Last reply 3 weeks ago
DMDs – my options

Hi All

I was diagnosed in September and I will be seeing the neurologist next week to discuss DMDs. I’ve been given some options to look at and I feel a bit lost at all the options. Does anyone have any experience they can offer with the drugs they’ve tried?

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grandma
4 weeks ago

Hi @georniney -it’s DMT’s Disease Modifying Therapies, having got that out of the way, I’m on Tecfidera, but you will find, albeit anecdotal, info on all the drugs in use in the left hand corner with the magnifying glass and you will find the info on the drugs by name. Don’t know what you’ve been offered, was on Avonex (Beta-Inferon) for 23 yrs but when things started to get really bad 18 mths ago and was changed to Tecfidera which has been great. Good luck with your search😍


vixen
4 weeks ago

Hello @georginey, yes it’s all a bit overwhelming at first. The MS Society have a good explanation of the available treatments. Essentially, the come via infusion, injection or tablet. All of them will have been posted about on here if you use the search button.

Your neuro could start by ruling out a few that might not be the best option. I chose Tecfidera as it best suited by lifestyle. I am working full time and it’s hard for me to take time off, so that works well for me. But some folks find remembering to take two tablets a day is stressful and so opt for other DMTs. Nowadays, we are spoilt for choice, believe it or not. A few decades ago there was nothing. Zero. Times are changing for us…….Good luck with your decision-making x PS, not everyone decides to go the DMT route and there are lots of posts about that too


lightning87
4 weeks ago

I am on Tecfidera and very, very lucky I had no side effects. I’m glad I chose Tec but obviously it could be trial and error. I would research all as best you can and listen to your gut.

Unfortunately the neurologists or MS nurses can’t decide for us – wish they would!!


octavia
4 weeks ago

@georginey Hi, I was diagnosed in October and I’m trying to decide on a DMT too. I have an appointment in Nov with an MS nurse to discuss it and at the moment I’m thinking clabridine after reading all the stuff ( I’m being offered lemtrada, clabridine, fingolimod, ocrelizumab and tecfidera) . It is really hard to decide what to do as my symptoms are not that bad ( bit of weakness in left leg) and some of the side effects seem worse. I am afraid that if I leave it and don’t take a DMT the MS will deteriorate but of course no one knows so it’s all a bit scary. Getting diagnosed is a bit of a rollercoaster emotionally I ‘m alternating between feeling ok about it to being a crying mess. I think the hardest pat is the uncertainty of it all. I’ve also cut out dairy and meat and am taking supplements x


stumbler
4 weeks ago

cammo
3 weeks ago

Hi @georginey,
I am on Gilenya and it is working for my MS.
Some things to be aware of (about Gilenya) is that there is a pretty common side effect of raised LFTs. Which I have.
In most people in normalizes after a few months… in some people (like me) it doesn’t.

It also has a high chance of rebound relapses if you decide to discontinue the drug. So if you do have high LFTs the neuros prefer to keep you on the drug and just monitor your liver instead of switching to another DMD as the likelihood of relapse is higher compared to the statistical evidence of liver damage.

It is good that you are investigating the options. I was just given a bunch of marketing pamphlets and told to choose one. I just chose the one that didn’t involve injections. Probably pretty stupid but I am stuck with my choice now.


fxms
3 weeks ago

Only your neurologist can guide you in choosing a DMT in the context of <your> MS.

Considering efficacy, safety profile and convenient dosing schedule; my personal favorites are:

Mavenclad (cladribine tablets 10 mg), Merck KGaA in Europe / EMD Serono in the US*
Ocrevus (ocrelizumab 300mg/10mL) for IV, Roche AG in Europe / Genentech in the US

*Currently under review by the FDA, approval expected for early 2019.

I’ve also read great things about Tecfidera, Lemtrada, Tysabri and Gilenya. In 2018, I’d avoid beta-interferons and glatiramer acetate, but that’s just me.


mlgilber1
3 weeks ago

Hey! I was on Tecfidera, but only for a short time due to a bad relapse and we can’t say it wasn’t working since it was only a short time. I did experience some of the side effects such as bloating, but it was minor. I’m now on Ocrevus and doing really well so far. I’ve only been on it for a couple months, but many of my symptoms have lessened tremendously or even disappeared which I’m so grateful for. I had minor reactions during the first half dose like itchy scalp, but they make sure to take care of it immediately and no reactions during the second half. I finally feel like I’m doing better and getting back to my old self. It’s always hard choosing a DMT because it’s trial and error and you have to consider the side effects. Best of luck to you!


nutshell88
3 weeks ago

I used to be on Rebef
Betaferon Interferon avonex
Its fine for some people safest side effects
But i couldnt continue with it
Stopped treatment 8 years or 9 after now im on gilenya
It feels simple stopped some shallow symptoms i noticed that but its risky
Lower immune system 50% to 90%
I keep seeing dark purple bruses on my body
Too careless to get checked or tested :p but im planning to
I just did blood test for now


highlander
3 weeks ago

@nutshell88
If I was getting dark purple bruises appearing on your meds I would suggest you see a doctor.
Please give them a call and see what they recommend at the very least.


bjcog
3 weeks ago

Hi @georniney, your start into this world sounds much like my own. First I had to learn to spell MS then I had to pick a medication from the eight or so available at the time. How on earth was I to do that? Didn’t the neurologists at this well regarded MS Center know what’s best?

Now, 5 years and 4 DMT’s later, I offer the following: 1) the medical establishment believes it is better to have someone adhere to a therapy, any therapy, than to be untreated; 2) they don’t know how a particular patient will react to any of the therapies: a. will the medication be effective, b. will any side effects, etc., occur and be tolerated. So the approach seems to be to have us pick the first therapy, hopefully increasing the buy-in and the adherence to therapy. Then, once more data is available about the individual and their individual experience with the therapy, it may be possible to provide more focused guidance.

In my case, wanting to avoid needles, I picked a pill. Although I had no trouble with it, subsequent OCT testing by my neuro-ophthalmologist showed it was not as effective for me as hoped. So I picked another pill. Again, I experienced no trouble with it, but blood testing showed it was suppressing my immune system too much. Now, with that history known, I switched to an infused DMT, and stayed with it until the risk profile started to change for me (again, determined by tests), so now I am on my 4th DMT. I’m hopeful that this one will do the trick.

The good news is that there are lots of treatment options. The unusual part is that, at least initially, patients are asked to choose a treatment. I joke that the neurologists’ approach seemed a bit like what I imagined a neighborhood drug dealer might do: if you don’t like the high from the first drug, try another, they have all kinds for you to try. But thinking about it some more, it’s really not all that much different from may other medical decisions: do you have surgery or try physical therapy? if surgery, go with open surgery or arthroscopic? in patient or out patient? local anesthetic or general? and on and on.

My own approach was to look for maximum benefit with minimal risk, whatever that meant to me at the time. Over time, as my doctors and I learned more about my MS and how my body responded to the different treatments, I/we were able to fine-tune that benefit/risk decision and, I hope, come closer to what will work for me in the long term.

So please fret little about the choice of medication. If you are like so many of us, you’ll be on that one for a while and will then change either as new information about you and your MS becomes known or as new treatments become available. On the other hand, if your first guess about a medication turns out to work well for you for a long time, congratulations.

I hope that helps.


highlander
3 weeks ago

@bjcog
Pretty well put.


nutshell88
3 weeks ago

@highlander yeah will do
But weekend begun here in saudi

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