Last reply 1 week ago
DMT HELP

Help! have to decide what DMT’s I’m going on next week and it seems like a minefield! Iv had 1 not so pleasant relapse and another barley noticeable relapse in the last 6 years. I’m not overly keen on injecting myself but my nurse said would probably be more like an Epps pen? I have GERD so anything that’s going to upset that is probably a no go! Any help would be really appreciated with any advice on side effects! P.s I have looked into taking an Iv drip once a year as my nurse said this will be available anyone got any experience in this?

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stumbler
1 week ago

@blagaman182 , it is a bit of a minefield, which is why it would be nice to be given a hand with the navigation. It needs to be a joint decision between you and your Neuro/MS Nurse.

The present thinking is to hit MS hard and fast, with the most effective treatments. The alternative is to start slowly and step up as you accumulate further MS damage.

The injectables are the original Disease Modifying Therapies (DMTs). They are regarded as first-line treatments and are the least effective.

The only annual infusion treatment is Lemtrada (five daily infusions in year 1 then 3 daily infusions in year 2). Although this DMT is not presently being offered.

Have a look at this “Decision Aid” and see if it helps :-

https://www.mstrust.org.uk/about-ms/ms-treatments/ms-decisions-aid


blagaman182
1 week ago

@stumbler thankyou! I have been told by my ms nurse that lemtrada is now being offered and is on the ms decisions website that you’ve kindly linked to which I have been on before to compare. I really wish there was more evidence to what is most effective.


stumbler
1 week ago

@blagaman182 , this is a couple of years old, so doesn’t mention Ocrevus or Mavenclad. But, it does go on to explain why there isn’t a definitive comparison:-

https://multiple-sclerosis-research.org/2016/09/comparing-dmt/

It may help…….


dominics
1 week ago

@blagaman182 – you say that you have to decide. What kind of advice/guidance has your treatment team given to you up to now?

The choices of treatment can be narrowed down in several ways.

– the effectiveness of the treatments in various forms of MS
– the type of MS you have – how aggressive, how disabling, the rate of onset of visible symptoms
– where you live – this should not be an issue in the UK (you don’t say where you are from) but sadly it is. The centres of excellence are familiar with using the range of treatments. Occasionally, the further away from these a hospital is then the more likely they are to operate with a narrower range of drugs.
– other risk factors in you like whether or not you are JCV positive
– your attitude to risk
– your aspirations and objectives; both immediate, medium and longer term.

The choice of the appropriate DMT for you and your MS is going to (or ought to) involve a combination of all of the above.

I take Ocrelizumab (my 4th DMT in 26y) and that is by 6 monthly infusions. What is good for me or anyone else may not be right for you.

Really lean on your care team to use their expertise and experience to narrow it down. The final choice is always yours but it is nice to think that you have been expertly guided towards the best option(s)?

Good luck.


blagaman182
1 week ago

Thanks for your reply’s currently Iv just had advice from my ms nurse, I’m going next Tuesday to see the specialist about it and unsure how long I have to make the decision as my ms nurse said they like to get on with it but surley I don’t have to make a decision there and then ?


stumbler
1 week ago

@blagaman182 , your body, your decision on DMT, your timescale.

It’s about you being comfortable, rather than stressed out.


blagaman182
1 week ago

Ahh maybe I got the wrong end of the stick she said I kind of meant to do my homework before I go but surley the specialists will give me more sound advice so then I can go away and think about it!?


stumbler
1 week ago

@blagaman182 , yes, you need to do some research, to identify which options would fit comfortably within your lifestyle. As well as the aspects detailed by @dominics earlier.

Then you can play an active part in the discussions. You’ll be able to ask them to justify their recommendations and weigh them up against your preferred option.

And, yes, they’ll give you time to reflect and make a final decision.


dominics
1 week ago

@blagaman – No Doc/Nurse will ever fall for the, “If you were me, what would you take?” question. It seems to be a point of pride to them?

One tactic for talking to them is to get them to order their suggestions in what they think is the best to worst option for you.

Then ask them to ‘help you understand’ why they have ordered it so. Take notes, or ask to record the conversation. They ought to have no problem with either.

The notes/recording will help you to replay the chat when the pressure is off and ask people some far more specific questions.

These days, It is becoming the norm (and already is in many places) to hit MS hard from the get-go. The idea is landing the knockdown blow early on makes a better long term outcome for you.

The theory needs to be balanced with the things I mentioned previously. Like @stumblwer says, it is your body and your choice.

Good luck.


dominics
1 week ago

@stumbler says … – fat fingers. Apols!

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