Forum

Change Of Treatment

Hi Everyone,

I was diagnosed in June/July 2017 with RRMS in the space of 3 months with having multiple relapses aswell as more findings in every scan. I have been on the plegridy injection for around a year and after having more scans done and several more relapses this year, my MS nurse and Neuro specialist have decided to change my medication as they feel it isn’t working (which I already knew with how much longer it was taking to recover, new symptoms etc).

My 3 options are : Manenclad, Gilenya & Tecfidera.

Can anyone give advice on what they feel was best? Helped with recovery of relapses/symptoms and what side affects occurred when taking the above?

Thank you,

Amber

Hello Amber

To be honest, it’s a really personal decision. It depends on what fits best with your lifestyle and what side effects you personally get from the drugs.

Have you done a comparison of the three drugs on https://www.mstrust.org.uk/about-ms/ms-treatments/ms-decisions-aid ?

It’s worth doing so you can compare potential side effects etc. Personally, I think Cladribine (Mavenclad) looks the most promising, but I’ve not taken it. I took Tecfidera for a few months but side effects made it impossible. The reason I think Cladribine looks good is that you only take two treatment courses of the drug, a year apart. That could mean you don’t suffer any more relapses thereafter.

The thing to take note of is that if you opt for one treatment and can’t continue due to side effects, you can swap to another drug, maybe even one from the ‘Highly Effective’ group.

I should have a look at all three drugs closely, perhaps do a search on here under each drug name to find out people’s experiences, then talk it over with your family and friends (ask someone you trust to look at the drug options too). Then make your decision.

Sue

Hi Sue,

Thank you for you’re reply!

I have been trying to weigh up my options and side effects that would be best for me but can’t reach a decision. I feel as though the Tecfidera has too many side effects that would really affect me as I work fulltime. From reading other posts on the forum about it, it really doesn’t sound like a nice drug to be on (not that any drug is nice)!

Can I ask where you can find other drugs that are on the Highly Effective Group? Just so that I can have a look at that.

None of these drugs sound like something I really want to take, I don’t know whether there’s anymore that my MS nurse could suggest as I have a funny feeling I’m not going to take kindly to either of the 3.

Myself, family and friends have all done some research on them and it really does just put me off taking any of them!

Thank you,

Amber

Hello Amber

If you click on the link I posted in my first message, you can see all the drugs that are currently licensed for RRMS. They are split into ‘moderately’, ‘more’ and ‘highly’ effective.

It sounds like your neuro and MS nurse have decided you should move from a moderately effective drug to a more effective one. And within that group there are only the three you’ve mentioned.

Many people do manage to take Tecfidera quite successfully. And without big changes to lifestyle or bad side effects. But I can completely understand not wanting to take something that initially at least can have some iffy side effects (stomach issues), and potentially more serious ones (low lymphocytes etc).

You could ask your nurse and/or neuro whether you could take one of the drugs from the ‘highly effective’ group, ie, Lemtrada, Tysabri or Ocrevus. It’s possible that you’d fit the criteria. But the potential for nasty side effects increases with the greater benefits offered. In particular, Lemtrada does have some pretty crappy long term side effects (like thyroid disease), but an excellent relapse reduction rate.

It really is a question of 1) what will your neurologist prescribe for you, and 2) what side effects are you prepared to risk.

So, in your situation, you need to see what options are open to you and research the drugs as well as you can. Start with the MS Trust Decision Aid tool, but you could also look at the forum on https://shift.ms/ as there are lots of people on that site who’ve taken the various DMD options and posted about their experience.

Best of luck with the decision. Don’t forget, whatever you opt for, in general if you find it doesn’t suit you, change to another drug is possible.

Sue

Hello Choosing a drug is not easy. My first drug and only drug so far over the last five years has been Tecfidera. I never ever had any side effects! Not once not even at the start. For me, it was the perfect match and I had been so worried to try it. So maybe you’d be lucky on Tecfidera too? All the best K.

Hello Amber

Been on Tecfidera for over 3 years without any side effects

Out of interest dug out booklet I was given 3 years ago ( I am a squirrel never throw anything away)

  1. flushing (becoming red in the face or or body)
  2. feeling ward or hot, burning or itchy
  3. loose stools (diarrhoea)
  4. feeling sick (nausea)
  5. stomach pain or cramps

My experience:

  1. never apart from when I go to sleep in the sun outside, without sun cream
  2. I only wish, I am always cold, wear a woolly hat all day
  3. I only wish, have constipation, even though eats loads of fruit and fibre
  4. never
  5. no stomach pain but have constipation

If I had been on the trial the results may have been different.

Had no relapses since taking but no recovery from previous relapses.

You cannot believe everything you read and as Sue says you can always change to some thing else but make your mind up and start taking one.

Just to confuse the issue I have been “offered” Ocrevus a month ago but still waiting final approval, will chase up neurologist next week

Bertie