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FIRDAPSE side effects: Does everyone experience them?
There has been a lot of online talk about the side effects with FIRDAPSE. Some patients have been unable to tolerate Firdapse. However, there are still a lot of patients on FIRDAPSE. Does everyone experience side effects other than the tingly feeling around the face when it starts working? I ask this question because just as I’ve experienced with different IVIG brands, it seems different brands work differently for everyone. How about for you, are FIRDAPSE side effects tolerable for you or not? (Let this conversation be one of sharing personal experiences with FIRDAPSE- thank you!)
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60 Replies
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Since I have started taking Firdapse my health has declined immensly. I have fallen numerous times, fractured my shoulder and I don’t like the way it makes me feel, weaker than ever
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Hi Linda! I’ve responded to your introduction as well. I’m a moderator on the forum. First, I’m assuming you have a LEMS diagnosis and are under the care of a neuromuscular neurologist. My first suggestion to anyone with LEMS is be very proactive. I’m a veteran in the VA medical system, and you do have to look out for your own interests. I hope you have or will report your response to medications with your neurologist. They need to know you don’t feel Firdapse is getting the job done. There are other options, so your physician needs to know. I’ve always felt LEMS is a collaboration between me and my neurologist. Be proactive.
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En el caso de mi hijo en España desde que comenzó el tratamiento de LEMS le recetaron Diaminopiridina 3.4. A veces le da algo de dolor de cabeza y visión doble, gracias a Dios con el tiempo estos síntomas han disminuido.
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Rafael’s comment translated-
“In the case of my son in Spain since the treatment of LEMS he was prescribed Diaminopyidine 3.4. Sometimes it gives you some headache and double vision, thank God over time these symptoms have subsided.”
@rafaelflores
Rafael, I only took firdapse for a short time, but the side effects I experienced were tingling of the hands and feet and a pretty bad stomach ache, especially if I was unable to take it with food. It also gave me insomnia if I took it several hours before bedtime.
Blurred vision is included on the list of most common side effects experienced and everyone is different! Thanks for sharing!
Rafael, sólo tomé firdapse por un corto tiempo, pero los efectos secundarios que experimenté fueron hormigueo de las manos y los pies y un dolor de estómago bastante malo, especialmente si no pude tomarlo con comida. También me dio insomnio si lo tomé varias horas antes de acostarme.
Visión borrosa se incluye en la lista de efectos secundarios más comunes experimentados y cada uno es diferente! ¡Gracias por compartir!-
Thank you, Ashley. The firdapse does not work very well. The 3,4 dap worked perfectly. I was taking it for 30 years until the big company decided to kick them out and give us something else.. I was in the study of 34, dap. My life has changed since others gave us this bad drug, because I was doing great and now I believe they’re out for the money and not for our health. I’m so sorry about that but unfortunately they don’t care about people and I see a lot of people having side effects and that’s really sad. We need choices. We shouldn’t be told we have to take something. There’s no more choices. They should bring back the three or four so that we can at least choose what we want.We are stuck with this and it may be better than nothing, but I’m not even sure of that. I’m trying to see if it is. It’s only morally good and right for the world to have another choice, especially the original medication for this illness. It worked it had no extra additives and it had no side effects. Unfortunately, the current firdapse does. But I feel stuck and unable to make my choices because of what’s happened sadly.
I will continue taking it. The doctor prescribed it but we all know it’s not the same. I will take it until it kills me I guess. Because I would prefer the one that really worked.
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I’m sorry you aren’t doing as well on Firdapse as you did on Ruzurgi. I’m not either, and it’s frustrating to know Ruzurgi exists, but we can’t utilize it. Take care and hang in there.
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I’m so sorry you are having such a hard time with the Firdapse! I was not able to try the 3,4 DAP unfortunately, so I am unable to speak to the effectiveness of it. I have heard many LEMS patients experiencing what you and @Ginny.Boynton are reporting.
I agree its disappointing that we are unable to choose. Sadly, I feel there is nothing we can do aside from waiting it out. The orphan drug act gives exclusivity to Catalyst. I hate to get wrapped up in all of the politics of the two because frankly it stresses me out. Currently I am not taking Firdapse because I am breastfeeding and without studies I’m not willing to take the risk of it affecting my child. I took firdapse with my first pregnancy and unfortunately had a miscarriage at 10 weeks (we aren’t sure why).
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Thank you so much. Apparently anybody who’s had the good stuff it’s been several years ago. I have no choice but to take this to get a little teeny bit movable. My doctor would love me to have the original cause he saw how excellent I was doing. Everybody’s got their hands tied because a big company decided to take control of our health. Our doctors and we should have that control not them.
It must be very difficult to be pregnant with this situation. That concerns me quite a bit. These people need to know that there are problems happening from this drug. It’s really not OK. I can’t just sit by and twiddle my thumbs. I have an appointment with my neurologist at Mayo in a few weeks. I will discuss this with him. I wish you the best and I wish I could help you. I think many of us should get together somewhere. But we don’t know where we live, but I think that would be good in person. You take care of yourself and all the other people who don’t do very well because they’re not being treated carefully with the right med from their dock. Take care.
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@Julie I agree it’s a tricky situation!
When I had my miscarriage in 2023, Catalyst was notified as I stopped taking the medication. I had also agreed to join the pregnancy registry and had to notify them that I would no longer be able to. Luckily, my second pregnancy and delivery went without issues and I have a healthy, happy beautiful boy!
I hope your appointment at Mayo goes well and you get the answers you are looking for!
Thank you so much for your kind words and well wishes! I wish you the best as well and will be following up to hear how your appointment went!
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Hello, LEMS friends – I’m in the early days of Firdapse. Titration day 4. This morning I took the first 10mg dose and was it ever frightening! Thirty minutes after ingesting, I felt a wash of strange feelings come over me. Mostly jittery, then, tingling and numbness around my mouth/face. It’s been about an hour now and that feeling continues around my mouth, but to a lesser degree. I’m so hopeful for this medication to ‘work,’ but if this is what happens every time I take it… I don’t know. Any guidance for me? Hope we will all have a strong and happy day! – Karen
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The tingling and strange feeling around your mouth and nose is a commonly reported side effect. I feel it at times, generally at higher doses like 20 MG (maximum single dose) and even sometimes at 15 MG. It usually fades within about 30 minutes. I agree it does feel a bit off putting, but I’ve taken the trade off of feeling better with LEMS. And I don’t always get it. I almost never have it with the first dose of the day, but usually experience it with a later dose. I space my doses about 4 hours apart. Good luck with your titration to find an effective dose for you.
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I took 3,4 Dap for about 6 weeks and like Linda felt way worse than baseline. I had the expected tingling of my face, but my POTS got drastically worse. I developed terrible Long QTs and had a suspected seizure episode. So obviously Dr. discontinued me off it.
For me personally, it did not improve my lems symptoms at all before stopping. Not sure if 6 wks was long enough to garner benefit, but I definitely experienced severe side effects sadly.-
Sorry to hear your experience with Firdapse was less than ideal and you had to DC the med. In fact the Q-T interval was watched very closely during the drug trials, and a known possible issue. Also a suspected seizure would be a disqualifier as well. We are each different, but it’s good that at least you gave it a trial.
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I started on 3,4 Dap in 2014 on a trial basis at OHSU and then started on Firdapse in 2019 when that became available. I continue to experience the numbness and tingling around the mouth and have vision events such as blurriness and trouble focusing at times but rather than LEMS progressing for me, the Firdapse has greatly improved my quality of life. I was ready for a wheelchair and was using a cane before the 3,4Dap and was falling but my ambulation and mobility have improved to where I can now take short walks of 1/2 Mile or more a few days a week. I use a cane still for my walks for support. I still have weakness in my trunk area and legs and potential for falling but there is so much improvement with the drug. I take seven 10 mg tabs/day, 2 hrs. apart, the first one not helping much but from then on, I get going with more energy and strength for the day. The firdapse has certainly made a big difference in my activities of daily living.I call Firdapse ” my go pill”.
Because of the LEMS, I deal with constipation often for a good period of
time, does anyone out there have that same problem and do you have any suggestions as to what has helped you?
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Dorothy, I’m glad Firdapse has been so good for you, despite the side effects. I too have GI motility problems on occasion. When I do, I start adding a little Miralax (or store brand) to my water until the issues resolve.
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Dorothy,
For my constipation, I take generic colace 3 times a day and I am as regular as can be. (I purchase the Member’s Mark stool softener at Sam’s Club or Amazon. It is a good value.)
David
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Thank you, LEMS friends, for your responses! It is so comforting to not feel so alone in this new journey. I’m on the fifth day of Firdapse, 10 mg, this morning and no tingling/numbness this morning. Little jittery and eye blurriness, but I can handle that with the energy it gives me to walk up and down my condo’s stairs AND play with the grandkids.
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Karen, I’m glad to hear you may be nearing your happy place with Firdapse. Keep on! I occasionally tweak my dose by starting my day with a 20 MG dose. I keep my daily prescribed limit of 60 MG by making the last evening dose 10 MG. This works for me when my day starts off rough. I’m not recommending you try this, but it’s what has been effective for me, and never going above the maximum single dosage allowed and keeping to my daily limit.
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Thanks, Price. I’m on the 10/10/5 today. Before any medication (Mestinon or Firdapse), I’d awaken with leg weakness most days. Now, my leg weakness worsens towards evening. Maybe the titration. I have so many questions on LEMS and how it affects others of us. I question my diagnosis, since I know so little of this disease!
Off topic: Is there a way to get email notifications for forum message responses? Thanks again!!
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Glad you found the check box! LEMS can be crazy. I can feel great one day, then have problems the next. Lately I’ve been having muscle weakness in my left shoulder. Severity varies day to day, hour to hour. Learning the day to day ups and downs with treatments is an ongoing self-education.
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Just found the little checkbox for Email notifications! Yay!
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Hello from Canada. I have been on ruzurgi/Firdapse since June of 2020. It has allowed me freedom to get up in the morning. I take 20 mg before I get out of bed and wait for about 1/2 hour for it to work. I then take 15 mg at 4 hour intervals during the day. It has been a miracle drug for me.
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My experience and dosing with Firdapse has been similar. I often start my day with the maximum 20 MG dose to kick start a rugged morning. Never been to Canada, but I’m an amateur radio operator and make frequent radio contacts up there from Texas!
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My wife began Firdapse about two weeks ago. Her starting point was being unable to swallow, sit up, walk, or just about anything. She came off a ventilator about 4 weeks ago and had already had IVIG, Mestinon, and was on Prednisone when we applied for Firdapse. Since she has started Firdapse she has made a lot of progress. She can sit up, and help me when I have to pick her up to move her to the pot, bed, and chair. We are at 10,10,5 dose level. Our situation is we must stay with Firdapse as there is nothing else. We have not had any side effects we can blame on Firdapse as she has upset stomach, and such from being fed through a peg to her stomach. We are hoping she can pass a swallow test in the next couple of weeks so she can eat normally. By the way, thanks for this site and forum for LEMS as we don’t feel so alone.
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@ptribbey Patrick it does sound like your wife is coming off a myasthenia crisis. Glad to hear she’s off the vent and improving. Regarding Firdapse, you should discuss with your neuro about finding a good therapeutic level with Firdapse by titrating. I believe there is discussion about titrating on Firdapse.com.
If she on a total of 30 mg a day it’s possible to go up if needed. Maximum daily total can go to 80 mg at the top of the range. She may need to feel her way along as she recovers. Discuss with your neurologist.
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We have discussed with our neurologist and we plan to hold at 30 mg per day until we can assess if and how much to increase the dose. Reading the forum it seems many people are at 60 mg as a final dose level. We hope we don’t need to go that high but it is what ever it takes. The neurologists at Avera here in Sioux Falls, SD are first rate and I can’t say how happy we are to have them. They were able to determine LEMS in about 6 weeks where I have read others have taken years to determine LEMS. Right now we are at 5/10/10 and although we have experienced improvement we are far from anything close to normal. Question, how long does it normally take for Firdapse to accomplish what ever improvements it is going to do? We are still taking Mestinon, and Prednisone, and our doctor is planning to do a booster IVIG down the road. Understand my wife nearly died so the road back will be long.
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@ptribbey Yes, LEMS Will be the long road, but with a good treatment plan it can be managed. I’m glad you are happy with your team, because that can be a trial, and that she was diagnosed quickly.
I expect my Firdapse dose to kick in within a half hour and expect to to last for 4. Hence the Q4 (every 4 hours) dosing schedule. You should be able to evaluate the Firdapse regime fairly quickly and ask for a bump up as needed. I wouldn’t draw this out too long, but it will be in conjunction with your neurologist.
Mestinon is good and worked for me. Anecdotally many take their Mestinon dose along with their Firdapse for effect.
I understand that steroids are a powerful tool in the medicine chest, but educate yourself about their side effects with long term use. This is a discussion with your neurologist too.
And then there are immunoglobulin infusions which many of us do. I won’t go into it here, but it’s also an effective part of my ongoing plan. You might ask your neuro about this as well. Keep us posted!
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I am not taking Firdapse. I am taking Ruzurgi and have been on it for over a year. It took a few weeks to adjust the dosage, but I take 20 mg four times a day. I do not notice any lag time waiting for it to “kick in” . I do get the tingling sensation around my mouth and my nose gets cold. Also, I have had a runny nose since I started the medication. No stomach issues. Sometimes at night my vision gets a little blurry. I still get a little wobbly at times, but before Ruzurgi I thought I would be in a wheelchair for the rest of my life. This medication has changed my life.
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Hello there, so where did you get Ruzurgi? It’s pretty much the same as 3,4,DAP. I would like to get some of that. I don’t know if it’s available though I was told it wasn’t. And compounding doesn’t work. I’ve had this illness for over 40 years and it worked just beautifully with the DAP.. I was in the trials.
It is quite clear to me what firdapse is doing I’ve read the ingredients. I know what it’s doing to me. I’ve had this long enough to know every little detail
I could write a book on this. I feel that we should have the choice of getting the original back. However, if that happened, I suppose you couldn’t sell your Firdapse as well because it doesn’t work as well.
This is a severe disease and we’re all going to die without the good medicine. And that’s really sad. But I have to take it because I have no choice because if I didn’t take it, I wouldn’t be able to move.
So at least I can move right? I’m so sorry this has happened. I wish that people would consider humanity and life and living and not worry about the greed part of things.
I kept all sorts of records and documents from those days times have changed, unfortunately. But it is what it is so I continue onward.
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Hey @Julie it looks like @Anngail Norris posted this reply back in 2021, I’m not sure if she’s still able to receive Ruzurgi.
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Thank you, Ashley. I don’t believe so. You’re probably right unfortunately that was around the time they removed anything that resembled the original and that was one of them. I am having a very difficult time with this and I imagine other people might be as well all over the world who don’t even go on this particular Forum. I was talking to people in Australia before and they couldn’t get it either. All I know is that it’s restricting us from getting better. And that’s not OK. And honestly, the people who never had the original don’t even know how wonderful it was. And that’s a shame and maybe that’s why they don’t want it out there. I don’t know, but it’s unfortunate to say the very least and I appreciate your comment. Thank you very much.
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In Australia there is a pharmaceutical company, Lacuna Pharmaceutical, which has Ruzurgi available for patients. In Canada, Medunik Pharmaceutical has Ruzurgi available.
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@Ginny.Boynton Wow! Thank you for the information! I wonder if we are able to access it as well somehow!
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@Julie No problem! I’m sorry I couldn’t help you more!
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Hi @anngailn
I’m so happy to hear that you have had a lot of improvement with Ruzurgi. Thanks for sharing with us!-
Please know that Ruzurgi is another name for the original 3,4, dap
It must be available to us again!
You have banned something that was helping people. How does that feel?
I can tell you from my own experience there’s no side effects and it works perfectly. I was in the study originally and we were all in touch for many years and we had no problem with that medicine. In fact, every one of us it had helped immensely.
Did you ever hear of the phrase “if it’s not broken don’t fix it “? Well that’s what happened here— you tried to fix something that was perfect and it can’t be fixed.
I’m very disturbed that we cannot get what we need..
I have to take the firdapse because if I didn’t, I wouldn’t be able to move, but it barely helps the way the original one did.
And I believe that there has to be something done here immediately because we cannot get much help from the current drug.
We must be able to get what WORKS! DAP/Ruzurgi—-
It is inhumane not to give it to us. It’s cruel and it’s abuse. We need it. This is not OK.
Some people don’t even know how great it is because they never got it. Maybe that’s what you’re trying to hide from them.
Hopefully you’ve already made the amount of money you want from the firdapse. You have restricted the use of the original because you want control and power in this. I know you watch the stock market.
This is not for financial gain time. This is for human life .There are many of us who can’t function very well.
Come live with us a bit and see what we can do and what we cannot do.
Come see how our families are suffering and how all the people around us are as well because we are more handicapped than usual because of this.
If you want to be a hero, give us back the original 3,4 dap/ruzurgi.
Please consider compassion, care and love for your fellow humans.
How about that?
I am very sorry to be reading there are so many side effects and so many people being affected negatively.
I understand because I’m one of them and I want to help my fellow humans.
The original small Jacobus pharma was family run and only wanted us to be able to function well and they cared. We received the med as compassionate use. Thank God for these people. They also get harmed by your intervention.
So I guess you’re enjoying your big business even though it’s hurting us. Frankly not sure how you can sleep at night :’(
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Thank you, Ashley.
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I just bumped up to 20mg Firdapse. The side effect is reasonably scary. Double vision, numb face from nose down to chin. At 15mg it wasnt like this. I’m thinking of going back to 15mg. 15mg worked fine. It got me off the walker in the house and dont have the pain and weakness in my legs and arms. In the long run is 20mg part of the end result to being half way normal again? I will call my Neurologist tomorrow to see if he knows anything
I think he is learning along with me.-
@marym Hi Mary! The maximum single dose of Firdapse is 20 MG, 80 MG per day. This is per the drug fact sheet. I sometimes get the frequently reported tingling and numbness, around my mouth and nose. It’s an odd feeling. I don’t particularly like it. My scrip is 15 MG 4 times a day, generally every 4 hours. Often now I do a 20 MG dose to start my day, two 15 MG doses, and end my evening with one 10 MG dose. This works well for me and I generally don’t have a reaction with that first 20 MG loading dose of the day.
I stress this is my personal regimen, and we each are different. Firdapse is also only a part of it. I hope you and your neurologist will find a good regimen for you!-
I forgot to mention. I went without Firdapst for 2 days and went back to original symptoms not able to lift my arms and legs being weak and loosing my voice. Have extreme pain.
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@marym yikes! I guess that illustrates how important it is in your treatment plan. I have been lucky to not run out, but for a period the VA was slow on monthly approval, and I would sweat out each delivery to almost the last day. It was very stressful.
I hope you can keep your supply going and delivering in a timely manner.
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Thank you so much for sharing your experience. I was down for 2hrs. My whole face went numb Finally got to speak to my doctor. He was confused or just not listening. Anyone who tried to take my message couldnt identify what I was talking about. He said I should go back to prior dosage. I’m going back to the 15mg for awhile more. If I find I have to do more or even less it is good to know. My impression is Firdapst is last to do and i don’t want my body to get immune to higher doses. I finally got relief.
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It was my fault. I wanted to confirm that my insurance would pay for last month. It took too long. I’ll be on that faster this month
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Has anyone tested with elevated liver enzymes? I have had one double snd one triple in 5 months. The report from the Firdapse trials did report 14% of participants experienced this. I was told to take milk thistle by a PA and did not get a reply from my neurologist with this concern. Has anyone else had this issue? Not sure how worried I should be. I have been on Firdapse 10 months.
I also have very heavy legs and back when getting up from a sitting position. Is this a normal part of LEMS?-
@dhmc I can’t speak to your liver enzymes, which Joanne has, but I have experience getting up from a sitting position when you have LEMS. Before being diagnosed, I had a very bad weakness episode that put me in the hospital for 6 days. Not only could I not walk, I couldn’t rise up out of a chair. I could only get out by using my arms to push myself up and out. The inability to do that lasted for some time after I left the hospital and was a definite marker of severe muscle weakness in my hips, ultimately tied to my LEMS. I hope this helps.
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I have had very high liver enzymes counts but my neurologist thought it was from taking azathioprine. I have stopped taking it and now I am presently on 60 mgs of firdapse and 180 sr mestinon twice a day. My counts are better now.
Good luck
Joanne Evans
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I hopefully will be transitioning to Firdapse some time late next week? I’m currently on the last supply of Rizurgi 20mg 4x day.
Has anyone gone through this transition? I am hoping that it is a smooth transition. I do know that I will loose my strength for sure if I have to go cold turkey and I am terrified.
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@michm7270 no one likes the uncertainty of possibly missing doses of any of our meds.
If you haven’t, please contact Catalyst Pathways to begin the process immediately.
https://www.yourcatalystpathways.com/
I’ve spoken with Catalyst a number of times on this, and I can assure you they don’t want patients missing doses. They want to make the transition as easy as possible.
I believe you and your neurologist will need to complete some paperwork, and you can get that going by contacting Pathways. They have a number to call when you go to their webpage.-
Application has been submitted and is currently under review. I was curious of the transition from Rizurgi to Firdapse if there were any issues. If anyone else is going through this? Does Firdapse work as well, better or worse then Rizurgi? Just looking for experiences so I can get an understanding on what to expect.
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Well I just went to a Neuromuscular Specialist yesterday. She is out of the U of W in Seattle. I really like her. She has experience with LEMS and had an agenda for me immediately. I am confused and scared. She is doing 3 new blood tests ANA, EIA, Reflex. I have had a CT of my chest but she wants CT’s of my abdomen and my Pelvis and wants to do all 3 CT scans every 3- 6 months. I still have to do my PET SCAN She wants to do a Repetitive Nerve Stimulation. Has anyone had the Nerve Stimulation test? She said it hurts but she would stop if I couldn’t stand it. Then she wants me to go on Firdapse. I am scared because I have COPD and I heard you get Resp. Infections with this drug And poss seizures. I don’t want either of those things. Here is why I am confused. I just started on Mestinon about a month a go. I don’t feel excellent but I do feel so much better than I did. I am walking more and was able to stand pretty much all day and cook for my grandson. Should I start the Firdapse if I am feeling OK with the Mestinon. Please let me know what you think. I love this site. You all have helped me mentally more than you will know.
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Hi Debbie! We’re so glad you’ve found a good neurologist you are happy with. An initial PET scan and repetitive CT scans are all part of the protocol, looking for cancer. If you’ve done some research on LEMS you are aware that roughly half of LEMS cases are triggered by an underlying cancer, most typically SCLC. Ironically, most LEMS patients do better against this cancer than the general population.
Mestinon was my first medication given as well. I had a response to it, but it wasn’t enough in my case. We then added immunoglobulin (antibodies therapy) and Firdapse.
Only you and your neurologist can decide whether to add Firdapse to your treatment plan. When starting a new drug, I always read and research the possible side effects. Your neurologist most certainly has. The risk reward consideration is yours to make. I’ve been on Firdapse for years, have COPD myself, and have had no issues with Firdapse.
You should definitely get the EMG you doctor wants. There can be some discomfort, but it’s worth it so your doctor can better understand and assess your LEMS. We do what we must. It’s all part of being your own best patient advocate.-
Thank you Price I needed to hear that
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I have had 3 repetitive nerve studies. It is a bit uncomfortable but not painful.
Firdapse has given me a chance to be mobile and allows me to have a fitness schedule in the morning. I am not so good later in the afternoon. I live in canada and the drug is very expensive so I limit my intake.
I have had a number of cancer tests. No positives yet but they keep checking. They think my LEMS is due to autoimmune deficiency. -
Thank you so much Joanne this was helpful to me . Petrified of the Repetitive Nerve Test
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I was on it for 3 weeks. Ice cold hands, brain fog, cold nose. It did help my nervous system in the beginning but the 4 1/2 hour seizure and a trip to the hospital put an end to it! Now just using medical cannabis.
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