a sudden wants to change my medication. For some background, I was diagnosed a year ago (today!) and was immediately put on Ocrevus at the suggestion of my home neuro. Since then I’ve had 2 infusions, the latest being in November, no side effects, and my December MRI showed shrinking of old lesions and no new ones.

Now in my view, that’s all the reason I need to keep doing what I’m doing. The new neuro however says because my ‘disease is mild’ and Ocrevus is ‘so potent’ he wants to change my medication to avoid side effects. He also said that there are studies/research to suggest that going for an aggressive treatment right off the bat more so treats ‘the anxiety about the disease than the actual disease’…seems questionable to me, but I’m not a neurologist.

I guess I’m perplexed because I haven’t had any issues whatsoever…and I don’t understand the logic behind changing if something is working and not causing problems? Maybe my disease is ‘mild’ BECAUSE I’m on Ocrevus? I’m also limited on my med choices due to being JC positive and I don’t feel super comfortable with taking the risk of getting off something that’s working to test out something else. Thoughts? Anyone had a similar experience?

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mlgilber1
6 months ago

I’d find a different neurologist… it’s working for you and you’ve had no side effects. Also, a lot of neurologists suggest hitting it hard fast. I’m also on Ocrevus and it’d stress me out if they wanted to switch me just because they thought my case was mild. Mine was considered aggressive and the neurologist suggested tysabri or gilenya to try first, but respected my decision. Will your neuro not let you continue? Are they suggesting and switch or making you?


esue
6 months ago

@mlgilber1 I would assume he’s making the suggestion but will let me continue if I so choose…my appointment to have that discussion is 2/18, I’ve only briefly talked to him over the phone so far. I’m definitely considering switching neurologists already, but obviously if he’s not respecting my decision i will DEFINITELY be switching. I just don’t get why I would switch – there doesn’t seem to be a good argument for doing so. Did your neuro bring up any major long-term side effects or concerns with Ocrevus? I’ve never been told any…


mlgilber1
6 months ago

@esue My neurologist never really talked about long term side effects just mentioned breast cancer because of the trials, but also stated that the risk wasn’t higher than the general population. He just said when I get a little older then he’d like me to get regular screening done for it, but I think I’ll get it done sooner.


sfrox
6 months ago

I wonder if there is another reason your doctor doesn’t want to manage that course of therapy – like a business reason. I can’t think of one, just wondering.

My first DMT which I started in august 2018 was Tysabri. One of the drugs he wanted me to look at was Ocrevus, but when push came to shove he said he prefers Tysabri because the risks are more clearly known at this point due to Ocrevus being relatively new. In a way that translated as “less work for him,” but I also talked to other patients in making the decision. Honestly though, I find Ocrevus super interesting. I would consider switching to it, especially if PML never is a factor. I think the cancer cases during the trial are normally occurring and my doctor said that too, but I’m not a scientist – that is only my opinion.

Wishing you the best with your treatment and everything.


stumbler
6 months ago

@esue, tell your Neuro that you respect his advice, but it’s your body and you are happy with your present treatment.


esue
6 months ago

@mlgilber1 okay that’s the only long-term concern I’d heard of too, with the same note that it really wasn’t higher than the general risk. My original prescribing neuro had me do some extra screening just in case and still decided Ocrevus was my best bet so who knows.

@sfrox he seemed convinced PML is a risk, but I have yet to find any studies of patients getting PML, aside from 1 that researchers believed actually got it from Tysabri before switching to Ocrevus. Not sure if that’s the risk he’s concerned about. I know getting Ocrevus through insurance as the first drug can be a challenge, but since I’m already past that hurdle I’m not familiar with the other aspects of the business side – that’s a good thing to consider that i hadn’t thought about. I guess I’ll find out the 18th.

@stumbler that’s absolutely the plan! Just wanted to see if other people might’ve had this experience and maybe I was missing some reasoning/potential logic behind it. Ultimately it’s not his call and if he thinks it is I will be finding a new neurologist!


smack
6 months ago

Ask your hero if he/she is an MS specialist. There are many neurological diseases. Do you trust your noold nuero’s decision on using Ocrevus? There is no cure for MS. Different drugs attack different things in brain. That’s why a drug that works well for one person may not work for another. If you are doing well on Ocrevus then I would stick to it. There are so many DMDs that it is a crapshoot. Go with the latest, there are more in pipeline. I had my first two doses of Ocrevus last month. We can only do one drug at a time so I am am sticking with it. Good Luck!!


esue
6 months ago

@smack Yes everyone I’ve seen is an MS specialist. I’m all for the Ocrevus decision which is why I’m confused as to why there would be reason to switch. I’m having ANOTHER brain MRI on Sunday despite having a great one in December, so if that one says no relapse again I’m going to put my foot down and inform my neuro I’ll be staying on Ocrevus. No reason to backtrack from the newest and greatest to something less effective.


smack
6 months ago

Your right. If it works stick with it.

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