Tagged: side effects, treatments, Vyvgart
- This topic has 22 replies, 18 voices, and was last updated 2 weeks, 4 days ago by Jerry Johnson.
February 5, 2023 at 2:41 pm #20712Jennifer ThompsonParticipant
Good Morning! My doctor is discussing Vyvgart with me and I am wondering about the respiratory and UTI risk? Has anyone experienced this happening? I know infection is a risk with a lot of treatments. I am just curious others experiences. Thank you!
February 9, 2023 at 4:14 am #20735LaniParticipant
I am going to begin treatment soon, and I would like to know the answers to what you asked as well.
February 9, 2023 at 4:36 pm #20733
I read side effects. Can be cancer since I have history I can’t have it
February 9, 2023 at 10:54 pm #20741GregParticipant
My neurologist recently prescribed Vyvgart as part of my treatment for gMG. I am currently taking Pyridostigmine and mycophenolate as treatment. I have had three of the four infusions and will have the fourth treatment administered this week.
Currently I have had no adverse reactions to the infusions and have experienced improvement even before completing the four treatments.
The clinicians have told me several times that their patients handle the administration of the infusions.
As far as to how long the medication is effective, I’m told I cannot get additional treatment until after a minimum of 50 days have passed. I’m hoping/praying the effectiveness lasts longer and there are negative side effects for me.
May 12, 2023 at 12:09 pm #21084paul spychalskiParticipant
Hi. Will Social Sec. cover the cost and treatment and how mucch is it $$. Thanks.
May 18, 2023 at 8:31 am #21102Marguerite ThibeauParticipant
Paul, you should always call your Insurance company to find out what your benefits will cover. Plans vary, where you receive treatment affects the cost. If you have Medicare A, B, D or C each section can vary, Sometimes you might need your provider to tell you what code they bill under. Vyvgart Pathways can help you get answers if calling your insurance leaves you with questions. https://www.vyvgart.com/
February 10, 2023 at 7:01 am #20742Carol WParticipant
I am taking Vyvgart along with Prednisone and Mestinon. I was diagnosed in April 2022 and received IVIG treatments for several months prior to being approved for Vyvgart. My first infusions were in August of 2022. Amazingly, I did not need it again until this month. I had my first of 4 infusions last Tuesday. Normal infusion time is between 50-70 days. I haven’t experienced any side effects mentioned (UTI or respiratory) My case manager with Vyvgart is very supportive and checks on me at least every month. Incidentally, I am a 2x breast cancer survivor.
I hope my reply is helpful.
February 14, 2023 at 2:13 am #20760RennaParticipant
I loved reading that you didn’t need another round of Vyvgart from August 2022 until February this year! I, too, got Vyvgart for the first round of infusions in December and was feeling strong and able to exercise again (cardio) but by day 30 post the 4th infusion, I started getting weak again so I just started round 2 infusions. The timing of the weakness was right after the intense workout so I am not sure if I caused it by overdoing the workouts or it was wearing off anyway. I hope my next round will hold a lot longer than 30 days!
May 12, 2023 at 12:12 pm #21085paul spychalskiParticipant
Thanks. Good luck and living.
May 19, 2023 at 3:33 pm #21114MikeParticipant
Three years now with MG. Last summer I got my worst flare-up ever (ended up hospitalized for 5 days) as a result of doing daily power walks (1 mile in 15 minutes) for a couple of months. I’m personally convinced that I must avoid strenuous exertion at all costs.
February 10, 2023 at 8:24 pm #20744Carlos A GalindoParticipant
Vyvgart is a great intravenous medication that helps me out tremendously on a daily. It is meant to be administered 4 times once a week and then go for 50 days without taking it. However, just like all other medications for individuals with gMG, it affect everyone differently. I was fortunate enough to be part of the Vyvgart study for 2 1/2 years in Portland Oregon, and right away I new it was for me. Unfortunately for me, I cannot go all the way to 50 days. The study required me to go back to the office after 30 day for evaluation and by then I was doing pretty rough. I never got a UTI, but my breathing was affected especially towards the end of the 20 day without period.
Now that it has been FDA approved I am starting to do a different regiment of it where it is administered 4 time once a week then followed by once every 2 weeks. I am extremely exited to see how my body reacts to this regimen.
My goal is to get off of some of the other meds I take, but we shall see. Currently, I take prednisone, mestinon, and mychophenalate in combination with the vyvgart. My side affects are minimal next to non. I might sweat more than normal, some headaches, and at times constant urination, but these are no comparison in dealing with the weakness. I wish everyone good health and much luck finding the perfect combination to alleviate your symptoms
May 15, 2023 at 8:43 am #21089TheresaGParticipant
I have been on vyvgart for a year now. I too found the hard way I cannot go more than 15 days post 4th infusion without crashing. I also find that each infusion/cycle produces a different response. Just has 4/8 yesterday and I feel like all I want to do is sleep and leg muscles super weak. I’m hoping tomorrow brings a new me as it has in the past. Being 69 and with chronic neck and back problems it’s always hard to identify the cause.
‘For those asking about side effects-
ive had 2 UTI’s in a year, and just the fatigue after some infusions. I began taking cranberry pills and none since.
as with all of these meds, stay hydrated.When I compare to a year ago it is a huge improvement. If I overdo I still suffer, just not as much. I gave not seen any literature about cancer. I would go to the Argenx website, contact them and ask directly. I had cancer in 2014 which is why I was unwilling to take cellcept.
February 10, 2023 at 8:29 pm #20746Mark HarringtonParticipant
I begin my third round of VYVGART next week. It has been a gem changer for me. I haven’t had any side effects. I do drink one glass of PURE cranberry juice 2X day. It is pure cranberry juice, not cranberry juice cocktail, or 100% Juice. It is bitter so I mix it with some sparkling water. Does it help? I don’t have any proof, but I haven’t had any UTIs. Good luck.
February 10, 2023 at 8:32 pm #20747PhillipParticipant
Following, I may be starting Vyvgart soon.
February 10, 2023 at 8:51 pm #20748Jerry JohnsonParticipant
I have been on Vyvgart for nearly a year now and have had no side effects from it. It has truly been a miracle drug for me.
February 10, 2023 at 9:55 pm #20749
I was told I can not have that infusion side effects of it ma cause cancer. Since I have a history of cancers I will not be able to get it 2 neruo told me that!
February 10, 2023 at 10:11 pm #20750Mark CoxParticipant
I’m 62 and was diagnosed 1 year ago with full blown MG symptoms that all exposed themselves over a two week period..
After 3 months of trying to find a a doctor to fully diagnose my MG, they started me out first on an IVIG of <span class=”s1″>Gamunex that work very well for me compared to Vyvgart. I Felt much stronger and less anxious from Gamunex but we couldn’t control the severe migraine side effects from the </span><span class=”s1″>Gamunex and it consisted of 3- daily infusions at the end of every 30 days.
Due to my job travels and working around 30 day infusions, I became more attracted to Vyvgart infusions on every 60 day intervals. Turns out most my MG symptoms was returning in 40-45 days so we moved it to every 50 days and all my neurologist will allow for now. I’ve also notice that I pick up colds and flu’s easier in that same 40 – 50 day period and learning to stay away from the public and travels during that time.
I have experienced both respiratory and infections symptoms that may be related to Vyvgart and have stayed in the hospital overnight twice in the past 9 months due to low oxygen levels when staying at my cabin at 7000’ elevation in Utah and I was put on home oxygen as needed which is mostly at night around any high elevations such as my cabin… My respiratory concerns also initiated a move out of our home in Utah County at 5500 ft elevation to less than 1000 ‘ foot elevation in Nevada. I don’t require any oxygen at this level unless I’m fighting a cold etc.
I also had a knee operation over a year ago still struggling to get the superficial wounds on top to heal, other wounds are noticeably taking much longer to heal. I had a foot rash infection Around my ankle about 6 months ago that I’ve never had before and cleared it up quickly with a prescription and over the counter medication.
To be Fair, I cannot attribute any of this to Vyvgart itself because my doctor wasn’t sure what is causing these issues either and as he mentioned a lot of these things could be directly related to just MG itself not to mention I’m no spring chicken at 62 years old.
All that I can really share is that I haven’t had any of these type of issues since the last nine months and Vyvgart is the only change during this period other than my MG itself.
On a positive note, Vyvgart has been a game changer for me as well and I’d much rather be on Vyvgart and deal with a few side effects versus dealing with all the challenges of MG without any treatments and would highly recommend Vyvgart to anyone from my experience. Just sharing my two cents if it lends value to your question and anyone else’s experiences…
<p class=”p1″>Best of luck with your Vyvgart treatments…!</p>
February 11, 2023 at 1:25 am #20751Kevin HillockParticipant
I have had four rounds of Vyvgart and have not had any noticeable side effects. But with UTI or other infections they could happen at any time and my good luck may or may not hold.
February 11, 2023 at 12:43 pm #20752Jennifer ThompsonParticipant
Thank you for the responses:) They are helpful. It sounds like a good decision to try this treatment.
February 12, 2023 at 8:55 pm #20755Nikki MeyersParticipant
After trying every drug out there, even the newer ones, I got Vyvert. It changed my life. I feel as good as I can after 5-6 y6ears. It wasn’t overnight like some but by the end of the 4 weeks, I feel really good. At first, I thought I was Superwoman and pushed myself to go overboard. Well, I learned that doesn’t work. But even after that, I usually recover in a day or so. For a week or so starting with the infusion day, I have horrible migraines but that is what happens when I get IVIG or any infusion. To me, a small price to pay. After 2 sessions of 4, I am waiting for about 3 months for the next one (tax season). Not sure if I will make it but willing to try.
Good luck to all of you
February 13, 2023 at 3:36 am #20757Phil AndersParticipant
Had a thymoma that was removed via Robotic-assisted surgery in August’22 following 5 plasmapheresis sessions, which provided total relief (was completely off Pyridostigmine and started my taper from 40mg Prednisone pre-surgery down to 5mg daily in Jan’23). I was prescribed 4 weekly sessions of VYVGART by my neurologist which was to begin on 9th December but my 1st infusion was cancelled because of high blood pressure (150/110), and this scheduled infusion was never restored in any way. I was started on my 1st of the VYVGART infusions on 17th Dec’22 & after the 2nd infusion on 5th Jan’23 (21 days later due to holidays & scheduling issues at the center), I had felt fantastic with no side-effects at all. After 3 infusions I was informed that was the end of my treatment course! I wasn’t too concerned at that time as I was in full remission or so I thought. My neurologist chose to schedule me for once-a-month infusion on a new Rx after just three were administered on the prior prescription. However, I’ve had a relapse 10 days after receiving my 3rd VYVGART infusion on 14th Jan.
I believe the infusions do help (ACHR Abs number decreased from 5.87 following thymoma removal, to 2.89 after the 3rd infusion), but there may have been a catch-22 scenario in that – VYVGART makes you more vulnerable to upper respiratory tract infections, which may cause to induce flare ups especially if you have had strong bulbar symptoms earlier. Three days following the third infusion, I experienced moderate flu-like symptoms (runny nose, watery eyes, itchy throat, etc.) and a week later, I had a full fledged recurrence of symptoms, with speech impairment being the worst. I’m currently awaiting insurance clearance for a new monthly infusion protocol that was initiated before my relapse. I’ll see my neurologist on February 16th to see what course of action she recommends next.
I would suggest that post each infusion, try to stay away from public places if you can and avoid situations where you will be exposed to allergens and smoky/polluted air etc.
February 14, 2023 at 2:54 am #20761RennaParticipant
Hi fellow MGers –
Has anyone else who got the Vyvgart infusions, experienced a change in temperament or mood ? The first time I got Vyvgart I felt physically much better and regained my strength and walk, but I felt off mentally / emotionally. I can’t put a finger on it, but I just started the next round and I’m at the 1st of the 4 infusions, and once again I was feeling very anxious and irritable post infusion last week. Has this happened to anyone else?
Vyvgart is still fairly new, so not sure of statistics on this, but would love to hear back from anyone who has felt this way or experienced any type of short temper or irritability as a result.
February 22, 2023 at 3:30 pm #20789
I had 2 neruo drs told me not to get it. I have a history of cancer in 2008 and said Vvgart can be cancer. I do not know how true that is
April 21, 2023 at 4:15 pm #21006Claire M WalshParticipant
This is all so interesting to me because I started Vyvgart last summer, and I’ve been wondering what results other people are getting from it. Personally, I feel IVIg helped me feel better, but my Neurologist did not think it was not a good idea to continue it any longer…had been doing monthly for 18 months. I felt my best last spring when I discontinued Cellcept and gradually came off Prednisone. That’s when I transitioned to Vyvgart. I had such high hopes it would be the wonder drug for me, but it is not. My fatigue and muscle weakness is worse and some aphasia has returned, which was my very first symptom. She tells me to hang in there because there are more drugs in the pipeline of development! I had no adverse reactions to Vyvgart, just not as much relief as I had hoped for. I continue using Mestinon 90 mg. 1-2 times daily as needed. My Vyvgart infusions seem to need to be 6-8 weeks apart. I was told by the drug company that the frequency is up to your physician, 57 days was apparently an average time for those in the trial. Good luck to all…it’s not a nice disease but there are worse.
May 12, 2023 at 9:17 pm #21090Rich MichaudParticipant
was on VYVGART for about a year. It didn’t seem to do much for me, I think because I had been on Imuran for 20 years. After A year on Vyvgart, I was diagnosed with pancreatic cancer. I don’t know the cause of the cancer, however, I know that imuran is a cause of cancer. But I was on vyvgart when diagnosed and was immediately taken off of vyvghart on my cancer diagnosis. I am 75 and male.
May 13, 2023 at 12:21 pm #21091Richard PerezParticipant
Started Vyvgart on 3-17-2023 after4 weeks 04-18-2023 no side effect yet. Have been feeling good working 40 hrs week . Mestinon 3x daily 60mg ,prednisone 10mg once daily , Cellcept 1,000mg 2x daily , I still have numbness around mouth lips ,left side of face comes and goes usually in afternoon that started after my last MG crisis . Thank God and doctors that I feel better .
May 18, 2023 at 9:56 pm #21107David SParticipant
Looks like the stars are getting into alignment for me with Vyvgart. Debakey VA Hospital has approved some for use. Their first infusion was today.
If I do start it, it won’t be until mid July due to IVIG scheduling and our travel plans in early July.
I am most interested in all of your responses and hope that you will continue to give updates.
I remain hopeful.
May 20, 2023 at 8:07 am #21119Jerry JohnsonParticipant
Hi. I’ve been on Vyvgart for over a year and have never had a reaction to it. I am also taking mestinon without any incident. The treatments have been wonderful in dealing with the symptoms. It’s the in between times when the symptoms come back. Currently my down time is 50 days from first trtmnt to the next first trtmnt. But, it works wonders. I would advise you to go with it.
May 25, 2023 at 8:34 am #21138Debbie sandwraParticipant
Ive been on vyvgart for a while now. I have almost no side effects. I do get swollen eyes which is kind of weird but thats all. Unfortunately I have to do them weekly with no time off. After 6 days symptoms come back. It worked for a few months and then I couldnt take the time off any more. Like everyone else this disease is so crazy and everyone has different issues.
May 25, 2023 at 8:35 am #21140Bli shameParticipant
I have been on VYVGART for nearly a year. As others have said it is a game changer. I have no side effects except for fatigue on the day of infusion.
VYVGART IS NOT ASSOCIATED WITH CANCER. Imuran and Cellcept can be.
The 50 to 70 day hiatus between treatment is not written in stone. If you are sliding back before your neurologist can write a script to give it more frequently.
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