What was your first DMT?: I will be... - My MSAA Community

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What was your first DMT?

Qt314grl profile image
17 Replies

I will be discussing DMTs at my next appointment. Newly diagnosed but haven’t been given the type yet....I’m assuming RRMS but not sure.

What was the first DMT your Dr tried? How long did you take it if you switched? Did you have any input in the decision of which one to take?

Thanks in advance! My head is spinning right now.

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Qt314grl profile image
Qt314grl
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17 Replies
greaterexp profile image
greaterexp

I was diagnosed September of 2016 and began Copaxone 40mg in January of 2017. My doctor asked me to look at choices ahead of time and think about what I would feel comfortable with. We settled on Copaxone for its long history of efficacy, relatively few side effects, and my comfort level with giving myself sub-q injections. We discussed Ocrevus at the next appointment, but both agreed that we would watch for awhile before considering a switch.

I know it seems overwhelming, but write down your thoughts and questions for your neurologist. It’s difficult to make that initial decision, and there’s the dealing with insurance, but if you don’t respond well to the first choice, there are others to turn to.

I wish you well and hope you will let us know what you and your doctor choose.

Qt314grl profile image
Qt314grl in reply to greaterexp

Since they are sub q, I’m assuming you can do them in your stomach, right? I’m an IVF veteran, so injections don’t scare me. ;)

greaterexp profile image
greaterexp in reply to Qt314grl

There are several areas which are rotated. The fatty area of your abdomen, the upper arms, hips, and thighs are used. I have little fat anywhere, and none on my thighs, so I just rotate the other sites. Shared Solutions is Teva’s program which offers nurse visits and training, as well as an “Autoject” device to make self-injection really easy.

Miriade profile image
Miriade

Hi, after being in the hospital and having your lesions expanding,and serious physical side effects, (I was the same way at the beggining), try with your doctor the most effective options in DMT that works inside the brain immediately like Tecfidera, Ocrevus, Ofatumumab, and even short time Cladribine if tour doctor would try. Even Rituximab.

Juleigh21 profile image
Juleigh21

My first doc put me on Copaxone. It works very well for many but unfortunately not for me. I kept relapsing and getting more lesions. Then I was on Tecfidera. I felt sharper -cognitively- on that med but could barely move my legs. The next doc switched me to Tysabri. I just had dose 23 of that and am doing pretty well. No new lesions and just minor relapses. Good luck! Hope you have an awesome doc!!

kdali profile image
kdali

Copaxone, it was my only option since I was trying to have a baby at the time of diagnosis. I'm still on it and it's been 14 months. I had input on whether I would take it at all, or if I would start it and stop when I got pregnant and then resume use after delivery.

She did say that she would not put anyone unstable or newly diagnosed on the generic form, so keep this in mind if you choose Copaxone.

Doubled51 profile image
Doubled51

When I was diagnosed my Dr ordered an oral med but I can't remember which it was but insurance turned it down. So he gave me a choice of the injectable. I chose Plegridy because it's injected every 2 weeks. I finished my 6 month injection yesterday. My last MRI had no new brain lesions and 1 small non active lesion on cspine. But we are all different. Auto inject pens are the way to go. Easy and painless.

Good luck

Donnie

Jesmcd2 profile image
Jesmcd2CommunityAmbassador

Hi Qt314grl I'm sure your head feels like it's going to spin right off, right about now.😵 Its a lot to take in all at once. We know, we've been there.😊

MSAA has what's called S.E.A.R.C.H. For Treatment Options. mymsaa.org/ms-information/s... there is a place to d/I'd the booklet so you can take it with you to your Neuro, to ask questions.😊

It gives you all kinds of info on the different types of DMT's. Hope that helps some.😊

J 🌠

Qt314grl profile image
Qt314grl in reply to Jesmcd2

Jesmcd2 thank you! That document was very helpful!

agate profile image
agate

Qt314grl , I took Avonex first and stayed on it for 3 years. After a couple of years with no MS drugs, I went on Copaxone (the daily shot) and stayed on it for nearly 3 years. Before deciding on Avonex I had been given boxed kits with videos about Avonex, Betaseron, and Copaxone. The neuro told me I should look at them and make up my mind. He said it didn't much matter as they all "do pretty much the same thing." (Rebif wasn't yet available.)

I found Copaxone easier to tolerate than Avonex. I didn't much mind having sore swollen spots on my arms for a few days, compared to the flulike symptoms for a day or more after each Avonex shot. It took about a year for those to calm down, and they never really went away while I was taking Avonex.

Good luck to you in your decision. I think many people find Copaxone easier than the interferons.

Miriade profile image
Miriade

Hi, my first DMT was Tecfidera, oral medication, but the insurance will try to denied everything that are in the category of new DMT. My doctor made pressure to approve and I got immediately because I was in huge flare up with many lesions in my brain,and worked well cleaned all lesions, but had some digestive side effects you can learn to deal with the wonderfull support from the Nurses on phone all the time. The suggestion from Jes is right, you should learn about names, drugs effects, options to be more familiar making easier to choose. I had to stop after 2 years Tecfidera, but I knew what to choose, I did not let they push me to old fashion medications. Whats really works now is the one with the action on CD-20 B linfocitos cells specific target, not affecting other from immune system and cleaning brain lesions. Ofatumumab is the newer after Ocrelizumab and its in the market now and its subcutaneo. Ocrevus is IV. I dont know your age, but if you are below 55 you can be enroll in the pharmaceutical company trial, in fact you will only will take that drug. Not placebo.I cannot be in any trial anymore because I passed the cut age of 55 years old. Lemtrada is different sistem and does not work fast as you need now. Aubagio is what I am taking now but is very mild, not so efficient for reduce brain lesions, only to reduce some chances of % flare up. My choice at the beggining was Ocrevus but I got virus and decided not taking Ocrevus. Aubagio is antivirus, safe for me.

kdali profile image
kdali

That's interesting because my Copaxone nurse called and mentioned that they don't know what is used in the generic instead of mannitol. And I saw an article where Teva was mad that they were allowed to use the name glatirmer because it was so different.

Ah, I didn't know there was a newer version! When will your next MRI be to see if it's working?

cljones profile image
cljones

@Qt314grl the first I tried was Copaxone, for 3 years. Now I am on Gilyena. We did Copaxone first because it had less side effects.

bavery207 profile image
bavery207

Qt314grl I was diagnosed about 2 1/2 years ago. My Dr. was thinking I might have PPMS but wanted me to try Rebif just in case. At 10 weeks my primary care Dr. did some routine blood work and the results were quite different from usual. She contacted my neuro. and he took me off the Rebif and I have not been on any DMT until Ocrevus was approved. I had the first two 1/2 doses of Ocrevus late this summer, and am waiting for my next dose in early Feb.

kdali profile image
kdali

Oh yes, I remember you saying that somewhere else and I forgot.

StacyHayward profile image
StacyHayward

Diagnosed in May 2000. At the time only Avonex, Betaseron, and Copaxone were available. Started on Avonex. Tolerated it very well. Stopped after about a year to get pregnant. When I was ready to begin again Rebif was available and I’ve been on that ever since.

Juliew19673 profile image
Juliew19673

DXED in May this year and both Neurologist I had at the time suggested Ocrevus. I've had the first dose in June/July and currently doing very well. I credit it and the IV steroids (had that twice) and THC (for spaticity).

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