I just had my 2nd IVIG. I have generalized MG and it really encreased my muscle strength! I wish I had asked for one before now. I was dx two years ago. MG is progressive, if the cause isn't treated it could get worse. I have been taking a low dose of prednisone and Imuran for two years now.

If you do have one, ask for Benedryl and Tylenol at the beginning of the infushion. Also hydrate very well a couple days before during and after. Lastly, make sure they start with a slow drip.

On the home page of this site on the bottom left is list of treatments/medications for MG and their effictiveness.
Good luck!

are you on mestinon?

Sorry to hear you are having problems. Vision issues were very distressing for me too, although breathing was more critical.

I haven't had IVIG, but if your insurance covers it and your doctor recommends it--it seems worth trying. It is very expensive so making sure the costs are manageable is important. I was offered it, but was handling prednisone OK, and didn't want to get tied to a treatment that would keep me tethered to a hospital every month or so. My doc said the IVIG could keep me functional while waiting for the immune suppressing drug of choice to kick in. I kept it in reserve and didn't have to use it.

I was not as optimistic of getting back normal vision with treatment as was my neurologist, so I attempted to adapt to life through one eye with the lid half open at times.

I alternately patched one eye and started adjusting, with reassurance from two of my friends (not with MG) both having single eye vision, one from birth and the other for about 2 years. Both said they didn't feel cheated with monocular vision--and did everything OK with one eye. There were worse problems another friend who was losing all of her vision and adapting, told me. I also tried a prism for double vision -- which never really worked.

When I had blurred vision, I found using my computer and ebook reader zoomed high kept the reading part of my life functional. I also had many visits to my eye doc for refractions and got several prescriptions of varying strength and bought half a dozen cheap eye through online Zennioptical (at about $15 a pair) and swapped them as needed. A pair for TV, pair for computer, pair for driving, pair for book reading etc. A friendly optician can explain how to vary the prescription yourself by adding or subtracting a little.

Mestinon never was strong enough to get rid of the double vision for me (it did help some, but not enough to unpatch my eye). Prednisone at high doses got rid of it totally. I was relieved to have normal vision again, but realized one eye at a time would have worked.

Good Luck

Hi there..I havent had ivig either...I have mostly the ocular kind of mg so far and have been dx for 6 years..God willing will stay that way but MG is a roller coaster so never know...But started off taking prednisone and mestinon, then had a thymectomy....Had to stop the mestinon due to serious stomache issue which still exist...So now am just on the prednisone 2.5mg per day and between that and operation so far has helped the double vision blurriness etc...I pray everyday will stay that way.....My eyes though every time I go to eye dr are worse so my glasses have become stronger and cant see a darn thing without them but better than the alternative.....So good luck if you do the ivig..Hope it works for you...

For diplopia and ptosis, the usual meds include Mestinon, steroids such as Prednisone, or other immunosuppressants. IVIG is usually a secondary medication in conjunction with the before mentioned.

This study states that was NO additional benefit of 2g/KG over 1g/KG of IVIG. So share this with your doctor.

Treatment of myasthenia gravis exacerbation with intravenous immunoglobulin: a randomized double-blind clinical trial.

BACKGROUND:
The optimal dose of intravenous immunoglobulin (IVIG) in acute exacerbation of myasthenia gravis remains unknown. Increasing the treatment duration might provide added efficacy.

OBJECTIVE:
To determine the optimal dose of IVIG for treating myasthenia gravis exacerbation.

DESIGN:
Randomized double-blind placebo-controlled multicenter trial designed to demonstrate superiority of the 2 g/kg dose over the 1 g/kg dose of IVIG, conducted between November 13, 1996, and October 26, 2002.
PARTICIPANTS:
One hundred seventy-three patients aged 15 to 85 years with acute exacerbation of myasthenia gravis.

INTERVENTION:
Participants were randomly assigned to receive 1 g/kg of IVIG on day 1 and placebo on day 2 (group 1) vs 1 g/kg of IVIG on 2 consecutive days (group 2).

MAIN OUTCOME MEASURE:
Improvement in the myasthenic muscular score after 2 weeks.

RESULTS:
The mean improvements in the myasthenic muscular scores after 2 weeks were 15.49 points (95% confidence interval, 12.09-18.90 points) in group 1 and 19.33 points (95% confidence interval, 15.82-22.85 points) in group 2. However, the difference between the 2 groups was not significant (effect size, 3.84 [95% confidence interval, -1.03 to 8.71]; P = .12).

CONCLUSION:
This trial found no significant superiority of 2 g/kg over 1 g/kg of IVIG in the treatment of myasthenia gravis exacerbation.

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Here's a good read (PDF) on Ocular MG.
http://www.mgawpa.org/pdfs/Medical/Ocular%20Myasthenia%20Gravis.pdf


Enjoy.
DM

Hi, I also have ocular MG ub have symptoms of generalized MG but all tests have come back negative for generalized. I have been on Mestinon for the last 6 years and it helps me for the most part. After I take the Mestinon my eyelids raise and the double vision gets a little better but does not go away completely. I was told that Mestinon may not work for ocular but thankfully it has with mine. I have found out that I have to play around with the dosage of Mestinon though because if I take it too often it makes me sick. I take one 60 mg in the morning and one about 2 pm. If I am having a bad day I will take another one around 7. I have found out that if I take it every four hours I start to feel sick. Good luck. Everyone is different so I hope you find something that works for you.

I'm on mestanin at maximum dose. I have diabetes and prednisone is not an option as I'd have to add a 4th diabetes medication w/a complicated dosage schedule. In addition to the diabetes issue, I don/t like the side effects of prednisone. The mestanin is no longer working and the double vision is becoming worse. Thank you for your feedback and suggestions.

Here's a list of meds for MG with some alternatives and dosage range. Predinsone is the best for ocular unfortunately.

http://neuromuscular.wustl.edu/mtime/mgrx.html

Deb,
Hi, I just had IVIG at the beginning of this week and my last treatment was 2 days ago. I have treatment resistant ocular MG symptoms. Today my left eyelid which was totally closed and would only open if I taped it open,suddenly opened half way! To my family and I, this is a minor miracle.

I have had mostly ocular MG since 2008. Since then I have at different times been on Mestinon, Prednisone, Cyclosporine and Imuran (also had Thymectomy). For some reason, in the past 2 years my ocular symptoms became treatment resistant with constant ptosis and diplopia no matter what the dose of meds. I visited the Mayo Clinic and the Neurologist there recommended IVIG. I have been told by several Neurologists that the ocular MG symptoms can be the most treatment resistant.

The only side effects that I have had so far is that I wake up with a moderate headache which is easily treatable with Tylenol and based on this support group, I stay hydrated by drinking lots of water. It is too early to tell, but I am encouraged at this point from the results of IVIG.

I was very hesitant about IVIG and I scoured the internet for every medical study I could find. The most up to date study I could find was a German study published in the December 2014 issue of "Muscle and Nerve" which is a publication for physicians. They followed 16 MG patients for 2 full years. None of the patients in this study had any serious side effects (although serious side effects are possible). The results were very positive with all 16 patients showing a decrease in both symptoms and exacerbation periods. Some were even able to reduce or discontinue Imuran. I would be happy to share this article with anyone who is interested.

If your symptoms are debilitating and you have tried most of the standard treatments (Mestinon, etc) without success and Prednisone is not an option for you, based on my very early experience with IVIG, I would definitely recommend that you consider having the treatment. To me, the possible reduction in ocular symptoms was worth the risk of side effects.
Dave

I was diagnosed in Jan or 2013 and when I went to the hospital with right sided weakness. I was treated with IVIg for 5 days and high dose of Prednisone. I got worse before I got better and on follow up Mestinone was added and then Imuran. IVIg was then added every 4 weeks. The prednisone cause retinal problems and severe heartburn so we had to pull back the dose. Imuran had to be changed to Cellcept because it was killing my liver. Because we are waiting for the immunosuppressant to kick in we have gone to every 3 weeks since on the third week I cannot even open my eyes at all. IVIg is the only thing that seems to help me. I do get a bit worse for a day or two but the week after is great (eyes start closing around 2pm and double vision gets more annoying as the day goes on) and I am able to do more. We have had to do some 4 week spreads because of vacations and holidays so I have had some bad weeks. I hope to stay on the 3 week more consistently until the Cellcept kicks in full force.

So for me IVIg has been a life saver. Yes it can be inconvenient, but I do mine at home scheduled around my work. Benedryl and Tylenol is an excellent suggestion and hydration is crucial. It is costly, my treatments copays (thank you O care) went from $40 to $75 this year so if other stuff is working no need to add on. It is a human product so there is risk but quality of life is the question here and we hope the manufactures have responsible QC.

That's my 2 cents, best wishes!

My 17-year-old son was diagnosed in March 2014. He had a thymectomy in July 2014. His symptoms went from generalized to just ocular. He started having IVIG treatments six months ago and currently has an infusion once every three weeks. He feels they help and we have noticed a difference in his stubborn eye that causes him the most grief, but he still has blurred vision.