June 9, 2021 at 6:39 pm #16308Michelle GonzabaModerator
When I received my first IVIG treatment, I had a rough time with it. In one of my earlier columns, I talked about the side effects I experienced, which included heavy bouts of nausea.
If you’ve received IVIG treatment, how did your body handle it? Did you experience similar side effects or others?
Were you an outpatient or did you stay in the hospital while being treated?
July 8, 2021 at 9:07 pm #16427
IVIG treatments have been a tremendous help with my MG, and I have had no side affects or reactions other than some fatigue and chills when I first began them. Since Nov 2020, I have received 100mg IVIG infusions 24x. Each of them as has been as an outpatient in the infusion clinic of a VA hospital I have a terrific neurologist and an very thanks for the help of IVIG therapy.
July 8, 2021 at 9:31 pm #16428Michelle GonzabaModerator
Hi Tim! IVIG has helped me a lot too. Luckily, I only reacted poorly the first time I got it. Since then, my experience has been very similar to yours.
And it’s so great to hear that you have such a fantastic neurologist! They sound just like mine. It’s a lifesaver to have someone so good in your corner.
July 9, 2021 at 12:55 pm #16430AnonymousInactive
Hi, It’s Stanley Schildkraut here. I was started on IVIG as an out Patient in 2012 at Downstate Hospital in Brooklyn New York. Monthly treatments followed by terrible AFTER reactions
My doctor’s idea was doubling the treatment.
A coma from April 3014 through October 2014, suffering from a acute respiratory failure.
Doctors started plasmapheresis once every other day. The company broke, I survived. It’s 7 years. I thank my doctors and My Higher Power. My story
July 9, 2021 at 8:06 pm #16443Dean CountsParticipant
I was originally diagnosed in 2012. I had IVIG treatments in 2017 and 2019, both home infusions, for exacerbations. Luckily I had few side effects mainly fatigue. But they worked well for me.
July 9, 2021 at 10:47 pm #16444AnonymousInactive
I’m glad IVIG worked well for you. I’m led to believe IVIG, in tempered amounts of dosages can have beneficial effects.
As with any other medicine the administering doctor must have complete knowledge of this procedure.
The COMATOSE life I lived from April through October of 2014 was solely brought on by the severity of the gMG and the over treatment of IVIG.
I’m led to believe that the Acute Respiratory Failure I suffered was a doctor’s failure to understand the gravity of the disease MYASTHENIA GRAVIS. Be Well
August 9, 2021 at 1:57 am #16714
I too received ACUTE RESPIRATORY FAILURE and a COLLAPSED RIGHT LUNG also. I already had all the undiagnosed Ocular MG and Generalized MG symptoms. So after 8 months of no diagnosis, I went to a BANNER HOSPITAL URGENT CARE CENTER for a diagnosis.
But the doctors … including three consulting NEUROLOGISTS … could not diagnose MG. My breathing was getting bad, I was drooling PHLEGM, was forced to lie flat on my back …. without an neck support … and they gave me anesthesia to stop me moving for MRI’s and CAT scans. Us MG patients already have suppressed MG diaphragm breathing. So I never came out of the anesthesia afterwards. The recovery nurse called a “CODE STROKE” … I was resuscitated back to life, was sent into ICU, and quickly contracted 3 types of PNEUMONIA at that BANNER Hospital and spent 4 months in three hospitals … because they were not familiar with MYASTHENIA GRAVIS ….. and did not know HOW DANGEROUS SOME DRUGS CAN BE !!!!
August 14, 2021 at 9:47 am #16779AnonymousInactive
I’m sitting with my wife trying figure for the umpteenth time why I ended up in a coma with Acute Respiratory Failure.
A doctor who knew little about gMG,Omg or any other stage of Myasthenia Gravis is our answer.
Watch your doctor. As in any other profession there are good and bad however in the medical field the bad or “Acting” can KILL you. Be careful,be well, GOD BLESS. Stanley Schildkraut
July 20, 2021 at 2:33 pm #16545
My health care is through the VA. I know there are some bad experiences reported from VA care, but my MG journey with VA has been excellent. I have had IVIG treatments every 3 weeks since January. They are a major help and boost. I’ll be back in the chair this Thursday. I’m thankful I have tolerated then well.
We can see by the testimonies on here why MG is called the Snowflake Disease.
Be well and safe!
July 22, 2021 at 4:48 am #16567Deb CouraudParticipant
I had a reaction to Gamunex-C after a hospital stay of 5 doses and discharge followed by infusions at home x 1 in one month. After home dose I was covered in a rash, nausea, but no headache, no itching, rash was not hives. I have pre-meds before each dose Tylenol and Benadryl.
My rash lasted 3 weeks. It was miserable .
I went to allergist/immunologist was told it could be Gamunex switched to Privigen no problem since and have been on Privigen several years.
No brand proven more effective than other but my allergist felt it may have been related to the additives or inactive components in the Gamunex but who knows for sure.
I just know the change in brand fixed the problem. So I would say what does it hurt to switch brands. Doctors sometimes just get use to prescribing one brand vs another.
July 23, 2021 at 5:29 pm #16574David SParticipant
Good day all –
I have been IVIGing for about two years now. I hate IVIGs.
Early on the treatment was monthly. After a number of treatments I requested the 3 concurrent treatment days every 2 months in an effort to have more time between treatments so we could do some travelling.
Since beginning this treatment I was unsure as to it’s effectiveness as I felt no improvement after the IVIGs and felt no need before the scheduled treatment – either on the 30 day schedule or the every 2 month schedule.
In Feb of 2021 I completed my last 3 concurrent treatment every two months and requested to my Neuro that I skip the next treatment as I felt no improvement from the IVIGs. He agreed.
I met with my Neuro in April, and based upon my condition he suggested I resume these treatments. During this Off Time I overdid physically and started to again experience severe Double Vision and increased my Prednisdone to get my eyes back in order. Also during this Off Time I decided to use use a cane to improve stability.
So I am back IVIGing every 30 days – .
For me the IVIG side effects were non existent. I felt no better before the treatment or after so I assumed that they were having no effect. I guess I was wrong. Since I have resumed this treatment my cane has stayed in the corner by the door. My wife also agrees that the IVIGs help stabilize me.
I get my health care through the VA. and get my IVIGs at the VA in Houston. I have no complaints. They have been responsive and feel I am getting good care.
Current med treatment –
IVIV every 30 days
15mg/day Prednisdone. Will wean this back down to 10mg/day next month.
50mg Azathioprine 3 times daily.
2 – 60mg Pyridostigmine- 2 times daily.
1- 180mg slow release Pyridostigmine every evening.
August 25, 2021 at 3:30 pm #16880AnonymousInactive
Dear Dave. Thanks. You did what I did. Became your own PATIENT ADVOCATE
Doctors are funny, they will write s paper about your experiences with IVIG. Get it published someplace and you my friend will be in s box.
You’re alive, you sound like as million dollars. Thanks for having the guts to stand up. GOD BLESS
July 23, 2021 at 7:50 pm #16575John UlfelderParticipant
I had 5 IVIG treatments as an in-patient shortly after my initial diagnosis of MG, in part because the prescribed mastedone was not making any difference in my MG symptoms, drooping eyelids and difficulty swallowing. I had no side effects from the IVIG treatment, but no real improvement in my symptoms. They followed the IVIG treatment with 7 rounds of plasmapherisis (2 days apart) also as an in-patient. This treatment did not have a marked effect on my symptoms either. With the help of therapy while in the rehab hospital and at home I have regained my ability to swallow and am able to pretty much eat and drink everything. As a result, I will be having the feeding tube that was installed while I was in the hospital removed in the next couple of weeks. My eyelids, however, are still drooping and interfering with my vision. My neurologist continues my prednisone and mastedon and says it may take some time. I am scheduled to meet with a neuro-opthamoogist who works with MG patients to discuss additional treatment for my eyelids. Fingers
July 26, 2021 at 8:53 pm #16590
Once t he approval was done I had on treatment of 500ml. That worked well. I was then moved up to 3 times every four weeks.About a year ago it was increased to every 3 weeks.
Sometimes I have a slight discomfort, much like a sugar drop. I think it is mostly tension. A protein bar fixes it right up.
August 25, 2021 at 9:54 pm #16884MarkParticipant
I’m having that dropping eyelid surgery late Sept. much of it is simply because of age. It in itself is common. Pretty much like getting a free facelift. I’ll post after the surgery and let all know how it helped the horrible watery eyes. That is what causes the vision problems according to my specialist. After the results are in they may optimize the additional upper eyelid surgery. If it weren’t for the eye problems I’d be almost back to my old self aside from the leg weakness. But I’m getting there. I went to Dent for 3 years and never once did they mention a solution through surgery. All they said was there is nothing that will help. Then again I only saw the Doctor once. Alway the physician assistant. After a short time I new the routine better than them. You know— the pull push, push the eyelids, push the head etc. so go for the surgery if that’s possible for you. I’ll report my findings late Sept. Best of luck
August 25, 2021 at 10:53 pm #16886AnonymousInactive
<p style=”text-align: right;”>GOD BLESS, I’m not ready for the surgery. Keep me(us) informed</p>
September 23, 2021 at 10:47 am #17244AnonymousInactive
Good morning Lou, it’s an interesting post. Thank you.
I began IVIG in 2012 or 2013. It almost killed me.
My then neurologist knew not much about MG. Most of them swear they do.
The Shiley port you’re not wearing is an an IV, why go through wearing a port that should be changed, oh you doctor didn’t tell you that?
The easiest and most successful MG treatment is Plasmapheresis. It”s once or twice a month procedure, maybe 2-3 hours. There is no cure but you will feel a difference in a day or two.
Do some research on your own. Become your own ADVOCATE. Don’t be afraid of speaking to your Doctor.
The Acute Respiratory Failure was caused by over a years worthless IVIG treatments.
It’s fancy and doesn’t do much. Gee you’re doing it a home. You doctor is not doing his homework or bringing you up to date.
Yes Mr V, there are no Santa Clauses but there is something that will give you a better quality of life.
Thanks for reading this. Be well. Stanley Schildkraut
August 2, 2021 at 4:31 am #16654
THANKS FOR ALL THAT YOU ARE TALKING ABOUT … REGARDING IVIG.
These discussions give me much needed information about other patient’s experiences with IVIG treatment. It took me 8 months to be diagnosed, put on meds, and be given 5 days of IVIG treatments initially. I realized that IVIGs must be DANGEROUS … as the first time it happened to me, the lady technician pulled up a chair and spent over five hours in the doorway of my hospital room the first day. I assumed she did that ….. to either call another NURSE CODE STRIKE … or rush and stop what they were doing to me … if I had a terrible reaction.
I had died already at the first hospital. I did not come out of the anesthesia they fed me (to do MRI/CAT tests) and they called a CODE STRIKE and I was resuscitated. Because they did not recognize my MG (suppressed diaphragm breathing) … they doubled down by giving me an anesthesia to suppress my breathing and my movements from breathing choking. They did not recognize that MG patients have phlegm, swallowing drools, and can not be flat on their backs with no neck support.
After 5 months in five hospitals ….. being stuck in my bed for three months, being on hoses and IV’s for five months, being on no food eating (on enteric and PEG tube feeding) and urine foley catheters for three months, and on leg and wrist restraints tied to my bed rails for six weeks (self ex-tubation said some reports …. more likely my HORRID NIGHTMARES) …… I was freaking out … worrying if I would have to return to the horrors of a COLD HOSPITAL room to get more IVIG treatments. At least it sounds like from these letters … that while I will probably need more IVIGs …. at least if an outpatient … I would not be trapped inside multiple hospitals again. THANKS for information on what you have encountered with IVIGs. A potential return to hospitals for a IVIG treatment or second septic bursitis infection MG crisis (from my toasted immune system) still has me freaking out.
I do not know how to say how effective my IVIG was and about its side effects ….. as I don’t know if it is the IVIGs ….. or all my daily drug MEDICATIONS and syringes that keeps my MG SYMPTOMS in check for now …. or continue my bad side effects. I do not know about if I had any NAUSEA ….. as after my first IVIG treatment, it would be another 6 weeks before they would let me try to attempt to sit up at the side of my bed, and attempt to stand. It would take weeks of therapy to relearn how to stand and walk again … after all that time restrained to bed rails.
August 5, 2021 at 12:52 am #16679
Jonathan, what a story. My excursion was mild in comparison. This to me is why this site is so valuable. I never heard of IVIG but I never understood what the “artificial” plasma was that was put back in. My greatest problem was a massive leak of blood onto my bed. the cancer type drug may have been Azathioprine??, I do not remember but could safely be administered for only a year. I feel so blessed not having the absolute debilitating symptoms others have had. This disease must be like fingerprints, none other set is alike, only similar. I had a gamma-globulin shot in the military, do not know why butt it hurt. I received many shots on world-wide status. Now I am very careful what I take, including a flu shot and especially quinine. Pulmonary embolisms are painful if you live thru the experience. Praying for you brother.
August 8, 2021 at 6:15 pm #16710
I have had to have IVIG treatments twice in the past year for flare ups. I was an outpatient and received every day for 5 days. It was for three hours each time. I really did not have any reactions. They had me drink 3 bottles of gatorade while I was receiving the infusion. They said it would help with the side effects. They also told me to drink it when I went home. The treatments really did help me.
August 11, 2021 at 12:44 pm #16727
IVIG Prep: I have had IVIG treatments every three weeks since January of this year. My veins are good, but hard to poke, so I always ask for the IV Team rather than the floor nurse to do the IV. One of those nurses told me I might try a product called Liquid IV a few days before my infusions to better hydrate and make the veins more friendly. I tried it and it helps me a lot. I am now using it every time for three days prior to my IVIG, I will have one or two bottles of water with the Liquid IV powder dissolved in them to super-hydrate. I also use them in hot weather on the golf course or outside. They are inexpensive and available at COSCO & Amazon, and likely elsewhere. Good to check with your MD about this, but wanted to encourage those who get frequent IVs and don’t like to get poked more than once (I’ve needed as many as 4 tries with regular nurses).
BEST TO ALL! Keep looking UP!
August 12, 2021 at 2:35 pm #16739
Thanks to everyone .. who has been replying about IVIG treatments and how it goes. My veins are hard to poke …… as well ….. as nurses have trouble finding a vein. So you need really trained people to get to your blood. At the third of five hospitals last year …… I had so many blood draws and IV’s in both arms …. that the nurse finally had to cut off my hospital ID name band …. so she could find a clean FRESH bit of skin & veins … to put in a new IV. So as a result … of these bad experiences … of nurses trying to find my veins for Sonora Lab Blood draws (18 vials in last three months), contrast dyes for imaging tests IV’s, and other draws …. I have NEVER DONATE BLOOD. It was too long and painful to get any blood out.
Now that I have finally been diagnosed with MYASTHENIA GRAVIS after an 8 month search for my disease diagnosis, I have been told that I can not donate blood or plasma … as my blood is ruined for anyone else …because I am stuck (literally) having to take too many medications … including five blood thinners (even though I have 0+ blood the thinnest one) and 2000 mg Daily of CELLCEPT to TOAST and KILL my immune system.
So thanks for the hydration information.
August 12, 2021 at 8:52 pm #16757
Most of you are beyond my league! One of my many trips to the er I had a squad medic ask if he could start my IV for his training. Always a hard stick, he worked on both hands then got his supervisor who come up dry, then a floor nurse came over and zip zop she rang the bell on my wrist. When I complimented her she promptly told me as she pointed to another curtain that she had just failed over there. I always try to tell the phleabo to dig for it. It really doesn’t hurt as much as the idea hurts. Once while installed a young nurse failed to stick and she really felt bad, to tears. They called for who I dubbed “BIG NURSE” she was a 5 foot nothing smart cookie. She had more hardware in her pockets she rattled as she came into the war zone. I have no idea what she carried in her smock but she put a warm compress on my elbow, cuffed my arm and my IV arm was changed for the next cycle. One thing I would never allow was to be stuck in either hand between the little and ring finger. That vein became plebitic very quickly. My INR checks are done 3 of 4 now with a finger stick like a sugar check. One is always drawn for a lab INR and the butterfly is used. The veins roll but very seldom miss, follow the yellow brick road. The scar tissue is softening with less use.
August 14, 2021 at 2:56 am #16774Jennie MorrisParticipant
I’ve only had IVIg 2 times. The first time was in 2009. The first day went well so the second day they increased the rate. I had a third day scheduled and arrived at the hospital infusion center with a headache. They admitted me through the emergency room. My lumbar puncture was positive for meningitis and the culture proved it to be aseptic meningitis. I tried again in May this year in hopes that it would augment my Rituxan treatments. My neurologist prescribed an extremely slow rate but again I was back in the hospital with aseptic meningitis. On the positive side, my Rituxan treatment 2 weeks later was more successful than any in the last 3 years. But hospitals that don’t have large infusion centers don’t understand how to diagnose aseptic and tend to treat bacterial meningitis for an extended period. I was very sick from the meningitis treatment. We’re evaluating the possibility of adding SCIg to my treatment plan.
- This reply was modified 10 months, 3 weeks ago by Jennie Morris.
August 25, 2021 at 3:06 pm #16879AnonymousInactive
Thank you for your posituve feeling of IVIG.
My experiences with it were terrible.
I landed in a hospital in a coma, diagnosed with Acute b respiratory failure.
My wife told them about MYASTHENIA GRAVIS. MY doctor was reached. Not a cool meeting. Plasmapheresis C was started.
I wouldn’t recommend your to anyone. Thank GOD you are alive. Sincerely. Stanley Schildkraut
August 25, 2021 at 9:36 pm #16883
If you’re not weary of IVIG chat yet…
I am about to get a chest port installed to facilitate my aggressive schedule of IVIG. I sit in the infusion chair for 4 hrs, 2 days straight, every 3 weeks. This regimen has helped me very much, but has wearied my veins, and a port seems necessary. Before my next infusion, I’ll stop by radiology to have in put in.
Not crazy about the idea of a port, but if it removes the infusion discomfort and the difficulty of the IV Team vein search, it’ll be a good thing.
Daily, along with 3wk schedule of IVIG:
480 mg Pyridostigmine
300 mg Mycophenolate
August 25, 2021 at 10:48 pm #16885AnonymousInactive
Tim my good man, I’ve a Shiley port that’s in my chest. I’m getting plasmapheresis done once a month. The up feeling lasts about 3 weeks. A sometimes gentle slide after that.
IVIG almost killed me. The doctor ran away. His professed knowledge of Myasthenia Gravis was just that. After a coma and rehab with little or no muscle use in my legs, I tried reaching him maybe about 25times. Better for me.
If your neurologist knows the benefits of plasmapheresis, infusion without the vein punctures. Research it, very few patients who complain.
Just be careful, be well. Remember, with plasmapheresis there is a better way. I’m in Brooklyn New York, if you need doctor referrals I will gladly provide them. I’m using MAIMONIDES CANCER CARE.
Don’t let the name fool you
Best of everything. Stanley Schildkraut
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August 26, 2021 at 6:28 pm #16917
THANK YOU STANLEY…
I am happy you found something that sustains and strengthens you in your MG journey. I have read some about the plasma therapies but have not discussed them with my nuero’. I am having a port put in next week – not sure if it’s a shiley port or not – but it sounds like the same thing. I’m having it placed because my veins don’t like the frequent IVs. I was asked early on if I wanted a port, and declined for personal reasons, but now it seems necessary.
My treatment is helping me much the way you describe your experience with plasmapheresis. My Rx and the regular IVIG treatments have me on an upward strength trend. I can basically decide the IVIG schedule according to how I feel. I’m hoping to stretch it out soon to 4, even 6 weeks apart. I’m not sure I would want to interrupt that right now. If my situation changes, I would certainly be looking for alternatives.
I receive all my care via Veteran Health – my neurologist has been amazing in guiding me through this adventure. My Pri-care Dr always defers to him about my MG.
I’m do not know if the therapy you use is even available to me in the VA system, but if the IVIG slows my progress or causes issues, I would be asking questions about it.
Thanks again for your encouragement & best to you as well.
August 26, 2021 at 8:41 pm #16920AnonymousInactive
I am not a VA PROPONENT. At the Brooklyn NY VA almost all MG patients are sent to Private Hospitals. Very few VA doctors know much about Myasthenia Gravis.
Although bills are paid by the VA, all treatments are done by civilian Doctors.
You’re told your veins are not up to snuff. A Shiley port is placed and your veins are not bothered. Oh yes standard CBC AND INR tests are done. Seems you’ve been “Vein Washed”.
I’ve never set my own routine. Something is not jiving. Speak to a civilian doctor. Oh ask you VA NEURO which school he went to.
With all my best wishes, be well. Remember. Start Advocating for yourself
August 27, 2021 at 8:32 pm #16934Jerry TrappParticipant
I received 4 IVIG treatments last 11/20, 12/20, 01/21 and 02/21. All went perfectly and I had no side effects. Also, I could see on good effect either, so I discontinued them after 4 months. The treatments were done at my home with a visiting IVIG nurse. All of them took 2 days to complete at about 5 hours/day. The reason I quit doing them was – number 1 they did not seem to be effective at all, number 2 they were very time consuming and expensive (I was receiving them for free due to financial assistance) – but the billed cost was over $6,000/month – the Medicare cost was less – the first treatment does throw you in the Medicare drug do-nut hole for the rest of the year. I had no side effects except some bruising at the IV injection site which is a training/experience problem with the administering nurse – otherwise, I would have never know I was getting the IVIG. It has now been 6 months since my last treatment and I am still stable with my MG symptoms – so, it is possible the IVIG did some good, but I have not experienced any changes in symptoms since quitting the treatments. I would be happy to answer questions if anyone wants to ask. I am an 81 year old male diagnosed with Generalized MG about 30 months ago – taking 180 MG Mestinon and 15 MG Prednisone per day and doing okay – a lot of muscle weakness and continued issue with left eye (Ocular MG) and very heat sensitive – sweat like a race horse when exposed to much heat.
August 27, 2021 at 9:34 pm #16937AnonymousInactive
Hello Jerry, so glad to hear from you. Your doing the IVIG at home was presented to me. The experience of nurses led me to say no to homebound treatment. I took the IVIG for over a year, the one result was I lapsed into a coma April through October 2014. Almost died and my Doctor wanted to continue the IVIG, he told my wife and daughter “Give it Time”. He was relieved of all duties. Plasmapheresis was begun, I’m on the same treatment to this day.
Once a month, no veins breaking down. I wear a Shiley port. I have more up days then down. I walk about 21/2 miles daily.
I take 900mg GABEPENTIN, Pyridostigmine and Warfarin. You’re mixing MESTINON and Prednisone(?). Your muscle weakness is right there. Ask your doctor to speak with some of his other successfully treated patients. I’m sure they are few
Good luck Mr Octogenarian
August 29, 2021 at 6:50 pm #16957Jerry TrappParticipant
Thanks for your kind response. It sounds like you are saying that taking both Prednisone and Mestinon is a bad idea and is causing my muscle weakness. That is news to me and would love more input regarding that issue from your are anyone on the blog.
August 29, 2021 at 10:54 pm #16958AnonymousInactive
Thanks for the sound of your voice. I’ve found the more often we hear from one another, the better we feel.
I have a Shiley port in my left shoulder. My
<p style=”text-align: right;”>veins aren’t bothered be an additional phlebotomist. I took Prednisone and MESTINON together back in 2012-2014.I swelled had trouble standing, swallowing and speaking. Ending up COMATOSE from April-October 2014. Acute Respiratory Failure caused by the cocktail I took and a doctor who, as far as I go knew S–T FROM SHINOLA. BE YOU OWN ADVOCATE. No one else will. I as will all of us always be honest. No big shot just offering what we went and are going threw
Sincerely. Stanley Schildkraut
August 31, 2021 at 5:36 pm #16976
Hi Jerry. I was diagnosed over 8 years ago with MG. I had severe weakness and double vision. My neurologist started me on mestinon for the first 2 weeks then added prednisone doses slowly until I was on 30mg every other day. I saw a dramatic improvement but it did take about 6 months. She then tried to take me off prednisone and the symptoms started to return. So we slow started cutting back on prednisone in 2.5mg doses and I was started on cell cept also as this was going on. I currently only take mestinon 120mg mestinon 4 times daily and cell cept 500mg twice daily.
August 31, 2021 at 9:09 pm #16978AnonymousInactive
My Dear Anne Marie. You’re an old timer. 8 years with an MG diagnosis that’s under controlled.
My diagnosis came in 2012, my path has not been easy. The cocktail of MESTINON and PREDNISONE almost killed me.
IVIG 1 a month, 5 hours of an IV with my Doctor telling me I looking better. April of 2014 until October of 2014 I was comatose, acute respiratory failure.
My doctor was unceremoniously let go. I was given Plasmapheresis ever other day. I came out if the coma, it was a while until I was able to eat solid food or drink liquids.
I’m home since May 2015. I take Mestinon 90mg three times a day
I wear a Shiley port. GOD has given me my life again. By HIS GRACE we will be married 50 years on September 12.
I’m so glad to hear of your progress.
You friend and supporter. Stanley Schildkraut
August 27, 2021 at 11:01 pm #16939
Jerry, thank you for sharing your experience with MG and with IVIG treatments. One of the interesting things about MG is how differently it affects everyone, and how differently the various treatments help or hinder. It seems that indeed no two are alike.
I’m glad you have found a regimen that works best for you. I was diagnosed with MG last September. I have learned so much since then about the disease, it’s effect on myself and others, as well as the variety of treatments. I have generalized MG as well. My issues are mostly with my speaking, chewing, swallowing, and breathing… All pretty important!
Mestinon was my initial therapy, later some IVIG was introduced, and later still I started on Mycophenolate. I have a tremendous neurologist who has guided me through my dark days to a very good spot now. My improvement since my low point last fall has been nothing short of amazing.
My flares now mostly involve my speaking strength. I’m a public speaker, and so this has been a real challenge for me. I am 11 years younger than you, so I appreciate your courage and strength and endurance.
I wish you all the best. Like you no doubt, I’ll be glad when the temperature lowers a little bit. These hot days are very hard on we who suffer with MG. Particularly, as much as I like to get outside for yard work and golf.
Be well and safe.
August 28, 2021 at 10:45 am #16943AnonymousInactive
Thank you Tim. I was diagnosed with MG towards the the middle of 2012. Yes I have, to this day trouble swallowing, slurring words, my left eye sags and my general strength wanes on different days. Yet I consider myself at least 75% more fit today then I was when I was diagnosed.
My medicinal cocktail might not work for everyone, but it is very well tested(by me) so it doesn’t kill me. My neurologist isn’t a soothsayer, he’s a good doctor. He’s been able to work with me since my becoming COMATOSE in 2014. My initial dance with a neurologist almost killed me, he prescribed what he wanted to, used IVIG, almost killing me.
Be careful, our doctors are practitioners. They “Practice”. Your diagnosis is relatively new.
Thank you for helping Jerry with kind words. I’m a chemical engineer with about 50 years in my field. I know some things, not all things. I’m glad both of you Jerry and Tim are feeling better. Watch your medicine, watch your doctor’s advice. Hopefully old timers like me will always be around to advise you. As I generally close with, GOD BLESS YOU. If you don’t feel well after a treatment get another doctors advice.
August 28, 2021 at 9:11 pm #16952Ella GuthrieParticipant
I have been on IVIG infusions for about 3 1/2 yrs now. I had to have a port put in because only my right arm can be used to blood drawing or inserting needles for infusion. It’s much better with the port, as I have 4 days of treatment every month. Sometimes by the time I am due for the treatment, my eyelids are drooping heavily, halfway down or more, and I am feeling very fatigued. After treatment, sometimes, I am very tired and sleepy; sleeping the rest of the day and all night. Repeat the next day. Then I am good, with eyes wide open and feeling more energetic. Have had no bad side effects as have been described above.
God bless you all and best wishes for better outcomes.
August 29, 2021 at 5:12 pm #16956
Ella, thank you for sharing your story. It was very encouraging to me, since my IVIG journey is only about 9 months old. I am to have a chest port put in for my infusions this coming week. Like you, my veins got weary of the IVs, and it looks like I’ll need these infusions for some time. It seems like you spend a lot of time in the infusion clinic. I go for 2 days every 3 weeks. I’m hoping that I will improve enough to stretch that time out some.
Some have had bad experiences with IVIG, but mine is much like yours. No real issues except some fatigue for a little while after. I’m thankful for this treatment, and it has helped me get back to about 75-80% of my pre-MG diagnosis strength level.
God’s blessings for you as well, and continued strength and health.
September 1, 2021 at 5:55 am #16979Dave HawParticipant
I will share my reader’s digest version. Diagnosed in 2013, my neuro wasn’t a MG specialist so I suffered double vision & droopy eyelids and fatigue. Pyridostigmine and prednisone at high dosages with major side effects that were worse than MG.
I found a neuro who used to specialize in MG. She got me on IVIg at home 6hour infusions. It was awesome for me. My vision was almost normal, my fatigue was like over exerting but liveable. I had the treatments every 3 weeks for 6 months. Then my insurance denied my infusion treatment. My neuro was so mad, she fought with the ins. Co. On my behalf but 3-4 mos. Passed Before i was re-approved.
The IVIg didn’t work anymore and my conditions worsened. My neuro switched me to Soliris but i hsd to go to an infusion center. The infusion took 35 minutes and halfway thru the bag my eyesight was normal. I stayed on Soliris for 16 infusions (4 loading doses, then every 3 weeks) then covid19 hit February 2020. I was immediately told to isolate and stop the infusions to keep me away from the infusion center. My vision has stayed stable so I’m not getting treatments although its approved. Currently on pyridostigmine er 180mg and 2x 1000mg Mycophenolate. I did have a VATS thymectomy 2019(minimally invasive) to no avail so far. My Vision acts up but i can handle it and the fatigue. I do suffer some side effects like runny nose, ibs, cramps, watery eyes, blurry vision – thankfully not all at once. I’m an easy stick never had infusion or lab issues. No infusion reactions aside from a sore behind from sitting. Thats my story. Infusion treatments worked for me, better than the pills. Stay safe everyone!
September 1, 2021 at 10:26 am #16980AnonymousInactive
‘Morning Dave, thanks for your “Tale of Good and Bad” reactions.
I went through IVIG because my neurologist through nepotism was the smartest about everything. He convinced my wife and I his word was MG LAW. I underwent a 5 hour single fiber exam. A needle in my back that did assure my having MG.
I was placed on Prednisone, Pyridostigmine, Paul and more. This wonderful “Cocktail” along with IVIG, monthly 5-6 hour infusions land me in a coma from April through October 2014. The Infusions and medicines combined to mask MG as Acute Respiratory Failure.
My wife and brother opened up about MG.
The explanation that the IVIG stopped working didn’t fly with the doctors. Something works or it doesn’t. Two MG specialists re-diagnosed the MG, I was placed on plasmapheresis, an infusion of Albumin, filtering my blood and feeling stronger a day or so later.
It’s years later, I wear a Shiley port in my chest. My veins are safe from the nurses needles. The meds are 90mg of pyirdostigmine 3x a day. I take other medicines for other conditions, no else for MG.
Sure my left eye droops but not terribly. The strength in my left arm is half what it was. I use a support cane. That’s it. I walk about 21/2-3miles a day. When I’m tired I rest.
Plasmapheresis works. It doesn’t stop working. I wish you the best always.
Speak with your Neurologist. See what he or she says. If there’s any way I can help let me know. Prayer and meditation work. Honestly I’m big on prayer, not do with neditaion
My best to you Dave. Be well
September 1, 2021 at 2:38 pm #16981
I read with great interest regarding the robotic thymectomy. My removal was manual and by orders of the neuro to the surgeon, “get every speck” even that fats that the gland is cradled in. I programmed industrial robots and the kids coming up were better at it than I was, My wife has had both knees replaced robotically so I am not averse to technology but my success with the thymectomy was so wonderful and my recovery so complete I am heartsick that removal does not work for everyone like it did for me.
On a final note. at the top left corner of the typing box is a BOLDED letter B. If we could all remember to use bold the this thread would be easier to read! Especially for me. The light print on white or blue background is difficult.
I told my doc that I would know when I was back to normal would be when I could pick up my end of a piano and walk off with it. I did it! Then I never done it again. My doc said “Here’s your sign”
September 1, 2021 at 2:42 pm #16982
The “B” thing did not work, the type reverted back after posting. Selected the visual block top right and then B for bold and my result may have changed.
September 1, 2021 at 3:02 pm #16983
I have deduced from this blog that each case is full of similarities “all the time, sometimes”. I cannot mention enough how pleased I am to have found this blog. Now I know I just may be human, not necessarily normal. Now I have ammo for older age and MG stuff. I was never lazy, now I am. I even put off procrastinating. Dave Haw, there is no such thing as a “Readers Digest Version” or keeping a long story short. Look how we go on. Leave happy tracks for others to follow.
September 1, 2021 at 5:44 pm #16985
Dear Stanley, I see your are an old timer with this too. I had a long road to diagnosis. I had complained for years that something was wrong but the symptoms came and went. They tested me for everything but MG and concluded nothing was wrong with me and wanted to start me on an anti depressant, I was made to feel like I was a hypochondriac. I refused to take the anti depressant because I knew I was not depressed. I developed a sinus infection and was put on amoxicillin which is not good for MG. Well about a month later the symptoms got worse and when I was on the treadmill I had extreme muscle weakness and went down like a ton of bricks. I broke my nose and had double vision that did not leave, I went to the ED and they thought I was drunk. They thought I had a stroke or heart attack. It took me a month to get into my neuro opthamolgist. She immediately knew what was wrong after she looked in my eyes. She gave me a shot in the office. 30 minutes later the double vision was gone and was started on mestinon. After looking at my chart she said I had MG for years. She also said it was good I did not take the anti depressant because it would have made me worse. It took along time to learn my new normal, I was used to pushing through the fatique and I know I can’t. Prednisone in the begining really helped me and was slowly taken off and put on cell cept with the mestinon. Sorry about the length. I tend to go on. It is nice to talk to people who really understand. My husband and I will be married 41 years Sept 20th. God bless you and your wife. May you have many more happy years together. Ann Marie
September 27, 2021 at 2:49 pm #17277
What problems did you have with amoxicillin? Last March I had some amoxicillin for an infection. Within 2 hours I was vomiting, diarreha, very rapid pulse, very low blood pressure, and couldn’t breath. I was taken to the ER in an ambulance. I received 4l of hydration, some other stuff through my IV port and my kidneys were shutting down. Very scary.
September 2, 2021 at 3:40 pm #17009
Had my IV chest port put in this morning. In IVIG clinic now. I come every 3 weeks for 2 days. Pretty sore right now from installation procedure, but expecting much smoother infusions with this port. No more IV Team vein search missions or arm pain. Hoping soon to stretch out the need for infusions and one day skip them altogether. Until then, I’m thankful for good care from Neuro & Infusion teams at VA, Indy
September 22, 2021 at 8:29 pm #17238
Tim, You will bless the day your port was installed. I went about a year on needle sticks. It was so bad the IV team couldn’t get a needle in to hold up. One day 7 people tried before one got a needle in through my hand.
<b>The needle would hit a good vein. Mostly the push/pull with the syringe would work but one th infusions started it would blow out he walls of the vein. After that day I had my neurologist order the port. My next round of infusion worked wonderfully. Almost every time the port is accessed on the first time. The port is also good to do blood draws from. I get them done the same days os my infusions.</b>
I am scheduled for my next round at Roudebush next week 9/27, 28, and 29. Maybe I’ll see you there.
September 22, 2021 at 9:07 pm #17240
Lou… Thank you for your note & encouraging. I believe you are right… I certainly won’t miss the vein IVs. The IV team at Roudebush is excellent but was about to tell me they couldn’t service me anymore. The port install is healing fine.
I will likely be on a 3 or 4 week schedule for IVIG for a while. Also, when I need to do blood draws, I try to schedule them with my IVIG visit & my Pri-care sends the orders to infusion clinic. Saves me a stop downstairs.
My next visit is next week, Sep 29-30. I show up when they open the doors about 7.30. Would love to meet you & say hello.
September 27, 2021 at 2:56 pm #17280
Tim, I get to the clinic about 8:15. Say Hi when they check me in. I put my stuff in my chair down at the end and hit the head so I am ready to accepth the infusion. See you Wednesday.
September 21, 2021 at 3:48 pm #17229Bret KraussParticipant
I have been going for IVIG treatments for the last 20 years and go for 2 days in a row every 4 weeks. I get 150 grams over the two days. When I first started going for it I handled it quite well and got the odd Migraine afterwards and for the first couple days after the treatment felt a little tired. after a few years I started to get Migraines pretty much every time I went so to help with that they started to take my stuff out prior to my treatment and warming it up to room temperature and then the Migraines pretty much went away. Unfortunately within the last few years the migraines have came back again even with them warming it up to room temp so I have recently started the SCIG home infusion program and things have been going very well so far with that. I have done my third treatment now and I have not gotten ay side affects so I’m hoping this works. It should help quite a bit more because I do treatments once a week so it keeps my levels up and its smaller doses to minimize the side effects. When I first started going for IVIG this home infusion wasn’t even an idea so its pretty cool to see the advancements that are being made.
September 21, 2021 at 7:37 pm #17231Bret KraussParticipant
The IVIG has helped me so much it has given me somewhat of my life back. Before I was diagnosed I couldn’t walk 500 feet and would fall down and wouldn’t be able to get up by myself it was horrible going from playing every sport and never stopping to that. Huge mental strain!
Now with the Mestinon, Prednisone, Azathioprine & IVIG treatments I can actually hold a full time job and do some physical activities like skiing, biking & hiking obviously taking tons of breaks while doing those activities but none the less able to get out there and do them at my own pace.
I don’t even want to think about what I would be like without the IVIG treatment. and now like I mentioned I have just recently started the SCIG Sub-Q home infusions which are going great so far.
September 27, 2021 at 2:52 pm #17278
September 22, 2021 at 9:03 pm #17239David DavidsonParticipant
I started my IVIG’s in the hospital 5 days in a row. In 2014 after I had my Thymus removed and they also found a cancer in my chest. When I went in I had trouble breathing, swallowing, double vision, chewing, weakness in neck, arms hands, bowels and speech. The IVIG treatment helped, no side effects. After I got done with the radiation I got better and the MG went into remission for 2 years then started back again slowly. The double vision came back then jaw weakness, in about a year I was back to where I was 3 years before. I started IVIG again and it did not help as much. So I started Soliris, it gave me the boost I needed. I function almost normal now. I still get 2 infusions of 80 grams flebogamma a month and 2 infusions of 900mg Soliris a month. I also take 3 to 4 180mg mestinon SR, 5mg prednisone. I get my Mestinon SR out of Canada (lots cheaper than medicare) I don’t take any of the premeds with the IVIG. I walk 2 miles every day and very active. Good Luck.
September 23, 2021 at 4:16 pm #17253Leora DianaParticipant
<b>Hi. I was diagnosed in 2010 with a droopy eyelid and double vision. Initially went to my ophthalmologist who sent me to a neurologist who diagnosed my MG. I had a benign tumor on my thymus so that was removed within a couple months of diagnosis. Literally the moment I woke up from that surgery there was no double vision and no eye droop. I had a relapse in 2018. Tongue swelled, slurred speech, trouble swallowing. Lost 28 pounds in less than 6 weeks. I was given a set of 3 IVIG infusions with no side effects and complete success as all symptoms went away. The first infusion resulted in my feeling like I was a whole new person. More energy than I can remember ever having. I am not athletic in any way, but I felt like I could run a marathon! The 2nd was fine, and I still had the, “Whole new me” feeling. By the 3rd, I was still fine, but was back to feeling like my old self, which is fine as long as I don’t ever get those symptoms again! I have to say, I wish I could still get infusions, with the hope of feeling that good again, but instead I take Prednisone and Mestinon every day and only suffer from muscle fatigue if I overdo things. Hope I am able to stay this stable from here on out. Best of luck to everyone in dealing with this strange disease. At the very least, it’s an interesting journey. </b>
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