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Q about medication

Can those of you who have been diagnosed help me, please? My daughter was diagnosed last month, and I asked about medications. The neuro sid that as she isn’t showing any symptoms at the moment (apart from fatigue) she didn’t need any. The trouble is, the more I read, the less uncertain I am. It seems that this would be a GOOD time to medicate, in order to stave off future attacks. What do you all think?

Thank you!

V

The call for dmd’s is with the neuro providing the NICE criteria have been met Type in nice criteria in the search box on the main page and there is loads of info there http://www.mssociety.org.uk/sites/default/files/Documents/Essentials/Living%20with%20the%20effects%20of%20MS%20(MS%20Essentials%2028)%20ES28.0309%20-%20web.pdf This may help and there is on on dmd’s Mike

V- so sorry to hear about your daughter. And yes medication is the right way to go to reduce progression and relapses. I believe - could be wrong that in some countries you are put on disease modifying drugs dmds as soon as diagnosed. Here you have to have 2 significant relapses to be offered them. So in effect you need to get worse before you are helped to get better. I would like to be on the more effective tablets. But again I am not sick enough to qualify. Basta.d nice dictators. You can get meds for fatigue. Amatadine I believe. I have also just started super potency sublingual b12 6,000 mcg after super advice from the wonderful people on this site. I beleive it is helping with my energy levels. Hugs to you and your daughter Min xx

I think her neuro may have misunderstood your question? DMDs/DMTs (disease modifying drugs/treatments) aren’t given for symptoms, but to reduce the number of relapses, reduce the severity of relapses, delay disability, etc. If she has had at least two “clinically significant” relapses in the past two years then she is eligible for the injectable DMDs. (Stronger DMDs re reserved for more aggressive MS.)

These are the NICE criteria for DMDs (google “CG8 Full guidelines for multiple sclerosis” to get a full copy):

People with relapsing-remitting MS should be offered interferon beta (any type) or Copaxone provided that the following four
conditions are met:
• can walk 100 metres or more without assistance
• have had at least two clinically significant relapses in the past two years
• are aged 18 years or older
• do not have contraindications (see specific summary of product characteristics (SPC) for details).

The big problem with these is “clinically significant” - it’s seriously subjective.

Given her age, I would be pushing HARD to get her on something if I were you. Side effects are minimal versus the potential effects of relapses and they really do work.

Karen x

Agree with Karen on this one about pushing. It can be true “he who shouts loudest”. But do go with evidence neuros like that e.g you could quote country that prescribes on diagnosis. You could also ask " if it were your daughter would you be recommending dmds?" Mi n Xx!!! What happened there ? Where’s the up button for goodness sake!!!