I have a question for yall who do IVIG on a regular basis.. I had my first maintence dose 2 weeks ago- and have felt A M A Z I NG since about 3 days after the infusion.. It was the first time I felt semi normal in almost a year.. Then a couple of days ago i started feeling run down, turns out I got my childrens fever/cough/cold etc.. I felt just run down all over for a day and then today my speech and all over weakness/including my hands is returning it seems. still not NEARLY as bad as I was a month or so ago by any means.. but over the past 2 days the symptoms are defintely returning..
Do any of yall have your IVIG wearing off before that 3 week mark ?
Does getting sick make it wear off faster??

I'm not on any other meds- they are trying to keep me off steroids and immunosuppresants due to side effects.. I hope to stay off them as well!

Does increasing the dose of IVIG help it "last longer" or can only frequency do that.. Apparently i'm on a fairly small dose (30g)

Thanks agian for yalls help!! hope everyone is doing well!

I can give you my opinion. It appears I need IVIG about every 6 to 8 weeks. I can feel myself getting weaker as that time approaches. Thus far I have taken Imuran, CellCept, steroids, and Mestinon but none of those seen to help.

As for viruses and getting sick that happened to me about three weeks ago. At that point in time I was doing fairly well but was getting due for my IVIG treatment, at that point I got an infection or virus for two days. My general practitioner put me on antibiotics and it cleared right up. When the virus cleared up I became very weak maybe the weakest that I have been. I am currently getting IVIG treatments and have had three so far with no results. My Neuro called an increased my Mestinon to 90 mg four times a day. No results from that either. On two day notice he scheduled me for an immediate appointment. This setback has caused new problems, I have new issues with my eyes they both periodically want to close, overall general weakness is worse, cramps are worse in my legs and feet and my shaking has increased. So in my opinion getting sick with a virus or infection can really set you back.
I will try to remember to reply tomorrow after my Dr appt.
Mike

Many of us have found that the IVIg treatments work better the second or third time around. So if you have it again, you might get a better response.

Mike, are you sure that your set-back was caused by the infection, and not by the antibiotics you took for the infection? What was the antibiotic? Some of them aren't good for myasthenia.

Abby

It can certainly wear off that fast, especially when you have no other immune drugs on board. Infections, or even hormonal shifts can destroy the effects as well.

Thirty grams is not that small, especially if you are a small person, as the dosage is based on weight. Increasing either the dose or the frequency can make a difference--or not. There are many variables. Also, since you are early on in your MG journey, MG has likely not played all it's cards yet. The most rapid changes and "flavor" of your particular disease process usually shows within the first 2-3 years. In my experience, at least, there's not a whole lot you can do but hold on tight and try and stay afloat while you explore treatment options.

No I'm sure it wasn't the antibiotic because a few months ago my general practitioner gave me an antibiotic which wasn't recommended and my wife was with me and told him that I could not take that. They argued and he researched it while we were there and said she was correct and he apologized. We have since given him a list of drugs that I should not take. I don't know what I would do without my wife being by my side.
Mike

Hope everyone feels better! Hope symptoms get better!

Hey Mike!
In my experience IVIG can wear off more quickly with an infection. My first infusion acted the same as yours. Felt amazing for 2-3 weeks then quickly started to feel worse again. For me the IVIG has lost much of it's effect and is used to keep me from backsliding. As for my current symptoms and fluctuations, it doesn't do anything. I get 65g over two days once a month. The longer I stick to my scheduled 4 weeks the more stable I feel. If I do 6 weeks out or miss a month due to schedule conflicts ( there is only one nurse available for my infusions and the clinic is much too far away) I backslide so quickly, usually takes about three months to get back to "normal". And remember many many many things can set off the MG, may not even b that the IVIG is fading, but that your in a small flare? Hopefully you will find a treatment plan that helps stabilize your symptoms soon! And I hope this finds you strong and well.
Jess

thank yall all so much!!! I can't tell you how much it means to me to have yalls support/responses!!
After the first IVIG (the loading dose x 3 days) i felt a lot better, but part of me wondered if it was placebo effect as i SOOO wanted it to work, but then around 17 days after the infusion my symptoms started returning and i realized it defintely worked and worked well! then this time - the 2nd IVIG dose 4 days after was the most amazing thing ever!!! I even could run after my kids!!! (my hips have been sooo weak since this all started, I couldn't do the tandem(toe to heel) walk since.. and running - ha.. my hips simply didn't work, it was the strangest thing!! I had the BIGGEST smile on my face when I ran this weekend.. and then got sick : ( boo!
Those of you on immunosuppresants and/or steroids.. what has been yalls experience? Bad side effects? are the side effects worth the improvement in symptoms? I Just LOVED feeling good for the first time in so long, the thought of taking a medicine that make me feel bad I just can't do.. not right now! Do yall prefer steroids or immunsuppresants (one over the other)??
Thanks again, and Mike get well soon! I tell ya getting this virus has made me even more of a germ phobe! I'm praying I dont get the flu this year!!!! Thanks yall! hope yall are all doing ok!!
P.S - yall are wonderful, so glad I found this site!!!

Can you describe to me how weak hips affect you? I mean, how do they make you walk? I ask because after two and a half years, I still can't figure out which muscles are responsible for the different troubles I have walking. I did briefly work with a physical therapist (while I was hospitalized), who thought he knew, but I'm not sure he was right.

As for immunosuppressants: I have been on Imuran for ten months. The good news is that I don't experience any side-effects from it (but talk to Mike (PingPongMan) for a different story--it made him really sick). The bad news is that it isn't helping me, either. My neurologist is sure it's going to kick in any day now, and that it will help me a lot--he says his other MG patients have improved greatly on it. That's very different from the anecdotal impression I have from reading this forum--but I'm willing to keep trying for now.

I just read a study* that said that after three years, the benefits of Prednisone and Imuran were very comparable. It's just that Prednisone works more quickly. My symptoms are not dangerous (I have no trouble breathing), and my eyes aren't affected. Also, my kids are older and I only work part-time from home. For these reasons, I have chosen to try to slower route, because I'm scared of the side-effects of Prednisone.

Abby
*I'm sorry, I can't remember where. If this is important to someone, let me know and I'll see if I can find it

Thanks stellatum!!
As far as the hip weakness goes.. I knew it felt "funny" in my hips when this all started, I knew i had to waddle like a duck (wide gait for stability and to avoid that "feeling" in my hips... almost a feeling of stiffness/weakness/like they would come out of their sockets).. I would just tell the dr's my hips feel "odd" .. Then one day I tried to run about 20 ft when it was raining to my car, and it was just awkward.. my hips just didn't work like they used to, which used to I never thought about my hips!!! I just wanted to run, I ran! I couldn'tn even run those 20 ft.. couldn't run at all, so i got SOAKED by the time I made it to the car walking .. and walking wierd at that...
I havne't been able to tandem walk (the heel to toe walk the neuros ask you to do) without it feeling "odd' in my hips.. haha i know thats not very discriptive.. but I can't even explain it in words!

Thanks for the info on the immunosuppresants too.. I don't like the idea of suppressing my immune system and possibly increasing the risk of other illnesses while potentially causing side effects.. ugh. .. I can live like this for sure.. but it woudl be nice if the IVIG lasted longer. I do get breathing issues and swallowing difficulty.. when my IVIG wears off..so I may have to try something... I'll talk to my neuro on the 14th and see what they recommend... it's really interesting... and crazy how this all works!