Hi there,
I just had it 2 weeks ago. It has really helped. I am still taking Mestinon but I feel better and my symptoms aren't as severe. They gave me benadryl with it which zonked me out. I wasn't bored, but very sleepy. If they are going to give you benadryl, you might want to have someone drive you the first day to see how you do.
I did get some headaches and low grade fever, but it cleared up with ibuprofen.
The other thing I noticed is my hands and feet got really cold during the infusions. I'll bet that is more of a woman thing, but I took gloves with me and that made me a lot more comfortable. Drink lots of water and think positively. I think it is a great treatment. It is very expensive, which made me very thankful to have good health benefits. Good luck and let us know how it goes!
Best to you...
ASB

Thanks for the feedback...I'll let everyone know how it goes!

I have it for 5 hours every 2 weeks. The amount of time it takes depends on the infusion rate you are able to tolerate. The best advice I can give is hydrate, hydrate, hydrate and protein, protein, protein. It is a plasma product so it thickens your blood and that takes a few days to re regulate. The water will help move it through faster. The protein helps your body process it easier. Those two steps will be your best shot at avoiding a headache. The other side effect that is common is high blood pressure if the infusion rate goes too high. Don't be shy to tell the nurse if you feel anything strange, this helps them determine what infusion rate is best for you.

As for the process, they will start you out at a very slow rate and monitor your vitals every 15 minutes, then increase the rate each hour until you hit your max flow rate. For me the benefits come on about 24-48 hours post infusion but I have severe generalized MG. I am not familiar with it's application in OMG. For me it is my miracle treatment though.

I wish you the best of luck!
Jen

Don't let them "push" the drugs too fast. My daughter did fine the first day on a 5 hr push so they cut it down to 3 on the second day and she got a severe headache that lasted two days and required major painkillers. But the results are good. Good luck. Sarah

IVIg is the only MG medication my body can tolerate. I take tylenol and benedryl right before they start my IV. I have it every 3 weeks and it takes about 5- 6 hours. I must have someone drive me because I am very weak afterwards. I am ALWAYS cold during the infusion, so they give me a blanket (or 2!) don't be afraid to ask for one. A pillow too. I get nauseous so I must eat to keep my stomach settled, and I drink ginger ale. I am very weak for a day or 2, then it usually kicks in and lasts about 1 week and a half, then I start to feel weak again and need to rest more often. I must plan any activities around those "good" days. If your insurance covers In-home treatments, that's the best way to go. I am now on Medicare so I have to go to the infusion center at the hospital or it will not be covered. Keep a positive outlook and try not to worry. As I'm sure you know, stress is NOT good for MG.
God Bless,
Magda

Evening,
I've been on IVIG for almost 2yrs, it is a great treatment. I also started out with OMG, but didnt need the IVIG until MG became Generalized several yrs later. As mentioned in previous postings, HYDRATE before going, during the infusion and afterwards. I am one of the unlucky ones who suffers from bad headaches after infusion, but noticed, if i don't drink plenty of liquids they get worse.
I know my The energy levels go up, and your eyes feel stonger. Its different for everyone but having OMG at first i noticed my eyelids staying up longer and not having to use so much Mestinon. I dont even suffer from double vision anymore.
Let me know how you do.
Norma

Thanks so much for the helpful postings! I'm now looking forward to the treatment and will certainly take everyone's suggestions about having lots of water and protein, and being aware of the need not to "push" the IVIG (which my neuro has told me about, too). I gather that this treatment is beneficial primarily to people with more generalized mg rather than just the ocular variety, but I think my neuro feels I'm beginning to show signs of generalizing.

How are you doing with the treatment?

My IVIG treatments start on Monday...I:ll post my reactions.

Good Luck!

I just finished a week's worth of IVIG therapy and amazingly my double vision has pretty much disappeared (about 80-90 percent improved!). I also don't have the droopy eyelid any more (at least for now). The IVIG involved spending four hours a day, for five days, with a tube stuck in my arm. The time passed ok...I read, listened to CDs, watched TV and talked with other patients going through the same thing, while resting on a leather reclining chair. I'll see my neuro this week to assess my bloodwork...I'm hoping I won't have to go back for this infusion therapy at least for three months or longer...and have been told it sometimes lasts for a year! I'm also hoping to get off mestinon, which I find I don't need following the IVIG treatment. The mestinon,apart from not really helping cure the double vision, upset my stomach and made me go to the bathroom much too often!

Bottom line: Based on my experience as of now at least, I certainly would recommend IVIG therapy to anyone suffering from MG.

I have had IVIG treatments for over a year every month. Unfortunatley it stopped working. for me. When it did work, they results were great. Good luck!

I hope everything went well for you. The first one is the worst because it is a learning experience for you and your medical team. Hopefully with your knowledge prep about it it went as well as could be expected. I usually feel lousy for a couple days after so if you are tired/flu like don't fret, things should turn around by Thursday.
hugs,
Jen

Thanks, everyone...It's now four days since my IVIG treatments and I'm still pretty much off the mestinon and don't have the droopy eyelid or much double vision (It's not 100% percent better...maybe 75%). No side effects...I've been taking advil every day, though, just as a preventive measure! I see the neuro on Thursday for my follow-up after doing bloodwork on Monday.

I normally get the migraines after my IVIG for a few days and I also get weaker for a few days post IVIG. but i have noticed a few times this chest pain/chest tightness. does anyone else ever have this pain?