Trying a new DMT

[Lmh]

Hey everyone! Just wondering what my fellow SPMSers are taking to prevent relapses. There are so many options with each having their own host of side effects.

I was on a very big gun ( Tysabri) and had to come off because of PML risk. My Neuro is recommending Copaxone (safe) or Tecfidera.

I know there is a PML risk with Tecfidera so I'm wondering if after taking Tysabri for so long it even makes sense to explore Tecfidera . My worry is Copaxone won't have a big enough punch on MS. As always thanks for your help!😊

[cl3me]

I have been on copaxone 5 years now, no relapses and 1 new lesion in that time, ms is "stable".

Sometimes I wonder if instead of 26% effective, it's effective in a quarter of patients, because it seems like it does nothing for many, but those of us that respond do really well on it.

No routine testing needed, still gets some injection site bumps and itching, but that falls in the category of mildly irritating, and easily managed with Benadryl cream.

When I started, the oral meds were not yet available on pharmacare, and I was denied tysabri as I needed to try a first line, hard to say what decision I would have made....but it has worked out well for me.

[AMFADVENTURES]

Lmh, you might investigate Rituxan with your Neuro. In addition to being cheap, effective, relatively easy and safe, there have also been indications it can help with the potential Tysabri rebound effect. Your Neuro may have to argue with your insurance company to get it approved though because it is currently off label for MS.

[Lmh]

Trying another DMT

Thanks for the info. I've been reading about Rituximab, but unfortunately it isn't covered by my insurance. I'm still going to have the discussion with my Neurolgist. I've been waiting and worrying about the rebound effect from Tysabri.

[girl1dir]

Copaxone failed me in 6 months (I didn't fail it). It was my first DMD of choice because of the low side effects. Turns out my MS was a bit more aggressive. I went from ~5 lesions to double in 6 months.

I switched to Aubagio. I was terrified, but I got over it. If I had tummy upset or wasn't hungry -- so what. After a long talk with the doctor and sitting in on TWO different talks given by doctors I was OK with whatever Aubagio handed me. A few months on the meds, I felt like I was having a flare of Optic Neuritis. MS Dr. ordered an MRI. Nothing but good news came in from that MRI. No new lesions. The old ones were smaller. No Active lesions. No ON. Since then... I have been happy as a lark that it is working, even if I do have some side effects. They are tolerable and treatable (yes, it means some additional pills to take).

Tecfidera was the other option my Neuro gave me before starting Aubagio. I am not great at taking pills in the middle of the day, so I opted for Aubagio. If you're a great pill taker -- try it! =) I'm a great pill taker at dinner and bedtime though.

[Lmh]

Starting a new DMT

I'll have to refamilarize myself with Aubagio. I'm not adverse to pills, but like you they would be easier to take in the morning or evening ( less likely to miss a dose).

I realize that Copaxone might very well not be the answer for me since it doesn't work for everyone. I would love to be lucky for once!! 😊Thanks for the input!

[RonRuns]

I've been taking Tecfidera for a bit more than two years. One pill with breakfast, one pill with supper. I've had no side effects and not noticed relapses although I do feel more fatigue, cognitive problems and heavy legs than two years ago.

My lymphocyte count is low but not critical. My neurologist said it was on the low side before starting Tecfidera. He's keeping track of it closely every three months.

He's not worried about PML. The number of PML cases is very low. I know that it's a lethal disease but I have much more chances getting killed in a car accident or other and with the proper tests (JC virus antibodies) and tracking the chances are even slimmer.

[Froggie]

I've been taking Tecfidera for about three years now with little or no complications. So long as I take the meds with food in the morning and have a decent meal in the evening, I'm fine. It's the first medication that doesn't make me feel like crap and is efficacious to boot. Plus not being a human pin cushion is great.

When I was first diagnosed seven years ago, I was taking Copaxone. Besides breaking out in hives at the injection sites, I had relapses every three months or so like clockwork. Turns out I was a non-optimal responder and I was put on Rebif. The Rebif worked at first, but I felt like I was fighting the flu post injection. The Nurse Practitioner who suggested Tecfidera (BG-12 it was called back then) did the research on it and it came highly recommended. My neuro gave her blessing and I haven't looked back.

[Lmh]

Trying new DMT

My doctor did mention Tecfidera as a possibility. Just had MRIs done today to see if any new enhancing lesions are present. After being on Tysabri for three years I'm concerned still about PML. I'm I more at risk for PML on Tecfidera because of taking Tysabri for for three years? I have read they monitor your lymph count, and if it dips too low it may be an indicator of risk.
Trying to scour all the info I can find.
Thanks for the reply!

[Lmh]

Trying new DMT

My doctor did mention Tecfidera as a possibility. Just had MRIs done today to see if any new enhancing lesions are present. After being on Tysabri for three years I'm concerned still about PML. I'm I more at risk for PML on Tecfidera because of taking Tysabri for for three years? I have read they monitor your lymph count, and if it dips too low it may be an indicator of risk.
I do like the idea of no injections!
Thanks for the reply!

[Hannah Leah]

I'm stumped too

Diagnosed in 2001, but probably have this thing since 1984 (a looong time!). I've been on copaxone since 2003 and have had only 3 flares requiring steroid infusion for recovery. BUT the last one (2 years ago) was a doozy - and left me much more impaired: weaker muscles, mobility weakness and lowered stamina for walking. Now my neurologist suggests perhaps the copaxone isn't strong enough anymore. He suggests Plegridy, an interferon. I've read people's experiences and it sounds horrible. I've had no issues with copaxone at all. virtually no side effects other than the injection site bump. I am doing meditation, yoga, good diet, Vit. D, and feeling pretty good all around. I don't want to move to illness-producing drugs. The neurologist assesses I am doing relatively better than 70% of those with this condition. I've been looking at the stem cell transplant therapy too, which neuro thinks is "not ready for prime time". What to do, what to do? (I should add that I really have a lot of trouble walking even though all around healthy, I wish I could go back to living like "normal" people rather than in this MS experience.)

[Lmh]

Dmt

I have SPMS that shows no enhancing lesions, or active disease. This seems to change the view point on DMT's. I feel like my doctor is suggesting Copaxone as a temporary place holder until the new ( sister of Rituximab) Ocrelizemab becomes available later this year.

That's wonderful you've had such success with Lemtrada! I was worried about the possibility of secondary auto immunity developing, which wasn't an issue for you.��