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Help - which DMD, if any, might help the fatigue? has anyone tried Campath/Lemtrada ?

I have tried Avvonex and Rebif (I could not tollerate the injection regime and the flue like side effects. I then tried LDN for a while but found it hard to get and didn’t try it for long.

I have not taken any DMD since 2010 but recent relapses and MRI scan confirmed the MS is still highly active so I do now want to try something.

There are so many different drugs out there now. I was offered Tysabri but then I heard about Lemtrada or Campath.

My consultant seems so laid back about all the different drugs and basically said it is up to me which one I use, but he is ademant that I should be on one of them.

In a way I suppose I should be pleased that I have a choice but in another way I am concerned that no one can tell me which is the best or most affective.

My main symptom is the fatigue and I would like to know if anyone taking any of the drugs has found they helped to improve energy levels ?

Also has anyone tried Lamtrada/Campath ? I’m thinking of trying this one as I like the idea of only having to have infusions a few days a year & then I can hopefully forget about things the rest of the time and get on with living my life!

Any thoughts greatly appreciated … thanks

Janet

Hi Janet,

I’ll come clean from the start, and say I’m not a DMD user.

But I do know none of them target symptoms, so I don’t think hopes of that should be a major factor in your decision.

Obviously, if disease activity were reduced, you might hope that, over time, symptoms would not be as numerous or severe as they might have been otherwise, but that’s not quite the same as treating symptoms directly, and I don’t think you should expect too much in the way of an energy boost, as that’s not really what they’re about.

In general, the more powerful DMDs tend to be associated with some rare but more serious complications, so I would want to know what the possible complications are, of each one I’m considering,AND how common such problems are.

There are definitely statistics published, both of effectiveness, and frequency of adverse events. I’m afraid I don’t know these, just off the cuff, but I can’t see how you can make a proper, informed decision, without discussing them at all.

Could there be a reason your neuro only suggested Tysabri at first, and it’s that it’s the one he personally favours?

Don’t be afraid to ask. I think: “Which would you choose?” is a very fair question to put to a neuro. Different people have different attitudes to risk, so what he would go for isn’t necessarily the same one you would choose. BUT, at least you’d get some insight into what he thinks is the best balance between risks and benefits. I don’t think it’s right that he’s just saying it’s up to you.

That may be true of the traditional first line injectables, as they’re all much of a muchness, and there’s no evidence any is significantly more effective, or more risky. But that may be different when you start looking at the big guns. I think there starts to be more of a range in effectiveness and risk profile, so you need more detailed advice.

Tina

x

Hi Janet

As always, very good advice from Tina.

You could also compare the different DMDs by looking at the relevant sections on this website and on the MS Trust’s website.

On this website - go to What is MS - Treatments & Therapies - Disease Modifying Drugs (I did try to copy and paste a link but for some reason it’s not working)

On the MS Trust website - go to About MS - Symptoms and Treatments - then in the second column choose Disease modifying treatments. (again copy and paste not working)

There are a couple of drugs which can help with fatigue so it may be worth asking your neuro about trying one of those. It’s always worth a try.

Tracey x