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  • Radicava and side effects

    Posted by Paul Kokott on July 23, 2022 at 1:28 pm

    Ten months ago I was diagnosed with having ALS, I also have COPD. I’ve been going to the Froedtert ALS Center in Milwaukee, since my diagnosis. I’ve had to make many changes, such as living alone to living with my family, walking unassisted, to using a cane, and now a walker. I’ve made peace with myself, and have accepted that I have this horrible disease. Just recently my Doctor put me on the new Radicava ORS drug. I finished taking the starter kit (14 continuous days), and noticed some things changed in my health, while taking the drug. I can no longer use a cane, and my walker is difficult at times for me. I went from being short of breath after exerting myself, to being out of breath just sitting in my recliner. Has anyone else experienced these things? Do they get better after I get used to the drug? Do the side effects disappear in between the dosing regiments? Thanks in advance for your input.

    Tara replied 1 month, 1 week ago 22 Members · 30 Replies
  • 30 Replies
  • Richard Maloon

    Member
    July 26, 2022 at 3:49 pm

    I was diagnosed with ALS about 2 years ago and immediately put on riluzole.  A week ago my ALS doctor and I decided to add Radicava ORS.   My present ALSFR is 43. I do breathing exercises that help. I have lost control in my left hand and about 50 plus loss in my right. I still drive but have a hard time getting in my truck. I use a “suicide knob”. I bought an electric scooter. Most ALS patients have a respiratory failure within 3 to 5 years. My doctor does not expect a reversal of symptoms no matter what. The best I can expect is I decline less rapidly.  Look for “Dagmar” on this forum. I believe she is a 10-year survivor.

    If approved, I could start taking both drugs by mid-August. I am a patient only.

    Richard

    • Paul Kokott

      Member
      July 27, 2022 at 2:37 pm

      Good luck to you Richard.

  • AA20

    Member
    July 26, 2022 at 4:57 pm

    What kind of exercises do you do Richard?

    • Paul Kokott

      Member
      July 27, 2022 at 2:39 pm

      Good luck to you Robert. I too am on Rilzole.

  • Robert

    Member
    July 26, 2022 at 4:57 pm

    I am going to start radacava next week. I am presently on riluzole. At this point I am willing to try anything. I have been getting worst.

  • Sandy

    Member
    July 27, 2022 at 10:37 am

    I have been on Radicava over four years with no side effects. Still able walk with rollator, eat and talk. Slow progression. Thank goodness. So I would say it a try.

    • Paul Kokott

      Member
      July 27, 2022 at 2:41 pm

      Thank you Sandy. I’m going to continue to take. Hopefully the side effects will taper off.

  • Richard Maloon

    Member
    July 28, 2022 at 7:13 pm

    the only exercise I do is for my lungs, and I simply breathe in deeply expanding my stomach and exhale while puckering my lips to make it “hard” to expel the air. 25 times 4-8 times per day. You can buy a device where you can measure the pressure, but this has worked okay for a couple of years.  I will try riluzole and radicava simultaneously if things go as expected in a couple of weeks.  why not do both? My health plan pays for riluzole. I move like a sloth, no pain can’t do ordinary tasks. slow progress to date. lots of l -serine. that is my story. research end-of-life alternatives.

     

    r

     

  • bill-osullivan

    Member
    August 4, 2022 at 7:00 am

    Hello, I am new to the forum however not new to ALS. Unfortunately our family has the familia version of ALS so I know the progression and outcome only too well. First symptoms 3 years ago when diagnosed doctor put me on Riluzole and daily anti-oxidant cocktail of several over the counter items. Not sure if this is something others are doing. I can share the list if needed.   I started Radicava ORS on Wed two days ago, so far so good. Watching for anticipated FDA approval of AMX0035 a plan to add that to my drug list.

  • Susana Rave

    Member
    September 7, 2022 at 2:09 pm

    I was diagnosed 3 years ago and right away was prescribed Riluzole.  Last Saturday I started Radicava ORS and have tolerated it well so far.  According to the pharmacist who I spoke with prior to taking the Radicava said the side effects could be headaches, fatigue and bruising easily.  I have not experienced any of these so far but I am only on day 5.  Hopefully, this medication slows my progression further.  Currently, I walk with a walker, and can still take care of myself – showering, dressing, light cooking, although my hands a weakening.

    I am also taking 1000mg of Tudca, one of the elements in AMX0035.

  • john hamilton

    Member
    September 9, 2022 at 7:25 am

    Just completed the first 14-days of Radicava doses. Ugh! Tastes like gasoline! No apparent side effects…well, maybe my walking’s a bit more wobbly. I’ve got the bulbar-onset version of ALS and have rapidly lost my ability to speak legibly. Just as well, for some, I suppose. Was 206, now, a year later, 176, but not ready to get PEG’d yet. Oh, and I’m taking 2 gms a day of TUDCA (synthetic bear bile, I read), and of course the Riluzole.

    My spirits are still pretty good. Had a good life. And being 81, I’m just just glad to still be kicking. I could moan about not being able to do road-bicycling now, or take nice long walks in the woods, or no longer able to do push-ups, but I won’t.

    Coincidence, I’m sure, right? But seems strange how I developed ALS symptoms shortly after having a mild case of COVID. Anyone else?

    • Deelight

      Member
      January 11, 2024 at 4:24 pm

      I developed my symptoms of bulbar als shortly after my first covid vaccine. Slurred speech and now 3 1/2 years later, I can barely speak at all. I have slow progression. So yes , I believe there is a correlation.

  • Caroline Assmann

    Member
    January 4, 2024 at 6:02 pm

    Medicare does not pay for Radicava or Relyvrio? I still use my COBRA insurance at $1000 a month and they pay the majority of the Relyvrio. Denied the Radicava. Us it really worth keeping?

    • Roman

      Member
      January 11, 2024 at 9:49 pm

      Caroline

      I have United Health Care insurance (Obama care) also I pay 1,000 dlls/month but it covers radicava and relyvrio

  • Roman

    Member
    January 4, 2024 at 8:01 pm

    I have 1.5 years using Radicava ORS. Iam sure it helps me to slow the progression of the disease with no side effects.

  • Denice

    Member
    January 17, 2024 at 6:26 pm

    I was diagnosed 8/2023 with ALS and began taking Riluzole. Two months later I started Radicava. The only side effect I have noticed is being more tired when I am taking Radicava. I started Relyvrio 12/23. About 10 days into the single dose per day, I began horrible stomach pain, bloating and loose stools. This worsened and after 5 weeks, my doctor, pharmacist and I decided to stop using Relyvrio. I’m thankful to still be taking 2 of the 3 R’s.

    Denise

  • Charlotte

    Member
    January 18, 2024 at 5:32 pm

    Was just prescribed Radicava and riluzole but haven’t tried either yet. I understand that Radicava can cause worsening of asthma so it may act similarly with COPD. Check with your doctors!

    I tried Relyvrio but discontinued when dizziness increased my fall risk. Also due to start Nuedexta for pseudo bulbar affect. It’s said to help with speech too. I hope!

    • Tara

      Member
      January 25, 2024 at 8:01 am

      Charlotte, I noted your comment about Neudexta. I also have bulbar onset, have the speech issue but do not have the emotional component. My neurologist says that it’s unlikely I can be approved for the drug because of that. What has been your experience in that regard?

      • Charlotte

        Member
        January 25, 2024 at 5:17 pm

        Tara, I just started it today. No effect yet of course. I have pseudo bulbar affect, laughing or crying uncontrollably )fortunately mostly the former). My bulbar symptoms are secondary to my limbar ones. I’ll try to remember to report back if/when I notice a difference the Nuedexta makes. I’ll be starting Riluzole next week and Radicava sometime after that, separating the starts enough to check for side effects before starting the next med.

      • Charlotte

        Member
        February 29, 2024 at 3:44 pm

        As a follow-up for Tara, regarding Nuedexta, After a week of one dose a day, I noticed a marked improvement in the pseudo bulbar affect—better control over emotions and improved speech quality, among other things. However, I also experienced increasing headaches to the point, after 3 days of mild discomfort that I was hit with debilitating migraine. Ultimately I had to discontinue the Nuedexta, at which time its benefits became really obvious as they fell away. I would love to be able to use it, but quality of life won out!

      • Tara

        Member
        March 16, 2024 at 8:14 pm

        Charlotte, thank you so much for responding to my post. I really appreciate that you made the effort to give me 2 responses, pre- and post. Thanks again!

  • KICO

    Member
    January 18, 2024 at 9:20 pm

    <font style=”vertical-align: inherit;”><font style=”vertical-align: inherit;”>Buenas Noches, me diagnosticaron ALS, hace un año, pero inicie con los síntomas 6 meses antes, que se fueron agravando, desde el inicio del dx, inicie tomando Riduzol, no vi efecto alguno la progresión siguió, continuo tomándolo, en septiembre inicie a tomar Radicava, al mes note una mejoría sustantiva en la movilidad, flexibilidad de mis músculos, en noviembre inicie a tomar Relyvrio, tengo una progresión lenta en el avance de acuerdo a la escala, todavía puedo hablar, camino, mis brazos están debiles pero los puedo mover, comparto lo anterior porque creo que la combinación de medicamentos esta teniendo buen resultado en hacer mas lento el avance,</font></font>

    • Roman

      Member
      January 26, 2024 at 12:05 am

      Kiko

      Comparto contigo lo que dices, a mi también me resulta más lenta la enfermedad con las 3Rs. Desafortunadamente he tenido neumonia, covid, gripe, bajo de peso . Y es ahí, cuando estas débil la enfermedad avanza.

      Saludos

  • Beth Gabel

    Member
    January 26, 2024 at 6:52 am

    I took Radicava for about 2 months. So 2 full doses. It made me feel weaker and my skin was peeling off my hands and had a rash on the back of my neck. The biggest concern was the peeling causing open wounds or infection. I stopped taking it and I felt better. I had reactions to Relivryo and Riluzole as well. Riluzole made me weak and tired. Relivryo made me sleep 18 hours a day. It wasn’t worth it in my opinion.

  • Optimist

    Member
    January 30, 2024 at 5:49 pm

    I am truly sorry about your diagnosis. My brother was diagnosed over Christmas 2022. He recently discontinued both Radicava and Relyvrio after taking them for almost a year. The reason he did is that he felt he suffered side effects (severe bowel blockages in his case) but saw little evidence that the medication helped slow the progression of the disease. I will also say that the digression in your abilities as you posted them is very similar to his. I do not think the medication accelerated the progression, but he did not feel it slowed it either.

  • David McNally

    Member
    February 29, 2024 at 4:05 pm

    (My first post). I was diagnosed with ALS in December 2019, although my symptoms (trouble buttoning buttons with my right hand) started a year earlier. A present, I have no use of my arms and hands, my legs are weakening quite rapidly (that started less than a year ago), I have” Head drop” so wear a neck collar all the time, and in the last few months I have started to have some difficulty swallowing effectively.

    I took Riluzol several years ago, but stopped after a few months because my liver enzymes were spiking. I have taken relyvrio for more than two years, and Radicava for nearly one year. The good news is that I am experiencing few if any Side effects (sometimes itchiness on the head, and some fatigue, although that may be just a standard side effect of ALS itself). The bad news is that I have absolutely no idea if either or both of these medication’s are having the slightest beneficial effect. My neurologist does not believe there is any”Additive” benefit of taking both medication’s versus just taking one or the other. But I take both because I have extremely generous health insurance (with a sticker price of $14,000/month for each medication, I could not begin to afford taking either one where it not for my generous health insurance). I am 79 years old and have had a very good life, so I do not expect to remain above ground one more than another three years and most (although my fabulous wife would prefer that I be able and inclined to live longer). David

  • Amanda

    Member
    March 1, 2024 at 9:24 am

    All of this information and sharing of experiences is so informative. Thank you for such a great discussion post!

    My insurance will not approve Relyvrio until, and I quote, “other treatments have proven unsuccessful..” It’s hard not to laugh at the wording. My first thought was, “What evidence do they want?” We will just leave that one unasked/answered. The company sent me the first months supply – and now that my insurance has turned it down numerous times, I have to fill out a grant application in order to continue the medication.

    I don’t complain about it. My insurance is covering Tofersen (which is making a huge difference), Riluzole, <b data-test=”prescription-list-2-card-0-title” style=”font-family: inherit; font-size: inherit; color: var(–bb-body-text-color);”>Baclofen for cramps.

    My doctor did think that Radicava is beneficial to me.

    I was interested in the average cost of ALS meds and found this on the web. I know this may vary from site to site, and insurance will vary with copays and prices.

    The most common drugs used to treat ALS are riluzole (Rilutek) and edaravone (Radicava):

    • Riluzole is the only FDA-approved medication for ALS. It is typically priced at around $1600 for a monthly supply.
    • Edaravone is not FDA-approved for this use, but it is commonly used off-label. Edaravone typically costs around $145,000 per year.
    • Nusinersen is a newer medication that was approved by the FDA in 2016. It is priced at around $125,000 for an injection.
    • Nuedexta is a medication that is approved to treat ALS-related swallowing problems. It is typically priced at around $700 for a 30-day supply

    Biogen has set a price for its recently approved ALS therapy Qalsody (tofersen) at <b style=”background-color: var(–bb-content-background-color); font-family: inherit; font-size: inherit; color: var(–bb-body-text-color);”>$14,230 per dose. Given that 14 doses are required in the first year of treatment, that comes out to just under $200K for the first year alone, Endpoints News reported.May 2, 2023.

    With all this – there is also the income lost and additional expenses to consider. Wow, maybe I was better off in the dark 🙂

    Amanda

  • Debby

    Member
    March 1, 2024 at 12:18 pm

    I was “blessed” with diagnosis in December so its been about 2 months. started right away on radicava and whilw i havent SEEN any improvements, its been easy for me and no issues after the first week. tried relyvrio and could not take as its mixed with water which I cant swallow. and take nutexda/riluzol pills to help with speech – which is totally gone. in fact sound like the Gorn from Star Trek. still working through accepting this whole thing! and amanda – thanks for welcoming me.

  • John E. Mosman

    Member
    March 6, 2024 at 7:45 am

    Hello, I am a vet diagnosed in August,2022. Due to VA I have been taking the 3R’s (Radicava, Riluzole and Relyvrio for some time now. My progession is slow and only recently decided not to drive anymore, only becuase I worry more about falling getting to the car and less about my ability to drive.

    Along with a load of other drugs and vitamins, I am fortuante that my body accepts all these drugs without any problems. Relyvrio is not great tasting, but I am not having the reaction many seem to have with it. Worse is chugging eight ounces of water right before having a meal.

    This terrible disease sure has a wide varity

  • GregC

    Member
    March 7, 2024 at 4:03 pm

    I experienced balance and walking issues with Radacava. The literature that comes with the Radacava says that 10-15% of patients who take the medicine experience gait and balance problems. I use a power chair when I am out of the house but in my home I use a rollater. I quit taking Radacava after I experienced three falls in the house. After the first 2 falls I quit the drug for 3-4 months, then started up again, and experienced another fall. Those were the only falls I have experienced in the last 2 years. I consulted with my Dr and she agreed that I should not be taking the medicine as long as I was still walking. I guess I am one of the 10-15%. I will probably start again when I am in the wheelchair and walking is not an issue. I have not noted shortness of breath as an issue related to the Radacava.

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