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starting dmd and scared

Hello to all, bck again for any advice you may have.

Have been diagnosed 6 and half years and was initially offered dmd but decided to wait and see, silly I know but I really was doing well and if I have had relapses I was unaware of it. I have been very very fortunate and I know full well how bad ms can be as my sister and I cared for our mum who had progressive ms which was severe.

Lately I have been finding myself battling with myself as to ask about dmd or not. I have very good neuro who has always said the offer of dmd is there whenever I wished to begin and I feel that time has come.

I had another mri in December which showed three new lesions which my neuro said was a subtle change in 6 years so I have thought long and hard and feel tecdifera seems a possible option but I am really wary/scared about the tablets. Also thinking should I just leave alone as dong ok but at the same time there has been some new activity.

Any thoughts/advice would be greatly appreciated.

Thanks again

Mary xx

ECHO Echo echo… :slight_smile:

I know its my big shrek fingers xxx

hammer hands for the win!

When I was told I qualified for a DMD I put off the decision for six months.

I had three relapses in that time - and only one four months after I started injecting.

Guess that the indecision has cost me plenty.

Geoff

I am the worlds worst on this laptop.Hope you keeping well . x

Thanks Geoff, it really helps getting others opinions x

I went on DMDs as soon as they were available on the NHS. My only regret was that I couldn’t start them sooner.

Why wait? MS Isn’t going to go away. It’s progressive and chronic.

Good luck with whatever you decide.

1 Like

Hi

Feeling scared is understandable. Partly there’s the side effects, and also partly there’s the fact that starting DMDs makes the MS more ‘real’ somehow.

Personally, I wish I’d started on them sooner. The MS was quite aggressive with me at first, and much calmer since I started on the drugs. The positive effects definitely outweigh any side effects.

Something that’s worth bearing in mind is that we’re all different, and we all react differently to medication. One DMD may be great for one person, but be rubbish for another. But, you can always swap, If you find that you’re not getting on with one for whatever reason, then talk to your neuro & ask to try something else. I started on Betaferon, but it did nothing for me, so I swapped to Rebif, which was brilliant.

Good luck with it though, and I hope you find the right one for you.

Dan

Dear Marydan

Good luck with your decision. Not easy to decide on whether to have a dmd or not. I decided to have dmd, dx officially June 14, unfortunately Rebif did not work out for me, I was on that for nearly a year, but had various problems such as sleeplessness, skin changes and bad injection site reactions. I have recently started on Tecfidera, now starting my third week. It is different for every one, lots of people don’t seem to experience side effects, I experienced severe flushing 2 hrs after taking the first tablet, the third day I had nausea and vomiting pretty much all day, at this point I felt very disappointed and thought this is not for me! I decided to try again the following day and I was fine, so I am pleased I didn’t give up! I think if you can get through the first 6 weeks the side effects (if you get any) are meant to improve. For me personally I wanted to feel I was doing something to help risk of relapse and long term disability prognosis. It is a very personal decision, unfortunately all the dmd have the risks of side effects, you just need to weight up benefit and risk. wishing you all the very best for the future.

Sarah x

Hi snap !!!

i was diagnosed in April and have been offered tec , I keep putting it off. It have frontally decided to give it a go and Start in August after blood tests etc.

A relative made up my mind , she is a nurse and said be careful NICE don’t pull the funding as its so expensive.

As I have only had this hideous disease for 3 months I haven’t got a clue what ms is, never sure what the symptoms are but I just feel crap most of the time.

good luck lets do it together !!!

Linda.

Dear all my friends, firstly can I sincerely apologise for not replying sooner but I have just come back on the forum. I dip in and out at different times.

Thank you to eac and everyone of you for answering my last post as all your advice is truly invaluable.

Having met with ms nurse to discuss the dmd, we have come to the mutual decision that we will wait until my next neurologist appointment to make the final decision. The reason for this is because if there is another lesion this time they will know the ms has been active and act then. Again I am truly grateful for all your kind words . Hope ou all are well.

Lots Of Love and Hugs xxx Mary

Hiya marydan, just seen this thread, feel i could be in a similar position to you actually! I was dx 9 years ago (following 2 bouts of optic neuritis) and never was offered any dmds, whenever i spoke to my ms nurse when i felt i was having relapses she always felt that they werent. I felt differently. However this last 5 weeks i have been very unwell, she is coming round today so i am making notes so I dont forget what to say! I want another MRI as I only ever have had one 9 years ago, and following that I , like you, want to take action.

So, I realise this answer is not actually of any help to you! But i related to it, thats all, so wishing you all the best with whatever course you take, and hope no yukky lesions show themselves!!

Sophiex

Hi Linda, sorry you have just been diagnosed, it does take a while to get your head round it doesnt it, is it a case of “relapsing and remitting, but where are the remissions as you feel rubbish most of the time???!!”- I remember saying words to that effect when i got diagnosed!! Anyway just wanted to say hi and hope you get some treatment sorted soon

take care

sophie x

Hi sophie. I really hope u get another mri really soon and things become clearer for u to make a decision.

I am very very fortunate I know with things being not so bad on the ms front and want to make the correct choice.

Hopefully things will work out okay for us both and until then keep smiling with a lot of prayers and luck to do our best.

Stay in touch and keep well Mary xx

Hello Mary,

Been dx 12 years with r.r.m.s just started on techfidera this March, after 2 relapses. Would strongly advise you to start some dmt, as I was very much like yourself, had relapses, but shrugged them off etc. If I could jump back 6 years and start them I would, it slows down relapses upto 50% and this has to be the main aim of any person, it will help longterm, tablets are better than injections too.

A lot of MS activity isn’t really noticeable but leads to MSers to lose brain cells much faster than normal ageing. I started DMT as soon as they were recommended.

With the evidence that’s been building up (that has lead British neuros to be more proactive than they were) I think I should have been pushy about starting DMT.

I’m on Tecfidera and didn’t find that scary. A little stomach cramps was the worst and that seems typical.

Best wishes.

Approx 14 years ago - optic neuritis and feeling unusual prompted me to go to Dr and then was sent to eye casualty, then moved to neurology where MS was diagnosed as the most probable reason for my problems and was confirmed by an MRI scan (haven’t had one since) I was given the opportunity of copaxone and was on it until this year and switched to tecfidera, Had a bit of nausea and flushing but nothing major, my point is that I am still fairly stable and maybe I’m wrong, but DMD’s have kept me like this but it is down to personal choice and i am not a neurologist.

Good luck with whatever your or anyone’s choice is.

Thank you Mary xx

Thank you to each and everyone of you for the kind replies,it really helps when all you kind friends give your own valuable advice.

Mary xxx