I’ve seen the consultant today and it looks like they are keen to get long term users off DMTs. We can’t have them for life as being on them long term could affect our health as well. They don’t really know though and I reckon I am just being part of a “study” which I am not keen on. I’ve been given a year’s grace. She said 10% of people who have come off it have had relapses. I for one am not keen to take the chance but I might not have the option.
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Hi if I’m reading this correctly the 12 months grace gives you give you time to decide what to do. You can agree or challenge what you have been told by your consultant. Is there an opportunity for for a second opinion?
Most confusing and concerning! I’m going to look for any research and published work on long term use. As mentioned before when I last saw my MS Nurse and asked what happens if my MS is getting a bit worse without relapses she did that it is possible that you will get relapses so stay with the Avonex. I’ve been using it for around 18 years and will soon be 71 . I’m seeing her again in a few days and will ask again and let you know what she says similarly on any research about long term use.
I think I would be saying : well if you think there are long term risks then what are you going to do about monitoring my health?!!
P.S. I don’t think any medic can put anyone on a study without the patient’s consent !
And if any medic took me off a treatment knowing that there was a fair chance of getting relapses I would be writing letters muttering about suing them if as a result I became more disabled
The year is for me to get used to the idea that Avonex isn’t for life. I will ask for a second opinion when they take it off me which I am sure they will. It is strange that she is saying my M.S. is secondary when there was no change with my latest MRI. She is basing it on my energy levels and activity but I told her that was down to the fall I had in November plus arthritis that is playing up. I feel it’s just a box that has to be ticked so I will be getting in touch with my M.S. nurse to clarify that.
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