Last reply 3 months ago
Looking for the wise approach

I am thinking about discontinuing use of Gilenya Fingolimod . I am unsure if it is effective anymore. I will get medical advice first however before treatment l had no abnormal protein levels in my blood and after blood protein levels were all over the place. I have read up on it and realise that the chance of getting increased disability from stopping the treatment is heightened however after having are relapse less than a month ago I am unsure of it’s effectiveness I realize Dmts don’t always stop every relapse however I do want to take the most sensible approach. I am not complaining just looking for a well informed opinion.

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3 months ago

I’m not sure how you have come to the conclusion that your treatment isn’t effective any more. Is your disability increasing or do you have new lesions? Is it a view that you have come to without hard evidence just a gut feeling?

I sometimes have had a period of ambiguity about continuing with fingolimod (in fact I’m going to push for a change) but mostly it has been about the fact that stopping could result in a big rebound and whether to stop sooner rather than wait. I want to transition off it with another DMT before getting the “good one” – Ocrevus.

Some anti DMT au natural its all a drug company conspiracy view might be that non work so why bother. It is true no DMT can cure or completely halt progression but some like fingolimod and highly effect treatments do a very good job for many of us.

3 months ago

Strictlysoca I am glad if Fingolimod is working for you and I am sorry if I bothered you I just had no sign of cancer just aggressive Ms before I went on Gilenya and I really just want to get to the bottom of what could be causing the high protein levels in my blood which they say is smouldering multiple myeloma and I am just trying to prevent myself if possible from getting multiple myeloma no matter what the cost and no I don’t want to blame the DMT so I am sorry if I gave you that opinion I have to go to oncology tomorrow and I am hoping for good news but not expecting it .And the worst of it is that it hasn’t even been 12 months since my diagnosis.Either way I do still hope that Gilenya still works well fo you and have a great day.

3 months ago

Hi Tim I hope that your difficult Decision about stopping DMT and risks of cancer are made simple by it not being mylenoma. I’d missed your mention of proteins by rushing about 🤨

Treatment plans especially having to make a decision when we are not experts and even the experts can’t be sure is one of our many challenges.

12 months after diagnosis we can only do a good attempt to make “best at the time” decisions as we really can’t know the future (even 8 years on for me it’s the same)

Hope you can get some nice things to do and relaxation today before your appointment tomorrow

Best wishes

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