Forum

Medication

Hi Everyone

I saw my MS nurse today , we discussed DMD and what was on offer to me…

the choices are

Tecfidera

Avbagio

Ocrelus

Mavenclad

do nothing

I have had 2 relapses in 12 months

I have quite a active lifestyle ( running etc )

but my last relapse scared me ( Optical issues ) so I decided to consider whats onoffer

I know that they all have side effects

But I was wondering if there is anyone here on these, would be keen to hear your thoughts

Cheers

Ray

Hi. I can’t help with medication advice as I’m at the same stage as you. I’m also active and enjoy running. I’m waiting for an appointment with the nurse, so I’m very interested to hear what answers you get on this. Best wishes with making your decision. Xx

Hello Ray

Have a look at https://www.mstrust.org.uk/about-ms/ms-treatments/ms-decisions-aid

You’ve been given such a wide range of options its bewildering. They vary in their effectiveness, their benefits and risks. And those are the things you need to consider: the means of delivery of such a drug (injection, tablet, infusion and how frequent such would be taken). Then you weigh up the risks of side effects against the benefits (the potential relapse reduction rate).

Take your time, talk to your nurse, look at all the different drugs and talk to your family and friends about your options.

Best of luck.

Sue

My MS nurse was excellent - very helpful, and went into detail about all the options ( Wish she could move in with me ! )

As I said, my last relapse knocked me for 6 as it was double vision, vertigo and blurred vision…this stopped me form doing my day to day stuff ( I had steroids and was well enough to do the Edinburgh half marathon ) and go to Iceland ( The country , not the shop )

Blimey…I don’t have time for MS, too much to do !

I can put up with the pins and needles and the arm jumping - but this really affected me, so I decided to tke some drugs !

I know there are side effects ( Still waiting for the the that makes you a foot taller and makes your hair grow and win the lottery )

I think I will probably go for Ocrelus

All the best

Ray

oh I forgot…

I did have a go a Yoga too…(My yoga teacher also has MS )

Thanks for all of your comments and advice, means alot

Medications; quite bewildering! My consultant, last time I saw him, told me Rebif wasn’t doing the job any more (new lesions on the last MRI scan) and recommended trying Ocrelizumab (Ocrevus)… I’m taking it that is what you’ve been offered. (I do wish they’d learn to write properly!) Which I accepted. And my 3 times a week injections became a thing of the past, replaced by 6-monthly infusions. (I confess I don’t miss Injection Days one little bit!) The normal problem with me is shy veins (they hide)… but once they’d finally found one (they had to call in the senior nurse to do it) all went OK. Just take a good book to read while it’s all going on! And my Other Half tells me he thinks that the brain fog cleared a bit after the infusions. So good luck with whatever you choose.And don’t be scared - I was, but told myself that it’d have to be bad to be worse than what untreated MS can do, and I was in a hospital surrounded by medics and nurses who know what they’re doing!

Thanks Fracastorius

I do agree with your comment about the untreated MS - which is why I decided to take what was on offer.

I will let you know how it goes

Ray

Hi Ray,

Glad your MS Nurse has proved helpful. I have my appt next week to discuss DMD’s and my Neuro has recommended Ocrevus as 1st choice or maybe Tecfidera.

Tis not easy to decide!! Like you, I’m scared of untreated MS…having not been dignosed til 51 (although possibly benign RRMS for 20 odd years based on some old symptoms )

Fracastorius, how many infusions have you had on Ocrevus?? Glad you feeling OK on it, that’s good to hear.

I wish there was a treatment with no sign of any sinister side effects!!

I think if I were younger, I would probably try to address via diet etc before committing to DMD’s , but at my age I think I just need to bash it hard as my CNS is probably less likely to compensate/redirect than a younger person.

Ray, we may end up having our first infusions at almost the same time!! Let me know how you get on if you would be so kind??

All the best,

Minnie

Hi Minnie

Like I said my MS nurse is very good - although se did not want to make my mind up for me, se was quite excited about the Ocrevus, and the results it had given

I’m scared S***less - I have to admit, some of the possible side effects ( may not get them, or may be light )

I think we are quite similar, my first attack was neigh on over 20 years ago, and then nuffink! until last year, when I had one in June 2018 ( in-between half marathon training and pneumonia ) and May 2019

So , like you I’m in my 50’s ( 57 ) so will give the Drugs a bash - as no one knows why it’s suddenly remembered that its there !

Off course, I will let you know how I get on - the way I’m trying to think is that when if you were to read the side effects of Asprin - you would never take them…

other than the vision issues ( that remain ) I feel reasonably strong ( managed 10k yesterday and changed the bedding today !)

anyhoo

All the best

Ray

Thanks Ray. I’m just worried that the DMD’s will make me feel worse than the MS does! And of course we may never have another relapse anyway based on the fact that we seem to have had huge gaps between relapses!

So it’s weighing up all the pros and cons and balancing the risks I guess.

I’ll let you know if my MS Nurse comes up with anything interesting!

Minnie