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Actual Results using Vyvgart
This week I received the third IV of the new drug Vyvgart. I am still seeing a great improvement over everything else I have tried. I will receive my fourth IV next week and that will be it until I need it again. This drug is a miracle for me, and I hope everybody gets a chance to try it and that they will have the same results.
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103 Replies
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Thanks for letting us know how it is going, Gary. It’s so nice to hear a positive report. Are you antibody positive?
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Yes I am
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I am seronegative.
‘Wednesday I received my second infusion. Sadly I have not experienced any improvement yet. The vyvgart nurse told me for some it has taken 2 or even 3 cycles of 4 infusions to have a change.
As we seronegative are always in question as to the diagnosis, it makes me continue to question it.
Gary, did you notice an improvement the same day of infusion?
was there improvement day to day after each infusion?I continue to look each day for a change! Maybe today. Just had 2 bad days, maybe today is my day!
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The day after I noticed some improvement but the second day after much more. Each treatment has not improved allot, but I am able to do things I couldn’t before. Walking with no walker or cane, no slurred speech, climbing stairs slowly but able. I am very happy. I have a couple of eye issues but overall, I am doing better. May take several months for further improvement but I am on the road to a better place.
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Interesting. The Vyvgart website says that it is for ACHR-Positive gMG.
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Ive been hesitant to reply to you. But since you mentioned in your post questioning your diagnosis. My aunt was treated for 8 years for MG that doctors convinced her she had. She had all the typical tests and they deemed her seronegative. She took a lot of powerful medications. Nothing helped. In the end she did not have MG and over the course of the 8 years of heavy duty medications she ruined her health so badly she is now in a wheelchair. Boss loss, bone fractures, spine fractures. Messed up all her bones her intestines and her peripheral nerves. seronegative can be slippery slope. As for my aunt she had no other disease, So it was all the medications she didn’t need making her so sick.
Plus if you ladies are anywhere near menopause or perimenopause that process makes one feel very badly too. Aches, joint pains, weakness, tingling, nerve zaps and headaches and even short of breath.-
Amy was your aunts story intended for me?
absolutely seronegative is a slippery slope as there is no concrete way to assure it is the correct diagnosis. I have been hesitant in doing many if the drugs.
so far prednisone, which I took prior to dx due to discovering it gave me a little QOL, 5 mg, maxed out at 20 thus last year, back down to 7.5.
IVIG for 4 months, pretty benign, and now vyvgart which no longer term affects are known but won’t be on it long to know if it works.
Thanks for input. -
Yes seronegative is a slippery slope but Theresa is seropositive, which means there is zero doubt that she has MG even if the medicine she does take does not work ( I know she is seropositive because vyvgart is only FDA approved for seropositive patients).I am sorry about your aunt but neurologists do not make the diagnosis of seronegative MG lightly with only a few ambiguous symptoms and no other tests, (some people wait for years for a diagnosis when they are seronegative )because they know the drugs used to treat it that are usually life saving drugs for most with the disease are harsh and come with a whole slew of side effects which is possibly what happened to your aunt or the disease progressed to point that put her in the wheelchair which can happen with MG even with treatment .
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Jessica,
if you are referring to me as being positive, I am not.
I am without a doubt Seronegative.the FDA in only approved it for ACHR positive patients so the Seronega would not sku the results making it available for no one.
as a Seronegative, my doctor and infusion company were both instrumental in obtaining VYVgart for me. Not an easy task.
it has been short of a miracle treatment.
NO side effects as others report.
everyone responds different.
whether they are positive or negative.
that said, it does have mostly good results.
I am now middle of 3rd cycle.i find it takes 2 infusions each cycle where it really takes off.
I’ve had some interruptions with Covid and a car crash impacting my treatment. Even with, it is a very positive experience.anyone Seronegative needs to have a doctor and infusion company that knows how and is willing to go the extra mile to make it happen which includes lots of supplemental financial copay and insurance help.
i know they, infusion company , is hoping to get more clients on board that are Seronegative given my positive results.
I wanted to set the record straight for anyone reading this thread that I AM Seronegative! Getting VyVgart and doing well with it.
BTW, the initial phase included Seronegative and they had good results just not as good as positive because not all Seronegative are truly MGers. They may have other autoimmune issues.
again, They wanted it to market and we would have possibly ruined it for all.
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I stand corrected and I have to say I am so glad I was wrong you give me hope. What is the name of your doctor and what is your insurance in what country. My neurologist tried on multiple occasions with my insurance and I was denied and believe me she is tough. You are right it is not the argenx that is the problem most of the time it is the insurance, they go by specific guidelines and FDA approval is one of them .Getting past that is a huge hurdle and takes a miracle I am so happy for you as I said before,it gives us hope.
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Hey Amy,
What do you think made your aunt sick before all the medication? I am seronegative, and I always have a feeling of doubt that the diagnosis is correct.
Celeste
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Fingers crossed for you, TheresaG. Either way, please keep us posted. Hugs.
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I noticed improvement the second day and significant improvement the third. Ongoing it has leveled off. I am better than I was on anything else but still have room for improvement.
We have a blog that chronicles the process.
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Perhaps it is the tortoise, not the hare race with this stuff.
and perhaps the degree of disease impact.
do you know your ADL score when you began the treatment?
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Yes, it was 13 baselines.
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Gary, mine was 9. So perhaps it makes sense your response is stronger than mine.
Hope todays infusion gives me more strength.i do feel decent, not like I hope for, but maybe patience needs to be my new goal. 🙂
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Thank you Nan.
im going to sway a bit from my last comment that it was not working. As we know our snowflake disease impacts each of us minute to minute, hour to hour.
Ont thing I’ve noticed of recent, my maps seem to be less in length. I. Able to get some restorative benefit from a 30-45 minute nap, previously 1-2 hours.
im sure this is why clinical trials must be difficult. Subtle changes often not noticeable. I probably am looking for a magic huge curative change perhaps. Like prednisone, if we take a huge dose, magic happens. Perhaps for me this will be more gradual and baby steps.
I’m not one to give up, so I will take what I get.
when I don’t journal, I generally don’t because I’m doing things so i don’t have time.
the more I do, the more tired I get, so less time to journal. Lol.need to journal daily for this vyvgart test.
fingers crossed for improvement after tomorrow’s infusion.#3.
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I start my first infusion next week. It was interesting to hear two different reactions to the infusions so far. Keeping my fingers crossed for me and everyone leaning on vyvgart.
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Wish you the best Mark.
are you seronegative or positive?im glad to see as many as there is getting it approved and started. It does seem to be the best thing that has come along in some time with minimal risks.
thus far I’ve had no negative reactions.
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Hi Gary.
let me know how your new treatment works especially if you have any double vision problems and that they get better or go away I currently use Soloris Mestinon and Cellcep but still having problems with some double vision. Thank you Dave-
Thank you Theresa. I am hopeful. Btw, I am seropositive.
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<p style=”text-align: left;”>Hi, Folks -</p>
I’m looking forward to Kaiser Permanente adding Vyvgart to its pharmacy. I’ve had my share of prednisone which I’ve stopped taking. Has anyohad any experience with anabolic steroids, rather than corticosteroids?Wayne
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Hi everyone, this is my first post. I received my 1st Vivgart infusion yesterday. I am antibody positive. I felt very weak & dizzy all day. Could not sleep. Feel somewhat better this morning. Does anyone know what it’s like to ween off the Prednisone? I can’t wait.
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Paula,
As with IVIG, it is best if you hydrate super well, half your body weight in oz, 24 hours prior.
I have had no side effects.
how long was the actual needle in the arm and out infusion?
it should run about an hour, at least mine does and they use 2 vials of vyvgart for my weight. That would impact the time.
did you get connected with a Vyvgart nurse?
if jot, you might want to go to their website and connect direct with someone and explain your side effects. Or your doctor of course, however, also vyvgart as they will have the most experience to guide you.
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Hi Teresa, my infusion lasted one hour and then they observed me for another hour. Is That normal? I have been hydrating, living in Arizona has taught me the importance of that. I have an appointment with my neurologist tomorrow. I will find out then about weaning off prednisone. I have been on 20 mg a day since beginning of January. I will let you know what she recommends. Is this how I contact you? I am new to all this. Thank you
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Paula, also weaning off prednisone is very tricky and can cause significant symptoms, known as rebound effect.
muscle aches, nausea, fever, headache all kinds of stuff including MG symptom return.you must go slowly.
for me, I was in 20 mg in November, I am now at 8. As you can tell I’ve dropped very slowly as the doctor initially said to drop 5 mg. Well I thought I died.
since, I’ve come down .5-1.0 mg every 2-4 weeks. Each drop I allow stabilization until I feel normal again.
it’s miserable. Sorry for the good news.if you want to connect with me direct, I’ll share some information I found that really helped.
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Theresa I had same experience. Ended up going down 1mg at a time. Reducing every 2 months. Was very difficult
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Weaning off prednisone now, going from 60mg. My neurologist says it will take up to a year to come off, she plans on going extremely slowly when I get to 20 mg ( 5 mg every 3 months) so as not to rebound. So far only good things have happened . My belly is down by half, the puffiness of my face is almost gone, and my neck and the back of my neck lumps are going down. So far so good, can’t wait until I am off prednisone for good .
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Hello Jessica
i weened off pred. It was a very difficult process. Took 2 yrs. My adrenal function never came back.
I am glad to hear all the success with the new drug. Good luck to you
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BY THE WAY…I have had NO side effects at all on Vyvgart.
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i wrote quite a bit and it disappeared, oh well maybe next time
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Hi everyone, I am happy to say that I feel better today. Second day after my 1st Vyvgart fusion. No side effects. I know it’s early in the process, but I am just so happy to be feeling better.
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That is great. I kinda felt “refreshed” is the best way to describe it for me. I hope you continue to see improvements.
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I was weaning down from 60 mg of prednisone and was down to 10mg every other day. In my case, I had a reoccurrence which I can not point to any trigger including the lower prednisone. This time, my symptoms have been worse. First time was just double vision, now includes neck weakness and fatigue. I am back up to 40mg of prednisone and just finished 5 plasmapharisis treatments and next to no improvement. All this to say, I am looking forward to my first vyvgart infusion next week from what I have been hearing in this forum.
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Glad to hear so many positives with Vyvgart . I was to start my first infusion May 2 but came down with covid. Now I’ll start the 16th of May, can’t wait. I’ll post how I make out later.
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I had my fourth infusion yesterday and I FEEL better but little changes in physical problems. I have leg neuropathy and BPPV (vertigo) so walking is perilous without a cane. No change there but mentally I’m improving. I was told it would be a roller coaster ride of downs and ups but I’m on an old wooden one going only down. It’s a rickety ride.
I got MG at 78 so it messed up my desire to grow old gracefully. I probably had it a year earlier but the VA doctors didn’t catch it until the head of neurology called me one night and told me to go to Eisenhower emergency care immediately and tell them I had MG. Three weeks in ICU and more weeks in hospital and rehab I felt pretty good. I even had friends over for drinks. I have a great kid in 3 hours a day during the week and he not only cleans the litter box but cooks and shops. A great improvement over my last 5.After treatment with IVIG didn’t work I fought for two years to get my doctor who had treated me at Eisenhower, finally abandoning my heath plan and returning to the VA. I signed up for a research program but it’s located in Irvine, 67 miles away. Vyvgart was only approved December 21 so getting him earlier wouldn’t have mattered. He’s aggressive in management of MG and has a wide reputation. I’m in the Palm Springs area and live 2 miles from Eisenhower in Rancho Mirage so having everything near is great. I need drive only 2 miles to treatment. Oh, yes I still drive.
I describe my available energy as a pie (or a quiche) with 25% d going to getting up for coffee, 25% for feeding the cats and making lunch, 25% for dinner and25% for hygiene. I’m in bed in front of my 60” screen watching tennis and TMC. It amazes me how many people in the movies I’ve known- I had Eleanor Parker make me chili- I am stunned that she was such a great dancer.
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Neil,
I love your pie / quiche theory.
I’m sure we can all relate!
I am a native Californian and still go back and my niece lives in Cathedral City.
im curious if you would share who your doctor is there. I go back to UCLA, OC for various doctors.
i have a good one in Phoenix but it never hurts to have someone in your back pocket.
I hope your Vyvgart treatment improves things for you.
I just completed my third. Jury is still out for me. I want it to be helping but I don’t want to think it is and it is not.
we will see.best of luck to you.
‘do you find the desert heat makes your MG symptoms worse?
im in the mountains in AZ so much like CA mountains. Beautiful.
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I’m 62 years old, male and still struggling with Vycart compared to Gamunex. I rapidly had about every MG system come on in October last year for the first time i.e. Double vision, chewing, eye drooping, fatigue and respiratory issues etc. Like most it took 2-3 months to fully diagnose MG after Eye doctors and everyone else… After being diagnosed with MG, They started me out with the 5- infusions of Gamunex for five straight days, everything came back strong except respiratory one some fatigue… But I Had severe migraine headaches and that was my only side affect but the headache were really bad so we considered Vyvgart in addition to the longer periods in n between infusions … I’ve had the 3- initial Vyvgart infusions 45 days ago and that was 30 days after the Gamunex infusions ran out…
Vyvgart started out with the same migraine headaches but slowed down a little in the last couple weeks with mild headaches, I’ve had anxiety from the beginning of Vyvgart like I’ve just drank 3- cups of strong coffee all day, upset stomach the entire time but may be due to all the other MG meds I’m on… 35 days into Vyvgart I’ve started getting rashes on both my feet that are Vyvgart related as per Dr. Appointment yesterday. Using meds and over the counter ani-fungal medication… Double vision has been coming back with drooping eyelids off and on daily and fatigue more noticeable lately… Overexertion will also trigger both eye issues and respiratory that also just came on lately…
You must wait a minimum of 50 days in between Vyvgart infusions and feels like I’m running down premature of the 50 days with the recent eye and fatigue issues…
I am going to try one more dose of Vyvgart in 5 days but may be going back to Gamunex and finding a way to deal with the migraines based on my initial experiences…
I fully understand Everyone’s bodies and symptoms are different so please don’t base using Vyvgart on my experience, just sharing my recent experience using Vyvgart with the form…
Mark
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Mark,
I’m curious if your are hydrating properly before infusions of any type but especially IVIG.
my nurses had me drink 50% of my body weight in water ounces for 48-72 hours before my I fusions and 48 hours after. I seldom had headache as a result, only mild and that was after 5 months of infusions, 2 days, twice a month. I became sensitive to it where I think was making my life worse.
‘additionally they would give me Benadryl and Tyler right prior to infusion.
I’m not sure of the timelines for your treatments but it does sound like a lot in a relative short period of time.
for many things it if not enough time is given for something to work or not long term you will never know for sure.
i also found if I took Benadryl for several days after that helped. Of course Tylenol I assume you take for headaches.
vyvgart they say the fluids are not as important prior but I still need to 24 hours prior or I have vein issues.
Do you have a Vyvgart nurse?
I was told by her that it can take up to 3 cycles for some to respond.
of course some never will.
Are you antibody positive?
if so, I would hang there for a few cycles to see if it works, it seems to be a great option.
also if no one has told you Solaris seems to be a good option for many. I think it might take a little longer for results, but this disease is a long haul, so it is best to choose what will get you that long haul treatment.
good luck!
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So I am currently on IVIG every 3 weeks for 3 days, and Soliris every 2 weeks. The results were great at first but now are demising as of late. I am curious w/ Vyvgart do you replace all your other infusions ? How long do the infusions take ? Whats the cadence ?
Thanks !
-John
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John,
Over time Vyvgart should replace many of your meds if it works for you properly. You must start out the first series with 4 infusions over 4 weeks. In other words, one infusion per week for four weeks. The infusion itself takes about one hour, then they monitor you for 1 hour. Not bad at all compared to IVIG and others. You MUST take the first series over 4 weeks. After that you monitor your symptoms using a MG ADL score that is sent directly to Vyvgart. If your Dr. is doing this any other way tell them to contact Vyvgart directly for instructions. After your first series you and Vyvgart will monitor your symptoms and decide when to do the next series. Hope this helps.
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I had my first dose of vyvgart last Tues. 4-26-22. I have had MG for 4 yrs and have been on Cellcept, Imuran, Soliris and IVIG in the past. Had to stop those treatments (except the IVIG) for a number of reasons. My eye droop is my worst symptom right now. Has anyone had any luck with improvement in their eye drooping?
I have been on Prednisone and Mestinon for the last 4 yrs as well
Thank you, Natalie
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Hi everyone, I am on my fifth day after my first treatment of Vyvgart. I am continuing to feel a little better each day. I continue to have pain in just right eye with a pulling sensation. This is a symptom that has been ongoing since I was diagnosed in June 2020. I have been to my ophthalmologist and they keep ruling out other things. Just curious if anyone else has this symptom. Sending good vibes to everyone that this new drug helps.
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Hi, Folks -a Kaiser Permanente patient. My neurologist has been very helpful. I’m 73, had a thymectomy about a year ago. I’ve been following the the research on FcRn receptor inhibition and Eculizumab binding to C5 and thus inhibits the cleavage of C5 into C5a and C5b. I suspect that most MG neurologists don’t get into this stuff with their patients.
The thing is, my neurologist likes old treatments more than new ones. I think it’s time for a 2nd opinion.
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Wayne,
You can contact the Vyvgart team yourself and have them contact your neuro team to get things started. I was the first person in Houston to receive the Vyvgart treatments because we pushed our Neuro team to work with Vyvgart. Now I am down the road with the new treatments and living differently that I have in years. Not a cure, but really has made a difference. Go to the Vyvgart website and follow the leads to them. They will help you get started. Good luck.
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Thanks Gary! Will do.
Wayne
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Hi, I’m Jim and I’m about to have my first vyvgart infusion in two days. I am 82, have had this diagnosis for 18 months. It looks like my cellcept might be causing my anemia, so we are hoping the vyvgart will let us ramp the cellcept down, if it works for me. I’m just so weak sometimes. Can’t walk sometimes, other times i can ride the tractor. It’s great hearing from others so please let me hear from you guys! i have felt like i am the only one at times. I drive an hour and a half to a great specialist in Rochester, but even so, I had to ask about using vyvgart myself, and he said sure, let’s try it. The vyvgart nurse manager on tve Argenx site is great, she hooked us up to an organization that is paying my copay!
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I just completed my first series of 4 Vyvgart infusions. I am ACHR-Positive gMG., with my initial onset in April, 2020. I initially had positive results from IVIG infusions, but in the last 6 mo., they were not very effective in improving my symptoms (labored breathing, swallowing issues, blurred vision, and esp. slurred speech [which is important to address for me personally because I’m a licensed marriage and family therapist who talks to many individuals on a daily basis]).
Knock on wood, Vyvgart has done wonders for me. The day after my first treatment, my symptoms improved dramatically, esp. speech, breathing and vision. I have just a little issue w/swallowing, but nowhere near where things were before the first treatment series. I go back to my neurologist in August for follow-up.
As an aside, the Vyvgart patient assistance program is WONDERFUL, and has assisted w/copays. I also have a nurse who periodically checks in with me to see how I’m doing.
I know that my story is probably rare, and that many times individuals need several infusions or series to stabilize and see change. I feel very fortunate that I’ve had a great result from my Vyvgart treatment, and it is my prayer that this drug can help others like it has helped me.
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Vyvgart has done wonders for me. I noticed marked relief from all my symptoms two days after my very first trtmnt. I just went through my second series of trtmnts. My symptoms started to return after about 45 days. So my symptoms were not as severe prior to this round of Vyvgart. Also, no bad reactions from Vyvgart.
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<p style=”text-align: center;”>I had my 2nd Vyvgart infusion Tuesday and I am seeing a noticeable difference in my life. I am hoping it continues to improve 🤗</p>
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Hi, my specific question is about what others have done after the first 4 Vyvgart infusions. Luckily, I was taken taken off Cellcept (3000 mg a day) in April at my request as I had GI side effects and severe bruising and bleeding that came way too easily if I scraped or bumped any part of my skin. THAT ALONE made me feel so much better! Wish I had tried sooner.
History: Diagnosed positive in Dec. 2019 at age 77, IVIG twice monthly for 15 mos., plus Mestinon, Prednisone and the Cellcept. I started the 4 Vyvgart infusions in June, finishing July 8. NO side effects at all but warned to hydrate, hydrate which I did. Now I am trying to stop Mestinon so skipped all doses today and doing ok so far. Noticeable signs with slightly more trouble pronouncing words..I can live with that. Still nap some days but often 20 minutes does the trick. However I am still on Prednisone 5 mg., instructed by my Neurologist to wean off that after one more round of Vyvgart in 5 weeks. Someone else said what I construed to be is that Vyvgart decides how much you need for the second round, not your Neurologist. Here is where I am confused. She says Vyvgart has to work, how well depends on how sick you are. I freely admit that I think I am not as sick as most now, but certainly was in the beginning. Had a crisis within 3 weeks of diagnosis, 12 days in hospital, 8 of which in ICU. Slept my life away for months until I got regular IVIg, and then I improved. I’m sure the 60 mg. of prednisone had alot to do with that also , but since I have fairly severe osteoporosis, she started tapering down as soon as she could. To the person asking about Prednisone, I only began to feel better when I got down to about 10 mg and could sleep again more normally.
Hope all this helps someone and also hope for more feedback on what others are doing post first 4 Vyvgart infusions.
Thanks.
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Claire-
if you review the trials, most patients continue with some co treatments. Generally prednisone and mestinon.
Depending on your symptoms, reductions should be done slowly when and if needed.
i still and likely plan to use Mestinon as a supplement for ocular symptoms for a long time as that is the one thing VyVgart is last to help.
Im down to 7 mg pred. Hoping to go to 5.But I’m not going to spoil the combo right now after 3 cycles on VyVgart. Remember it is still new and the cumulative effect is unknown and individual. That is why there is a minimum of 52 days from start of cycle to being able to get the next cycle. Some may go 8 weeks after a cycle, I’m on an every 4 post infusion #4, if that makes sense. My doctor wants me to go to where i begin getting symptoms again, which i did the first cycle then crashed hard, so not really thrilled on that idea. This is a FDA / VyVgart directive. It is super well controlled. It is also based on weight for each infusion.
I hope that info is helpful.it is a good idea to read the trials for yourself as it contains a lot of good info. There is a patient side as well as doctor side.
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