Last reply 2 months ago
Treatment Question – No Symptoms

Newly diagnosed and waiting to start copaxone (my only option while trying to conceive). So, I don’t have any symptoms and I haven’t had a relapse since my first initial relapse of optic neuritis two years ago. So, how will I know if the treatment is working? It almost seems weird to start a treatment where I might have side effects and feel worse than I do now, but I know MS can be attacking my brain even if I am not showing symptoms.

Also, has anyone thought they weren’t having symptoms and started feeling better once starting treatment?

The only odd note my doctor has put on my file is that I deny fatigue. Maybe I don’t even realize how tired I am…can treatment help improve symptoms like fatigue?

Honestly, I have no idea what to expect. I have tried to read other posts on copaxone, but there are a ton.

Thanks!

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I took copaxone for a number of years and with any of the ms treatments it’s all about playing the long game. And it’s probably the drug with the least rubbishy side effects as well. It can be a nuisance at first but I know from experience how fast things can progress without some preventative medication; it’s always better to start early rather than later, believe me. So to answer your first question, if it’s doing it’s job right you won’t know it’s there, and while it isn’t a cure it took me from a relapse every 9months/a year, to 1 in 7 years.

Secondly, it’s common to have minor symptoms you might not associate or catch as being MS related. They’re usually things that creep up on you so slowly you don’t notice till they’re finally debilitating.

If I was to give you any advice it would be:

Don’t be afraid. Copaxone is what they consider to be a level 1 MS drug. It means low to no risks or side effects. And if they’ve caught your MS early your prospects are great if you start treatment. That means a relatively normal life with only the possibility of a periodic speedbump.. Occasionally some side eye from airport security if you’re travelling but otherwise normal. 😅

So, you got this.

If you can at all, learn to administer the injections without the pen and remember to rotate- the auto injector is easy and quick but it packs a punch and the noise? Oh boy, sometimes it can leave you sore and bruised depending on where you use it. They say the copaxone is the cause but I stopped bruising and no more discomfort or skin reactions the day started I doing it myself. Don’t be afraid to wipe down an area and try it without the pen if the areas start getting tender. Slower, gentler release into the tissue is going to leave less of a mark. One trick I picked up at the start was using a pin to lightly test a place in the suggested areas. Some parts will have less sensitivity than others, nerves and stuff. A light prod of a pin will tell you if a particular spot is a no go.

Go slowly at the start. Till you’re used to it, don’t be afraid to give yourself time and space around taking your medication. It can be stressful and terrifying and life can be really busy but set aside a half hour, layout what you’ll need and have that ice pack handy.

Don’t be afraid to ask for help. Don’t be afraid to speak up if you don’t agree with something – it’s your body and MS varies so much. Doctors are people and people can be wrong. Never feel like you’ve no options and never be afraid to ask for a second opinion.

Sometimes if you’re actually sick some symptoms can temporarily flair up but they appear quick and start disappearing when you start feeling better. MS symptoms on top of the symptoms of another illness can be dreadful and if there are drugs that can speed up recovery, go for it. Don’t let yourself suffer!

I hope things go well for you! The initial diagnosis can be a rollercoaster.


rayrayjean
2 months ago

Wow, @emma_madamn_degrimes. Thank you so much for your detailed response. This is incredibly helpful. You have no idea. Also, I appreciate the tips and tricks. I will probably be referring back to this post once I get the go ahead to start using the meds.

It is so encouraging to hear that treatment stopped you from having a flair for 7 years and to live a fairly normal life. The two neurologists that I have seen have said a similar thing to me, that my prognosis is great because they caught it so early. But, it is hard to process and understand with an MS diagnoses and hearing all these stories. So many stories. Not many of them seem that hopeful. Thank you!!

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