DMD advice for 2020

I want to ask a question that has been asked previously but looking through the threads and the chats about DMDs they are a bit old and I wondered if there’s any new advice/experiences. I was diagnosed yesterday and specialist has sent me away to look at DMDs before meeting up again to decide on treatment. I CANT DECIDE, I’ve tried the decision aid but my brain is still boggled. I am 40 with 3 kids (20,16 and 2), I have 1 active leision in my brain and quite a few inactive ones in brain and cervical spine, I currently have numbness/loss of sensation in left hand, neurologist suspects have had MS for 11 years after going over medical history. I understand everyone’s experiences will be different but I am scared at starting treatment and I would like some info from the more experienced people in this community. I have a fear of needles so I am drawn to Tecfidera BUT I don’t like the worry ing side effect of brain infection and compromising my liver and kidneys. My husband is annoyed with me because I said last night I don’t want to take any. I can’t stop getting upset.

Your neurologist is an expert in MS and in DMDs. He or she is also the nearest you have to an expert in your MS. I am a great believer in asking the neurologist what in his/her expert opinion is the DMD that offers you the best available balance of risks and benefits. I know that expertise is supposed to be out of fashion at the moment, but not when it comes to MS it isn’t! If your neurologist has not yet given you a clear steer, swing him/her by his/her ears until you get one. That’s what they’re paid for.

The final decision is yours, of course, but you are entitled to expert guidance. This is not your specialist area any more than it is mine

Alison

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JCG

Take Alison’s advice, I particularly like the implied violence by swinging the neuro by his ears!

Remember it is absolutely your decision but you can ask for your neuro’s expert opinion.

You have to be comfortable with your decision.

Have you got an MS nurse? They usually sit in on the choosing of DMDs appointment,

Take a trusted friend with you if you want to.

good luck and let us know how it went.

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Thank you for taking time to read/reply. I haven’t been assigned a MS nurse yet. I have read through all the DMD info and I think I have (reluctantly) narrowed it down to 2. I will get the nurse/Neuro’s opinion, I just wanted to form an opinion without persuasion first. Some of the experiences of the drugs I’ve read online sound worrying though. Hoping 2020 can’t get any worse!

Thank you alison100…I did actually feel like swinging the neurologist round by their ears when they told me. I just hope they won’t just throw any old drug at me. I’m really not looking forward to self injection but hopefully the nurse will give a good demonstration…seems silly because stabbing myself with a needle is probably less painful than current symptoms! One question about pain: do we get meds for pain management?, i was so preoccupied at appointment that I forgot to ask.

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Hi, I have to say, I’ve been taking Tecfidera for 2 years with no side effects at all. For most, side effects will be no more than flushing or an upset stomach, both of which usually settle. There are of course more serious but much rarer side effects. Have a read and educate yourself on the various options. Tecfidera is a good option the stats say so, if you really don’t fancy injections then Tec should be on your radar, but as others have said, ultimately it’s your decision. Good luck.

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Hi, I was diagnosed this year and started on DMDs in October. Like you my neurologist asked me to consider 3 DMDs to consider and during my first consultation after diagnosis he briefly talked me through the 3 DMDs and the side affects. One being Tecfidera, Avonex and one other that I can’t remember the name of . I did say during the consultation that I was swaying towards Avonex (side affects seemed less scary) and he did say that was the one he would have suggested but ultimately it was my decision and he told me to go away and do my research. I am aware that tecfidera is more effective but I opted for Avonex, the self injecting pen. You are trained on how to prepare the pen and practice until you are confident, my husband was also there for the training and following the half hour training session i was confident to use the pen.

I was quite surprised that they left it to you to select a DMD, however I am now 9 weeks in with no major side affects. I am due to get my bloods checks in January so hopefully these are fine and my next appointment with the neurologist is in March (approx 6 months from commencing meds).

Take care.

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http://ow.ly/vUOf50CLLvs
You may have already read this article on the MS Trust website but just thought I would share this.

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Thank you. That’s great you’ve found a DMD that works for you. Yes, I was initially drawn to Tecfidera as it’s a tablet, but I am scared/not liking the rare side effect of PML; I think everytime I took a headache I’d panic.

Thank you, it’s good to hear positive experiences. Unfortunately it seems easier to find the bad experiences online (I suppose folk are more inclined to leave negative feedback than good). The neurologist gave me a leaflet and highlighted the 6 DMDs I should look into/research and I think when I go back in the new year we discuss and agree on treatment. I’m happy that I’m having some input as it’s me that has to live with MS, but I agree that it’s quite a complex decision to make as I’m still coming to terms with the MS diagnosis and what that means for me and my family’s future.

Thank you. Yes I did read the article and it gave me hope. I like that it’s once a month in hospital. My neurologist is looking to start me on level 1 DMD and Tysabri is level 2 (for very active rrms). Although one of my questions when I go back is if I should be on a level 2 DMD as she believes I’ve had MS for 11 years… So confusing.