-
Any tips for starting Firdapse?
Hello friends. I am still so new to all of this. I’m in the process of working with Catalyst to obtain firdapse and feel nervous about starting the drug. I’ve never been on medication in my life and the warning label is a bit daunting. Can any of you speak to this? What have been the positive impact of this drug on your life? I’m also going to sign up for the mentor program, but thought I’d start by posting here. Thanks from Colorado!
-
7 Replies
-
Hey @juliamunson
I understand your fears and concerns, starting a new medication can always be nerve wrecking especially if you’re not used to taking medication daily.
The chance of adverse side effects is pretty low, but always a possibility so they have to list and advise you of it. The only side effect I experienced with Firdapse was a tingling sensation around my nose and mouth but it went away after taking for a while, or became less noticeable. I do recommend taking it with food or a glass of milk to decrease the chance of stomach upset.
Your neurologist should be working with you and usually you start with a pretty low dose and taper up. This is the best way because you will find out how much your body needs, but the process can take a couple of weeks to figure out the right dose for you.
I know many people who have said that Firdapse has been a big help to them, @pricewool is one of them!
To increase the effectiveness of Firdapse, you can also take it with Mestinon, another drug that helps decrease muscle weakness. Lori Dunham recently wrote a column about the effectiveness of Mestinon, you can check out here.
Hope you found this useful 🙂
Keep us posted!
-
@juliamunson I agree with all that Ashley has said. Firdapse is the only FDA approved medication for LEMS, though certainly only a part of an effective treatment plan in many cases. At high dose, 20 MG, I do experience the same tingling she describes on occasion, but not always.
See how it does for you and titrate the dosage up as you and your neurologist agree, until you feel it is working well. Since this is your first med, it may be difficult to exactly determine what “good” is.
The more you gain experience treating the symptoms, the better your judgement will be.
As Ashley said, keep us posted, and work with your Mentor.-
Thank you for responding, Ashley, and for your tips.
And can you say what this medication has done for you? What difference it has made? I know it’s the recommended medication, but all I find are the warnings and none of the benefits.
-
-
Hello Julia
I have been on the drug ruzuri which is similar to firdapse. I have had great success and I take a slow release mestinon to give it a boost.
I feel a tingling sensation and am very sensitive to cold. Other than that the drug has given me a new lease on life. I do believe I would need care and be in a wheelchair without it. I like you had never taken drugs before my diagnosis of LEMS.
Good luck to you!
Joanne Evans
-
Hi Joanne,
Thank you for your response. Can I ask how long you’ve been on it?
I started noticing something wasn’t “right” with my legs last summer. I then was diagnosed with ovarian cancer in December, and began treatment pretty much right away. That involved 6 rounds of chemotherapy with a major surgery in the middle. My body is spent. It’s been a month since my last chemo (I’m done with it) and I have trouble walking….I can’t discern how much is the LEMS snd how much is the neuropathy from the chemo. I can hobble around with my walker – usually have slightly better energy in the morning….but then am mostly in bed from early afternoon on.
I’m learning to be patient and give my body the rest it needs after such an arduous treatment protocol – and my LEMS was caused by the cancer.
I’m looking for hope – so when you say the medication gave you your life back….I’d love to hear more if you’re open to sharing. Thank you so much.
-
-
Hi Julia,
I started taking Firdapse this past October and am now on 20 mg 4 time a day. I sometimes have tingling in my mouth or lips; more rarely, in my fingers. It goes away very quickly. I am able to get out of bed on my own now, and I don’t wake up in terrible muscle pain. Before the Firdapse, I could rarely walk to my mailbox, and now I don’t have any problem, as long as I walk fairly slowly. Of course, you have to remember that LEMS has flareups based on your body being stressed physically or emotionally. I don’t get nearly as good effect from the medicine when I forget and push myself too much. When that happens I need a full day of rest to get back to normal.
As far as the warnings with the medicine, all medication literature can be scary, if you read what might be the side effects. Many of the things listed only happened to a very small number of people in the studies. The benefits of most medicines far outweigh any side effects.
Hope to hear more from you as you get started with your treatment. Joyce Crawford
-
Julia
I started ruzugi last June 2020. I was diagnosed with LEMS that January 2020.
the drug has just been approved by the Canadian government and prior to that it was sent to me through the USA. I feel very fortunate.
I was on prednisone but could not tolerate that drug. I then went on azathioprine and have just taken myself off it. It wasn’t helpful to me at all.
Good luck and be kind to yourself! Keep us updated!
Joanne Evans
Log in to reply.