Lambert-Eaton News Forums Forums Treating LEMS Firdapse and Ruzurgi (Amifampridine) FIRDAPSE side effects: Does everyone experience them?

  • FIRDAPSE side effects: Does everyone experience them?

    Posted by Dawn DeBois on January 2, 2019 at 2:00 pm

    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!)

    David1949 replied 1 year, 5 months ago 18 Members · 46 Replies
  • 46 Replies
  • Linda

    Member
    August 15, 2020 at 7:05 pm

    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

  • Price Wooldridge

    Member
    August 15, 2020 at 7:27 pm

    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.

  • Rafael Flores

    Member
    August 19, 2020 at 7:30 am

    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.

  • Ashley

    Member
    August 19, 2020 at 7:36 am

    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!

  • Karen Foshee

    Member
    January 8, 2021 at 9:43 am

    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

    • Price Wooldridge

      Member
      January 8, 2021 at 12:55 pm

      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.

  • RDT

    Member
    January 8, 2021 at 2:30 pm

    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.

    • Price Wooldridge

      Member
      January 8, 2021 at 3:50 pm

      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.

  • Dorothy Dempsey

    Member
    January 8, 2021 at 5:04 pm

    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?

    • Price Wooldridge

      Member
      January 9, 2021 at 1:29 pm

      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.

    • David1949

      Member
      January 27, 2023 at 2:18 pm

      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

  • Karen Foshee

    Member
    January 9, 2021 at 10:48 am

    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.

    • Price Wooldridge

      Member
      January 9, 2021 at 1:38 pm

      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.

  • Karen Foshee

    Member
    January 12, 2021 at 11:48 am

    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!!

    • Price Wooldridge

      Member
      January 12, 2021 at 4:46 pm

      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.

  • Karen Foshee

    Member
    January 12, 2021 at 11:55 am

    Just found the little checkbox for Email notifications! Yay!

  • Joanne Evans

    Member
    January 12, 2021 at 12:06 pm

    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.

    • Price Wooldridge

      Member
      January 12, 2021 at 4:42 pm

      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!

  • patrick tribbey

    Member
    May 8, 2021 at 10:25 am

    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.

    • Price Wooldridge

      Member
      May 9, 2021 at 4:14 pm

      @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.

  • patrick tribbey

    Member
    May 9, 2021 at 4:35 pm

    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.

    • Price Wooldridge

      Member
      May 10, 2021 at 9:23 am

      @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!

  • Anngail Norris

    Member
    May 11, 2021 at 3:02 pm

    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.

  • Ashley

    Member
    May 12, 2021 at 8:08 am

    Hi @anngailn

    I’m so happy to hear that you have had a lot of improvement with Ruzurgi. Thanks for sharing with us!
  • Mary

    Member
    July 7, 2021 at 3:51 pm

    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.

    • Price Wooldridge

      Member
      July 7, 2021 at 4:27 pm

      @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!

      • Mary

        Member
        July 19, 2021 at 5:04 pm

        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.

        • Price Wooldridge

          Member
          July 19, 2021 at 7:24 pm

          @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.

  • Mary

    Member
    July 7, 2021 at 9:12 pm

    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.

    • Mary

      Member
      July 19, 2021 at 7:54 pm

      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

  • DHM

    Member
    July 10, 2021 at 8:12 pm

    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?

    • Price Wooldridge

      Member
      July 11, 2021 at 5:19 pm

      @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.

  • Joanne Evans

    Member
    July 11, 2021 at 9:00 am

    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

     

  • Michele Quier

    Member
    February 25, 2022 at 3:30 pm

    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.

     

    • Price Wooldridge

      Member
      February 25, 2022 at 4:56 pm

      @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.

      • Michele Quier

        Member
        February 25, 2022 at 5:00 pm

        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.

  • Debbie Hammer

    Member
    January 14, 2023 at 9:03 pm

    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.

    • Price Wooldridge

      Member
      January 15, 2023 at 10:14 am

      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.

      • Debbie Hammer

        Member
        January 16, 2023 at 12:22 pm

        Thank you Price I needed to hear that

  • Joanne Evans

    Member
    January 14, 2023 at 9:37 pm

    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.

  • Debbie Hammer

    Member
    January 16, 2023 at 12:24 pm

    Thank you so much Joanne this was helpful to me . Petrified of the Repetitive Nerve Test

  • Brian Herres

    Member
    January 18, 2023 at 2:23 am

    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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