Last reply 5 months ago
Asking your opinion

Hi all, I would appreciate your opinion on something:

I was diagnosed around 2 years ago and have been on Copaxone since then. Doing ok-ish except for some minor things, and fatigue. (Much better than how it started which made me unable to see for a while)

Well, I just got my latest MRI results back and.. : / I have one new lesion. I found out yesterday and felt so sad I cried the whole morning.

My neuro said that this is ‘normal’, and that I shouldn’t switch to a different medication. I told her that I would very much prefer to switch to something more effective, especially since we saw new evidence of activity on MRI, but she said that this is impossible. She told me I could only switch to another first-line treatment (interferons/pills) if I really insisted, which she doesn’t recommend because of the time window of them taking to start working.

She told me that if I had more than one new lesions (maybe 3) then we could discuss about switching, but it would probably be again to a first-line dmt.

I want to ask your opinion/experience with this. Is it normal?? The only thing that I kept telling to myself all this time is ‘it’s ok even if there is progression, at least you will have options’. And now it seems that I don’t really!

When I asked her in which scenario I would switch to something more effective she said ‘only if it gets too active. Maybe next year you again get one new lesion, and I would again not advise you to switch. I never guaranteed that there will be no progress on the medication. We know that they don’t actually stop the illness.’

I would appreciate any opinions/advice on this so much! I feel a bit lost and without any options : (

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5 months ago

@maipi I think you should seek a second opinion if you are not happy with your neuro’s position. I am not sure how the Dutch medical system works and if you are appointed a neurologist or it is a free choice on who treats you (like here in Australia), however there is no harm in switching neuro’s if you don’t think they are advising in your best interest.
Do you also need to “qualify” for the more effective treatments? as in do you need to reach a lesion count etc for the government to subsidize your treatment? That is the only reason why I would think this advice is valid.
With so many treatments available you would think switching when there is evidence of continued disease activity would be warranted… unless there are restrictions on the Dr to prescribe them.

5 months ago

Hi @cammo and thanks a lot for your reply.

The neuro said that the requirements for switching are at least one relapse + on lesion, or more than 2 lesions.

I am convinced I had a relapse the past year, with a very intense sensory symptom that no other specialist could explain (it was a very uncomfortable feeling/pressure in my throat not correlating to any anxiety or other variables that lasted for 8 months).

The neuro said that it could be a relapse, but because there is no evident lesion linked to it (my lesion is in an of my brain that is not linked to the throat), she said it probably isn’t one. I asked her whether symptomatic relapses are always linked to lesions in corresponding areas of the brain and she said yes. Is this true? Because I have been reading otherwise..

I can definitely ask for another opinion and that’s exactly what I am planning to do.. it’s not very easy here in the nl, but it should possible..

It just feels so wrong continuing with a medication that didn’t work, and switching to an interferon or so seems a bit counterintuitive.

I really don’t want to reach a point where things are irreversible : (

5 months ago

I have a similar situation… They found out at my last MRI that some spots are still active, but my neuro doesn’t want to switch medication, because I have no new symptoms and feeling the same. That was his explanation. He also said that it can take some months until Copaxone is effective. But you are taking it for two years, right?

5 months ago

Yes, that is what everybody is telling me… different neuros told me that you can always find the lesion in the brain for the symptom. Could the pressure in your throat be a side-effect?

5 months ago

Hi @miapi !
I think that choosing a DMT is not an easy process. There are some general guidelines, but often each neuro interprets them according to his/her philosophy. For this reason, I think that if you are not happy with your neuro’s decision, you should ask for another doctor’s opinion. It’s important to feel safe and your opinion always counts!
Wish you the best!

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