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11079760 tn?1483386130

Share your DMD history, please

I know there are several of us working through the personal choice of DMDs. For those who are taking them, would you please share:
1. What are you taking now?
2. How did you decide?
3. How satisfied are you overall? (side effects, effectiveness, etc.)
4. What other meds did you try previously? Why did you switch?

I understand that this is a completely personal choice and that everyone responds differently to medications. However, in hearing others' stories, I think it helps those of use either deciding for the first time or considering making a change think through our own situation.

Thanks for sharing!

Cheryl
11 Responses
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382218 tn?1341181487
1. Gilenya

2. Wanted something with potentially better results after new lesions appeared on MRI.

3. No side effects. Not sure how satisfied I am. I will have been on it two years in August. Although my brain MRI in March showed no new lesions, I am currently having a relapse which for the first time in my ten years having MS has caused substantial symptoms affecting my walking. If my spinal cord MRI shows much change I will be faced with making a change. I'm considering joining a clinical trial of ocrelizumab.

4. My first DMD was Rebif which I wasn't on for very long as it elevated my liver enzymes significantly. I switched to Copaxone shortly afterwards and was on it for about six years. Was fairly stable but switched after new lesions appeared on MRI.

Helpful - 0
11079760 tn?1483386130
Thank you, again, for all of the posts. It is so helpful to learn from others' experiences!

I think that Biogen must have heard my grumbling & sent me a lower dose or something because my injection this past weekend was the easiest one yet. Crazy. Maybe it's a sign that Plegridy & I are going to figure out how to co-exist after all!! I have 1 more shot in my fridge & 2 on the way today. Guess I'm sticking it out a bit longer...

Cheryl
Helpful - 0
Avatar universal
I use Betaferon ( I believe the brand name in the US is Betaseron. The choice for me was a no-brainer. I am not a fan of medicine, and the thought of injecting myself with a foreign substance really bothered me (actually it still does.) However, I decided better safe than sorry. Betaferon, from my research and what my Neuros (I regularly see 2) tell me, is the lowest dosage available. Regarding side effects- for the first two weeks, I had mild flu-like symptoms such as body aches and cold sweats for a couple of hours after doing the injection. This really wasn't a problem though because I took some Tylenol, did my injection and went to bed. Slept through it all. I had my initial onset in November 2014 and to this day have not had a single relapse. My 1 year MRI was also clear- no new lesions. For now I will continue with Betaferon, no reason not to. All the best!
Helpful - 0
12080135 tn?1453627571
Hi Cheryl,
I started Tecfidera as my initial med last Sept - had to wait for it (was diagnosed in the February).
My reason for picking was I'm rubbish with needles and hated the thought of doing that. I also read up a lot and thought Tec had a pretty good set of results if the side effects were tolerable.
The unlikely PML thing, I'm sure with the frequency of blood testing, they'd pick up any danger signs so you could swap to something else if needs be.

I've forgotten and taken it late a couple of times, but I think as long as there are 4 hrs left before the next dose you are ok.

Initially:
I had extreme whole body flushing when I was on half dose (first few days), mainly middle of the day. Since being on full dose it's pretty gd to be fair. I get face/neck flushing maybe a couple of times a week now. Also very very occasional nausea, stomach cramps or loose stools.

All side effects are pretty mild and can be sorted with over the counter treatments such as mini aspirin for flushing (takes about 30 mins without to go usually). The biggest factor I've found is making sure you eat when you take the pills. I take mine half way through breakfast - usually muesli or a muesli/nut porridge. You are advised to have something with carbs/fats. Both of these have slow release carbs plus nuts.

You do need to have lunch - my normal fruit/yogurt combo isn't enough to avoid the lunchtime flush, but if I have say a plain bagel with butter then it helps.
Dinner again, take it mid meal.

I have put on some weight due to increasing my food intake, but having spoken to my MS Nurse she says to get my body used to the meds first, then worry about the weight (I'm not over weight but have a bit more round my middle than I'd like now!).

I guess you have to consider what's right for your life style, regular tablet taking doesn't worry me, it's just part of my routine now, for others that would be a deal breaker.  The main thing these wise old owls on here said to me was, if the first DMD is not right for you then we are lucky enough to have the luxury of trying something else these days.

Let us know what you decide.
Nx
Helpful - 0
11079760 tn?1483386130
Wow! Thank you, everyone, for sharing your journey. It is incredibly helpful to have this in 1 place and gives me food-for-thought regarding my own choices.

Cheryl
Helpful - 0
Avatar universal
Hi there! I read somewhere (the Tec leaflet maybe?) that chronic rhinitis is a relatively common side effect. My nose dripped a lot and still goes through phases but about 2 months in I had a lot of post nasal drip. I was blowing my nose for months with no cold.

I did get a sinus infection (around the time my lymphocytes tanked in month 4) but the xray of my sinus was fine 2 months after that. No meds worked (homeopathic, 5 different types of allergy meds, corticosteroid nasal spray, twice daily sinus rinse...) so my doc agreed it was likely Tec related.
Helpful - 0
1 Comments
I hadn't picked up on that either Corrie! I've been going back to my GP thinking it was linked to allergies as I have bad catarrh and blocked nose (might still be). Nothing works, just trying a homeopathic garlic and something or other, a few days in.
Nx
667078 tn?1316000935
I did Copaxone. I had no side effects. I got used to the shots. I had to stop DMDs when I started chemo.
Helpful - 0
Avatar universal
My first DMD was Copaxone, and what a nightmare. Pretty much everyone gets mild to nasty skin reactions, but mine were off the charts. After 7 or 8 weeks my neuro decided I was allergic to it and took me off it.

Shortly after that I started on Avonex. Once a week sounded better than the other options and I really didn't mind the deep injections. Usually pre-medicating with Aleve dealt well with the flu-like stuff, but now and then I'd be hit regardless with a whammy reaction--fever, shivers, aches and pains, general misery.

I very much looked forward to the oral meds, and a couple of years ago began Tecfidera. Bad gastric issues to begin with, so my neuro backed me off and started me much more slowly. That worked fine, but I'm not at all sure Tec is working fine. Have had a couple of big relapses and my confidence level is considerably reduced. There are a lot of others like me out there too. I'm hoping my neuro will let me change soon, probably to Gilenya.

Corrie, you think nasal problems and Tec are related?? I never thought of that. I do have pretty severe nasal issues, but have had different ones all my life. Runs like crazy in my family.
Helpful - 0
5112396 tn?1378017983
After I was diagnosed, I was given the option of entering a drug trial. After I finished the screening process in March 2011, I entered a phase III trial for Daclizumab High-Yield process. Two years ago I entered its extension.

My reasoning was three-fold.

1. Guidance.
My diagnosis was lightning fast. I valued the fact that I would have monthly face-time with the professionals for the first few years. I could get any questions answered promptly by the pros and be much more closely monitored.

2. Gamble.
It's a gamble. I was gambling that this drug will be more effective than what was available for me at the time (just the injectables were on the market then). The 20-page document I sign to participate means I'm well aware that this is not without potential risk. It's one I have chosen to take.

3. Giving back.
When I was diagnosed, I had the extreme good fortune of being overwhelmed. I mean that. It was daunting, but I was overwhelmed by how many drugs I had to chose from. This is a privilege. I was part of the first generation of people with MS to have any disease modifying options. Until the mid-90s, people with MS could at best be monitored and get steroids for acute attacks.

I so value the chance to be proactive, and I only got that chance because many thousands of people volunteered for drug trials when there was a lot less known about their effects. I value that risk they took. I choose to take the risk for those who haven't yet been diagnosed so they have even more options and even more is known about how drugs effect us long-term. Pay it forward, I suppose.

I realise my DMT route was quite unusual compared to most. It's not even one available to many. But I thought I'd chime in just to help you get the widest perspective possible.
Helpful - 0
Avatar universal
Hi there missy!

Started Rebif in May 2013. Chose it because I didn't want Avonex (inject into the muscle) or Copaxone (no way I was doing daily injections). I forget why I didn't want to do Betaseron.

Mild flu like symptoms the morning after shot and my arms (biceps) got spastic and it made reaching a few areas impossible (couldn't hold the auto-injector still) since my injection site reactions also last 2-4 weeks I was already limited in areas to inject. Had one relapse in Aug 2013 but Rebif would likely not been fully in my system so I can't blame it for the relapse.

I switched to Tecfidera in May 2014 and had horrific GI issues for almost 3 months, during that time I continued to get new symptoms and my absolute lymphocytes tanked which raised the potential of the dreaded PML infection.

In Jan 2015 I had a relapse that has evidently caused permanent damage and more new symptoms. I do not have any visible MRI changes however and my absolute lymphocytes have crept back up into normal range (that took over 6 months).

Honestly, I am not happy on Tecfidera, the flushing has become a bit of a nightmare for me (blotches and rash in addition to flushing with no real pattern that I can avoid). I also developed post-nasal drip in my first month of Tec and it continues 2 years later (thankfully it is about 80% better since I started my overactive bladder med).

Having said that, no new lesions and only one attack (neuro would prefer 2 attacks in same year to warrant a switch) makes it seem like Tec might be working for me despite my progression.

Since my next DMT would be Gilenya (according to my new neuro) I might as well stick with the evil that I know. I no longer want to do injections and not looking forward to Gilenya so I will suffer through the blotches and whatever else for now.

Essentially the CRAB drugs (Copaxone, Rebif, Avonex and Betaseron) are only around 30% effective (or slightly more). Gilenya, Aubagio and Tecfidera are more effective but the effectiveness comes at a cost.

Good luck with your decision,

Corrie
Helpful - 0
5265383 tn?1669040108
1.  Copaxone, daily injection (first DMT)

2.  It was an easy decision for me.  I wanted treatment.  I did not want flu side effects, liver enzymes affected or depression (interferons).  More importantly, I have pre-existing mild cancer that is kept mild by my immune system.  My neurologist originally prescribed aubagio, but when I brought my history up he agreed completely that suppressing my immune system would not be in my best interest.  So the orals were out as well.  I`m hoping copaxone works; next choice will be more difficult.

3.  I FEEL great, and appreciate that the only side effects are skin related.  I tend to be very sensitive to pills so it's working well this way.  I have had a couple of reactions due to injecting to wrong depth and one was quite painful, however it's a learning curve.

I cannot comment on effectiveness.  My neuro assures me I will likely still have my summer relapse since copaxone takes 5-56 months to build up in system.  I will let you know in December :).

4.  New diagnosis in January so no prior DMTs.  I will add that I also take LDN, which does help for symptoms however I had three relapses while taking it so I don`t believe its`s as helpful for progression as some might say.

Thank for starting this topic, Cheryl :).
Helpful - 0
1 Comments
5-6 months .. not 5-56 months :P.
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