April 22, 2022 at 10:43 pm #18960
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.
April 23, 2022 at 2:57 am #18964NanParticipant
Thanks for letting us know how it is going, Gary. It’s so nice to hear a positive report. Are you antibody positive?
April 23, 2022 at 3:19 am #18965
Yes I am
April 23, 2022 at 2:51 pm #18966
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!
April 28, 2022 at 7:30 pm #19013
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.
May 1, 2022 at 1:18 am #19056Amy CessinaParticipant
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.
May 1, 2022 at 2:13 am #19057
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.
April 23, 2022 at 4:44 pm #18970NanParticipant
Fingers crossed for you, TheresaG. Either way, please keep us posted. Hugs.
April 25, 2022 at 12:34 pm #18971
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.
April 28, 2022 at 10:18 pm #19017
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?
April 28, 2022 at 10:21 pm #19018
Yes, it was 13 baselines.
April 28, 2022 at 10:55 pm #19021
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. 🙂
April 28, 2022 at 12:15 am #19003
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.
April 27, 2022 at 8:29 pm #18989
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.
April 28, 2022 at 12:16 am #19004
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.
April 27, 2022 at 9:41 pm #18994Dave MattenleyParticipant
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
April 28, 2022 at 2:01 am #19008
Thank you Theresa. I am hopeful. Btw, I am seropositive.
April 27, 2022 at 10:44 pm #18997
<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?
April 28, 2022 at 4:30 pm #19011
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.
April 28, 2022 at 10:45 pm #19019
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.
April 29, 2022 at 12:22 am #19022
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
April 28, 2022 at 10:50 pm #19020
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.
April 29, 2022 at 7:29 pm #19030JessicaParticipant
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 .
April 28, 2022 at 7:40 pm #19014
BY THE WAY…I have had NO side effects at all on Vyvgart.
April 29, 2022 at 7:28 am #19023Earl PendleyParticipant
i wrote quite a bit and it disappeared, oh well maybe next time
April 29, 2022 at 6:47 pm #19027
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.
April 29, 2022 at 6:55 pm #19028
That is great. I kinda felt “refreshed” is the best way to describe it for me. I hope you continue to see improvements.
April 29, 2022 at 7:47 pm #19032
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.
April 29, 2022 at 7:49 pm #19033William StackpoleParticipant
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.
April 29, 2022 at 7:52 pm #19034Neil CowanParticipant
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.
April 29, 2022 at 11:10 pm #19048
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.
April 29, 2022 at 8:24 pm #19037Mark CoxParticipant
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…
April 29, 2022 at 11:03 pm #19047
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.
April 29, 2022 at 9:03 pm #19039John DyerParticipant
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 ?
April 29, 2022 at 9:18 pm #19041
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.
May 2, 2022 at 3:36 pm #19063Natalie RudolphParticipant
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
- This reply was modified 1 month, 4 weeks ago by Natalie Rudolph.
May 2, 2022 at 4:06 pm #19065
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.
May 4, 2022 at 9:10 pm #19078
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.
May 6, 2022 at 3:52 pm #19098
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.
May 6, 2022 at 8:01 pm #19102
Thanks Gary! Will do.
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