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Feeling a Bit Lost...DMD Advice Please

Hello I’m feeling stuck and need help! Briefly; last year was told I had mild/benign ms. Within the year I’ve had 2 episodes (which didn’t seem severe enough to be called relapses) of pins & needles, and tremors which each lasted about 3 weeks. I had an annual review with a new neuro who also looked at new MRI results. He has suggested I start DMDs & has expressed a preference for tysabri. I feel a bit shocked as everything I’ve read about tysabri suggests it’s for highly active ms which hasn’t responded to other first line drugs. My MRI showed 3 lesions in my brain & he said 2 of them could correspond to the 2 episodes I had this year. But my first MRI (which he didn’t really look at) from last year showed 3 lesions. I’m very lucky as currently all my symptoms have been manageable & mainly sensory. I don’t get tired or have any pains so I was taken aback at the DMD recommendation. My neuro said he believes in hitting ms hard before it hits you. I wanted to ask if anyone else with ‘mild’ ms has experienced similar? The MS decision page is no longer available. I’ve been searching through past threads for advice on different DMDs and found compelling evidence for each drug & for those who take no medication. Does anyone have any suggestions as to how I can help myself make this decision please? I know it’s down to me but it’s a huge choice to make and I’d really appreciate any suggestions or advice from those who’ve gone through this already Thank you Jane xx

Hi jane I started Tysabri 4 months ago , as my neuro believes hit it hard before it hits me,lately there has been quite a bit of studies written by other neuros who believe the same. Good luck in your decision, I am really pleased to be on it. Take care Gray

Hi Jane

This is a really tough one and i don’t think anyone can make the decision for you.

I would think this is pretty unusual because the neuro’s usually want you on the first line treatments to start with.

At the beginning of my ms i would have been scared to be offered Tysabri but after 9 years of rebif and quite a bit of experience and gaining more and more knowledge over the years - i now think its all down to cost!!

They put you on the injectables to start with because its cheaper! They don’t put you on the ‘more effective drugs’ unless your ms is not stable or you cannot tolerate the injectables.

Your neuro does not necessarily think your ms is aggressive but he obviously thinks its active enough at the moment to give you tysabri to ‘hit it hard’ and stop it in its tracks before any more damage is done.

Try not to be scared because you have been offered this.

I know very little about tysabri but what i have learned is that it is a very effective drug.

If i was in this position i would be asking about Gilenya as well. I would have thought this tablet would also be a good option for you.

In my opinion - take the best possible drug that is offered to you but make sure you read up on the side effects so you can make an informed choice.

Sorry i cant help much but just wanted to share my thoughts as you don’t have many replies

Take care and good luck with your decision

Teresa.x

Hi Jane

You can compare the drugs available by looking at the What is MS? section on this website, then look at treatments and then Disease Modifying drugs. You can work your way through them and see what you feel would suit you.

I started on Rebif 5 years ago and it kept me relapse free for 3.5 years but I had 2 relapses last year both affecting my mobility so now I’m on Gilenya.

Good luck whatever you decide

Tracey x

Thank you for your replies. Gray I’m really glad tysabri is working for you. Teresa & Tracey thanks for the advice. I’m just starting to get my head round this & will research all info about the drugs. I’d not really heard of gilenya so I’ll make sure I get clued up Jane xx

There is so much to get your head around at first. When i was diagnosed there was less choice so in a way it was easier to make a decision.

Tysabri is given by infusion once a month in hospital.

Gilenya is taken as a tablet once a day. The first tablet to be taken in hospital and you are monitored as it can raise your heart rate. After that you take them yourself at home.

There are side effects to both these drugs. I have no experience of them but you could start a new thread asking for experiences of both drugs?

Just to confuse you even more (sorry!)…there is a new oral drug that should be available in the coming months called Tecfidera. This may be an option for you as well but i don’t think it will be available for a few months.

And to REALLY confuse you (sorry again) but Lemtrada has just been licenced as well. This will be available around September. Ive heard this is very expensive.

There is a criteria for each drug. You will be told which ones you meet the criteria for and the neuro will advise which he would recommend.

Research the drugs and ask any questions you have on here. People will be happy to share experiences.

Teresa.x

Teresa thank you for your detailed information. I’m sure others will find this as useful as I do Jane xx

Thanks may98. I think you’re right - there does seem to be a growing belief in treating ms aggressively but I suppose only time will tell if it has any merit… Jane xx

MS Decisions may not be available, but this one form the same stable is:

Geoff

May98 makes some very good points.

I agree it is very important to weigh up whether the side effects/risks are worth taking when your ms is mild.

All this needs to be discussed with your neuro. Ask him why he is leaning towards tysabri? Why not Gilenya? Why is he not starting on the injectables (is your mri showing too much activity?). You need to know his reasons for the tysabri so you can make an informed choice.

Would he think BG12 could be an option for you when its available?

You also need to think which will fit into your lifestyle as Tysabri is a monthly hospital visit. Gilenya has to be monitored at first but then tablets at home.

Lots to think about and lots of questions need asking before you make your choice.

T.x

Thanks Geoff and Teresa After following the link Geoff, I’ve ordered an MS booklet on DMDs & am working on writing down a list of questions which will help clarify things. I’ve really appreciated all the suggestions & help Jane xx

That’s a very interesing one. It is not unusual fo people to be put straight on Tysabri, by the way; sometimes the neuro looks at the history and the MRI and thinks that it is best for this person to reach for the big guns straight away. Who can say he is right or wrong? No one, it seems to me. It comes down to professional judgement, which is what we pay them for. Personally, my inclination has always been to accept the advice I am given unless I have a better idea. But I do believe, strongly, that the person with the best chance of doing well on any drug is the one who has been convinced by well-founded arguments that it is the best thing for him/her. I am on Tysabri now and had been for 3 years. But I was an old hand with MS by the time I started, and knew only too well what MS can do, and needed no convincing. If I was someone who was relatively unscathed by MS, I would have taken more convincing. Make sure that whatever treatment you decide on is done with you full sign-on and support. You don’t want to feel as if stuff is being done to you.

But…the unpleasant shock of hearing your MS suddenly being taken alarmingly seriously by the medics could potentially cloud how you are seeing thing at the moment, and that isn’t helpful. It is never nice to hear that they suddenly aren’t talking about ‘mild’ and ‘benign’ any more, and I am sorry that you have that to deal with. Of course you are a bit taken aback: who wouldn’t be? Try if you can to set that aside while considering the neurologist’s recommendation. These people - like the rest of us - aren’t perfect. But they do their best and they have our best interests at heart.

Alison