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DMDs - how and what to choose

Hi all,

I am so confused what to do and its such a big decision :slight_smile:

Just got letter from neurologist and it seems that I will be offered:-

a. Tecfidera (tablet)

b. Gilenya (tablet)

c. Beta Inferons / Glatimer Acetates Rebif etc) (injectables - ouch!)

I have read so much on these different drugs and I really just don’t know what will be best to go for. I want the best possible chance to slow down the disease with minimal side effects and minimal pain :slight_smile:

My mind is in state of constant flux:-

Injection pain / Side Effects - (which will I get/which can I tolerate) / Effectiveness of DMD / Long term risks / Risks of Serious Complications / Length of trials…

Effectiveness:-

Gilenya is most effective at 54 - 60%

Tecfidera is 48 to 53%

Injectables 33%

Possible Side Effects / Risks:-

Gilenya - headache, diarrhoea, back pain, cough, dizziness ,heart rate slow down / more chance to get illness,macular oedema

Tecfidera - headache, diarrhoea, flushing, sick, stomach pain / PML Death

Injectables - headaches, injection site reaction, flu like syptoms / No risks

Seems the best choice is Gilena on effectiveness but I dont know :slight_smile:

How do you decide? What are peoples opinions on the drugs offered and which maybe is best?

Thanks

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It’s too bad that the best option - not having MS in the first place - is never offered, is it? So what’s the next-best option?

In your shoes (and in mine!), I would want the most effective drug that my condition warranted. Simple as that. It’s only complicated if you let it be.

Good luck with your decision.

Alison

hi spluff

you are fortunate that your first DMD has tablets as an option.

i am 5 weeks into tecfidera and the side effects have eased off.

the regular blood tests will detect any possibility of PML before it becomes dangerous.

choose the one that won’t interfere too much with your daily routine.

carole x

I am definitely leaning more towards the tablets as I really dont fancy injections and also they are only 33% reduction…

Gilenya and Tecfidera seem to offer similar levels of relapse reduction but with different risks…

Things im scare of is Geilenya - imune system not as effective / eye disorder (ive had optice neuritis and dont want to get worse - i maybe wont even know if my left eye gets worse)

Tecfidera - PML death risk (can monitor for this) and feeling sick…

I think I am leaning more towards Tecfidera but my mind changes hourly…

Any more opinions would be great to hear what you think

spluff, go for tecfidera :slight_smile:

let me explain:

gilenya and tecfidera are preferred over all others, because frankly, who needs to get used to stabbing themselves on a regular basis? not to mention having to store all the injectible solutions and keeping your needle collection safe and your injection sites clean and free…

It is much nicer to simply pop a pill with your usual regime of vitamins no? so you have a choice of two or three now.

Gilenya seems to be pretty effective but for me, it came with certain considerations:

  • it is often prescribed as an alternative for when ‘all else fails’ aka. ‘a second line big gun’. this makes me think two things: it comes with certain risks that might compromise the benefits; it might be nice to keep it in reserve in case all else does indeed fail;
  • the first dose is taken in a doctor’s surgery so they can monitor you for cardiac problems!!! for me this is a big deal, what with my having a slightly dicky ticker and high blood pressure already.

Tecfidera is apparently not quite as effective as Gilenya, but the difference is so slight i figured it was barely with noting. But:

  • it comes with a shopping list of possible side effects (my experience however shows that this possibility is NOT guaranteed - i have suffered nothing)
  • it is new to market (but has been used since 1994 for psoriasis; has been available since 2013 in North America; and has been trialled clinically since 2011)

Nothing is risk free and the advice about ‘possible side effects and even death’ is due to the litigious age we live in.

Tecfidera can result in PML. This is an exaggeration. I can explain if you want me to.

Gilenya can result in liver disease and skin cancers. but these too are very VERY rare.

you need to make a decision and i would recommend that you make it sooner rather than later. some people, even within this forum, are not fortunate enough to have a choice or access to the marvellous pills and potions you have. feel privileged and then proud that you are actually doing something to battle against this nonsense called MS.

good luck!

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When thinking about risks, don’t forget the risk ‘elephant in the room’ - the risk of unmanaged RRMS causing serious and permanent damage to your central nervous system. The risks of the meds are low impact and/or low incidence. The risks of unchecked MS are high impact and high incidence.

Just get yourself on the most effective DMD you can get your hands on, spluff, and don’t sweat the small stuff.

Alison

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If I was offered treatment I would take the most effective, if that then proved to have side effects I couldn’t handle I’d switch to the next one down and so on.

Good luck with whatever you decide.

Jan x

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Spluff reading your comment is like reading my own thoughts. I don’t like having to choose which medication. When you see your GP with a problem they give you medication, simples.

I was on Tecfidera, it didn’t agree with me. Back to see my nurse next week, to go through my options. That could possibly mean giving Tec another go, so many people are praising it but its not for everyone. If it doesn’t suit you then you can change your mind.

Thanks all for the comments its helping me make my mind up :slight_smile:

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  1. Hi there, not done done this before (replied to a post) so hope this helps:-
  2. i am currently on a trial drug for secondary progressive MS of Gilena I have been taking this for 6 months now and only had minor problems to date.
  3. 1 my lymphocyte numbers are low, but my consultant is not too worried as this is what the drug is meant to do.
  4. 2 my liver enzymes have risen again the consultant is not too concerned, I have had and continue to have lot of tests on my lungs, eyes and ECGs checked and to date all is well. It is easy to take just need to keep tablets refridgerated. There wasn’t much option for me as I am now SP but so far all has been ok. It’s a big decision to make but it seems ok for me at the moment.

Good luck with whatever you decide

louise

I’m with Alison “I would want the most effective drug that my condition warranted. Simple as that. It’s only complicated if you let it be.” It’s all a balance between risks and benefits. I picked up from the Barts MS research blog and a major US MS treatment centre (from the head neurologists) that they would recommend Alemtuzamab, Gilenya, Tecfidera (DMF) in that order depending how active the MS was. I didn’t note sources but you can search for the Barts MS research blog. As you’ve been offered Gilenya that would seem the one to choose. There is also some evidence that Gilenya is neuroprotective (e.g. Multiple Sclerosis Research: Gilenya slows nerve death).

You have noted increased chance of PML as a side effect only of Tecfidera but it can happen with Gilenya too (Multiple Sclerosis Research: PML in MSer on Fingolimod - no report of prior immunosuppression or Natalizumab treatment). PML seems to happen because the white blood cells are too few to fight it off. Interferon can reduce white blood cell counts too but I don’t think there have been any cases of PML. Checking cell counts is a major reason for the blood tests. So keep them up.

There are comments from MSologists that the injectables may have had their day (now irrelevant because the more effective tablets. As an aside I was happy to switch from interferon to DMF - from injection to tablet - injection was taking up 1/2 an hour, all told, every other day. Side effects of DMF have been quite mild and I simplified my tablet taking regime (as Paolo posted in a separate thread) to after breakfast then not specially eating anything before taking DMF before I go to bed (but I wouldn’t take it feeling hungry/empty!)

On choosing the most efficacious available I go with Alison 05 Mar 2015 at 9:17 am. As the Barts blog puts it with MS “time is brain”. Holding a more efficacious medication in reserve may well just let the MS “smolder”.

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