MemberSeptember 1, 2021 at 5:55 am
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!
Deleted UserDeleted UserSeptember 1, 2021 at 10:26 am
‘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
MemberSeptember 1, 2021 at 2:38 pm
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”
MemberSeptember 1, 2021 at 2:42 pm
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.
MemberSeptember 1, 2021 at 3:02 pm
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.
MemberSeptember 1, 2021 at 5:44 pm
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
MemberSeptember 27, 2021 at 2:49 pm
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.
MemberSeptember 2, 2021 at 3:40 pm
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
MemberSeptember 22, 2021 at 8:29 pm
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.
MemberSeptember 22, 2021 at 9:07 pm
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.
MemberSeptember 27, 2021 at 2:56 pm
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.
MemberSeptember 21, 2021 at 3:48 pm
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.
MemberSeptember 21, 2021 at 7:37 pm
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.
MemberSeptember 27, 2021 at 2:52 pm
MemberSeptember 22, 2021 at 9:03 pm
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.
MemberSeptember 23, 2021 at 4:16 pm
<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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