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disease modifying drugs

Hi I’m sorry if there are posts on this topic already but I’m really confused and worried! I have had 2 attcks in the last 2 years and had an mri scan,last Monday I went for those results and the consultant neurologist told me he is is 95 % sure it is ms that I have but he would like to do a lumber puncture and some kind of evoked eye test? He says this will confirm his diagnosis along with the abnormal mri scan.I have been in total shock but after reading about disease modifying drugs like avonex etc felt there was some hope for maybe slowing the progress down but after reading the bnf (I work in community pharmacy) I see that there is some sort of risk scheme? What I would like to know is that are these drugs readily available if criteria is met? O r will I be fobbed off with the lets not medicate at this stage routine? I’m 33 and have 2 children and I feel overwhelmed by everything I have read online etc I f anyone has any experiance I would be really grateful. Thanks :slight_smile:

Hi,

ALL patients meeting the criteria should be automatically eligible under the risk-sharing scheme.

However, a slight fly in the ointment is that you need two clinically significant attacks in two years, not just two attacks. And there is no definition of what “clinically significant” means.

Some consultants treat it as synonymous with “disabling”, so it would depend on the nature of your two attacks. If they were “sensory only” (caused altered sensations/loss of sensation, but no motor impairment), they might not be deemed significant enough.

Tina

The risk sharing scheme was basically a fudge to get DMDs for a better price in the UK (DMDs are currently about twice as expensive in the US than the UK). As Tina already said, everyone who meets the criteria should be offered a DMD so don’t worry about the risk sharing scheme - it doesn’t come into clinical decisions so shouldn’t affect your eligibility; the real issue is the “clinically significant” thing which is used by some PCTs to cut numbers (and costs).

The other issue is that not all neuros can prescribe DMDs, although they don’t all tell us that! So make sure you are seeing an MS specialist who can prescribe and, if you want to ensure that you are eligible for DMDs, it wouldn’t hurt to make sure that he/she fully understands how bad your previous attacks were (hint hint).

Different neuros have different opinions on whether or not to medicate early. The main thing that persuades me that it’s the right thing to do is that people with RRMS who go on DMDs early do much better than those who don’t. I’m not sure that everyone should be put on Tysabri irrespective of how bad their MS is, but I can’t see any decent reason why everyone newly diagnosed with RRMS isn’t put on (at least) an injectable DMD asap. But that’s a personal opinion and I know not everyone agrees.

Hth.

Karen x