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Looking for suggestions...

Sadieschafer profile image
12 Replies

I had my Annual MRI this week, and there were new lesions. My nuerologist is sending me for a three day steroid treatment ...which I thought was a little odd, but maybe that is normal if the lesions are active?

He also wants to Talk to me about possibly switching medications because of the lesions. I have been taking copaxone. I am leary of the other drugs....and would like any input that others may have on other drugs, side effects, etc.

thank you!

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Sadieschafer profile image
Sadieschafer
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12 Replies
Royjr profile image
Royjr

That sounds right, especially if the lesions are active. With me I was on Avonex and kept having new lesions. The doctor put me on Tysabri because it’s a more powerful drug. He said the ABC drugs are good but they’re not as effective. I haven’t had any bad side effects (flu like symptoms etc..) and no new lesions. Everyone different so I wish you the best on what ever you decide.

Raingrrl profile image
Raingrrl

Hi Sadieschafer ! I was on Copaxone for over 10 years when it stopped working for me and we saw new active lesions in an MRI. Copaxone was my first DMT but at the time I started on it, the only drugs available were the ABCR's. I was on Tysabri afterwards because its more powerful as Royjr mentioned. Recently was switched onto Ocrevus because I'm JVC+.

The good news is that if your doctor wants to switch you off of Copaxone, there are many options these days.

Sadieschafer profile image
Sadieschafer in reply to Raingrrl

How were the side effects with the others that you have tried? Sorry for my lack of knowledge, lol....but what exactly is JVC?

Raingrrl profile image
Raingrrl in reply to Sadieschafer

I haven't had any side effects from either Tysabri or Ocrevus that I know of but we are all very different. The tricky thing with M.S. and the DMT drugs is that it can be hard to tell what is causing new symptoms. And when you are taking multiple medications it makes it that much more difficult to figure out what is causing something new.

Instead of trying to explain what JVC+ means, try the info here: multiplesclerosis.net/livin....

The problem with being JCV+ is that it can lead to PML. There is a higher risk of this happening with some drugs than with others. If you have a conversation with your doctor about switching your medication from Copaxone to something else, it is important for you to discus this topic with them at that time in case the new medication being considered carries this risk. To find out if you are JCV+ or JCV-, its a blood test.

Sadieschafer profile image
Sadieschafer in reply to Raingrrl

Thank you for the advice! I take no other medications, so I guess I will go with a combination of my gut and what the doctor recommends.

Sadieschafer profile image
Sadieschafer

I have had no new symptoms, and have actually been feeling great. So hearing about new lesions is a little scary. But I'm also nervous about changing from copaxone. I hear nothing but scary side effects about most of the other choices.

Have you had worsening symptoms that make you think they may suggest a change for you? Hopefully all is good 😊

pihokken profile image
pihokken

I was never on copaxone. I started with Avonex, then Rebif and then Betaseron. I had no side effects with the Betaseron and was on it for many years. Good luck! Let us know how you make out.

msinca07 profile image
msinca07

I have had 3 steroid treatments over the 11 years dealing with MS. They did help relieve the relapses. The thing I have learned is to make sure to stay hydrated, I use mints to help with the metallic taste, and I have them infuse it slowly over 2 hours because I get severe headaches.

I was on Avonex until this past Decade. and had to switch, started on Extavia. Side effects are minimal. Biggest issue is injection site gets red.

Good luck

Juleigh21 profile image
Juleigh21

I started on Copaxone and continued to have relapses and new lesions. I did a brief stint on tecfideria but had the worst relapse on that. Now I’m on tysabri. I’m JCV negative. I did have a relapse in December but the doc is leaving me on tysabri unless I become positive or have another relapse within a year. I’ve noticed no side effects on tysabri and my progression has slowed way down. Good luck with your choice!

Fancy1959 profile image
Fancy1959

Sadieschafer, it's Fancy1959. First thing you need to do is distress and realize at your neurologist is the professional and he or she is doing what is best for you. Stress is very detrimental to your well-being and your MS. It is your neurologist job to stop new lesions from appearing and your disability from progressing. Since you're MRI shows new lesions your neurologist has little choice but you try a different drug or therapy on you to find out what works best for you.

There are so many drugs and Therapies on the market today it would overwhelm you to go over each drug and possible side effects. You also need to remember each individual tolerate drugs in a different way. What affects one person might not affect you at all so why were you about a possible side effect that you may never experience?

Once your neurologist talks about what therapy he is looking at get all the information he can give you on the drug. After reading it then come back to us and we'll share our experiences with you. Remember they're just our experiences and you may never experience it quite the same way. Keep faith in your doctor because he or she is the professional.

Get back to us when you know more and keep us in the loop as to what is going on with you. Take a deep breath and remember to de-stress and do not worry about things that may never occur to you. Until we speak again please take care and try to relax.

kdali profile image
kdali

Steroids and a new drug sounds right. I'm sorry you have to choose new side effects. I think it's a very personal choice when you entertain new drugs, and your neurologist will likely have the drugs narrowed down to a few for you to read about. I hope whatever your choose works!

vduckery profile image
vduckery

I’m on Aubagio. No side effects except a slight headache for the first few day. Two years no new lesions or activity.

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