Maureen I can understand your overall frustrations quite well and have been through the 5 day IVIG 5 times now. Overall it does take 4 hours out of each day, but its worth it at least for me as it works miracles for the next 2 to 3 months. If its a step towards a thymectomy which would be a step towards potential remission....its well worth your time.

For me it really does help all of my symptoms for a few months, including my eyes, swallowing, breathing and overall strength.

The process is not bad at all, basically boring, just be sure to drinks lots of water each day to help forgo any headaches. For me I bring some snacks and my iPad with lots of movies loaded on it for the week....books to read would be fine as well, or just music to listen to if your eyes are not cooperating. They give me IV Benadryl to start with which usually lets me sleep for a couple of hours.

By the end of the week you are getting tired but after a day or so your feeling better and within about 8 to 10 days for most they feel stronger and stronger.

Joe

It is not as bad as your mind is telling you it is. When I had my first one, I was already in the hospital with an IV anyway, so it was just a matter of taking tylenol and Benadryl and getting hooked up to a different bag of medicine. They watch you closely to make sure you are tolerating it ok and if you're like me the Benadryl will make you fall asleep and it will be done before you know it.
I have had Ivig and plasmapheresis, and of the two, Ivig is much simpler and safer, but unfortunately Ivig did not help me. It does help a lot of others, though.
Drink lots before, during and after because it is thick so it thickens your blood and this can cause headaches. You will most likely be surprised at how easy it is.

I have been on ivig every 2 weeks for almost 5 months. It does take about 3 hours start to finish. I feel a little tired for 24 hours,, probably because of the walk to get there wears me out. I feel stronger for about 12 days and then start winding down the last 2 days. Only down side is they are using all my veins. Some day I will need a port.
I will be starting cyclosporine next week. Also will be trying mestinon again, this time with another med to keep it from effecting GI tract.
Dee

Hi everyone, Thanks for the insight. I guess I really dont have much choice. Fact is i am just being difficult. I mean.. who wants to use time off from work for this.. only sick people do that... yea.. i am kidding myself but as the days go by and my faculties deteriorate, i am starting to see this for what it is.. an unavoidable treatment that probably wont be as bad as i think... and maybe i am one of those "sick people" that need to do these kinda things.. (maybe? Hard to admit to that) So... ill have a conversation with my boss, who really has no clue how i am doing since i travel 80% of the time and get her up to date on where i will be and what i will be doing and go from there.. Trying to hold ont a career through this is a challenge that may not be worth fighting for... i know i know.. so much to process...

Everyone reacts so differently to all the meds and the disease process is so variable with everyone. I have a nasty form of MG. Just last year identified in a Yale study as a separate form of MG, Refractory MG (mine is progressive/ a very rare form). I have been unable to tolerate any immonosuppressants (was very ill from them) and none of the other meds worked. I am on IVIG every other week at a 1/2 dose with a goal of slowing the progression of the disease. I already show central nervous system involvement. I ironically have worked as a clinician in neurology for over 25 yrs. I am currently still working as an admissions coordinator for an outpatient neurology center based in a hospital. I work longer days Mon-Thurs. and leave at 11AM Fridays. Every other Fri my nurse comes to the house to start day 1 of my IVIG. About 6 hrs and then 6 hrs Sat. I rest Sun and have recently been getting in to work on Mon. I am weak but my severe headaches are under control. I get IV solumedrol, an IV push of a strong anti-inflammatory, and 100mg benedryl before infusion and then 2 hours into the infusion. I also take Utram if I feel any pain coming on. This has kept the headaches and flu-like symptoms under control. I was getting not just a headache but a reaction to the IVIG called aseptic meningitis syndrome. I was out of work a lot and it took a while to get the right cocktail to control the reaction and pain. I have filed a formal request for reasonable accommodation asking to be able to work from home 2 days a week. I work for a rehab hospital that is run by the NYS Dept of Health so there is a process to go through. One of my assemblymen is backing me. It is still quite the fight. I like you, do not want to stop working. I do othing but work and go home mostly to my bed. My job is my life and my colleagues my family. Keep putting one foot in front of the other but do plan for what the future may bring and be creative....maybe you don't have to give everything up. Keep me posted. Barb.

Maureen, don't want to snag your post, but interested in what Barb said about her form of mg. How did they diagnose your mg. Is their a lab test for it?

Ive heard of this "refractory MG"... basically it means "resistant to treatment".. it came up in a conversation with my neuro, luckily she wasnt referring to me....so barb.. i feel for ya girl... .sounds like you work your work life and your "life-life" around getting these IVIG treatments... thats the thing.. just tonite i was out with friends and actually met someone who knows someone who has it.. rare right? After giving me the entire story of how sick she was and the meds etc that we all talkabout on here she said.. She is now in remission.. I as floored.. needed to hear more... so she kept talking and remission for her is: Large doses of prednisone and IVIG every other week. That is not the kind of remission i have in mind. She could see from the way my face fell that i thought she meant something different..like maybe some semblence of her life before... how is that possible when you are scheduling a 3-5 day infusion every few weeks.. its like crazy????? There has to be more hope than that...

Now all taht having been said.. snowflakes dont reporduce so i have to hang back and see what happens with me and go from there... breathe and take a day at a time.. sure the job is a priority.. im FAR from retirement have an 8 yr old and a life i would like to someday soon return to.. so i got to take a day at a time... get thru the infusions and see where they take me..

Barb.. prayers to you girl.. hope things get better... xoxo

M

Maureen thanks for your replies on this subject....honestly I would be thankful and feel a bit lucky that I had IVIG as an option. Certainly you would have to try it to see if it works for you, but many here just cant get this treatment approved, even though they desperately need it. IVIG is quite expensive per treatment and on average can cost about $20,000 per treatment cycle.

I know its time out of your schedule, but with MG that is something we all kind of get used to, feel fortunate that you have the time available as an option to recieve these treatments. There are many here that in order to function need to take unpaid time off of work and many that have lost there jobs due to MG.

I hope your 'life' includes remission as that is the goal of all of us here, if you have the chance for a thymectomy I would work towards that. It means some sacrifice but it is the best chance for remission.

Best of wishes

Joe

Joe you are right.. i will admit to feeling a bit sorry for myself... frankly i am having a real problem adjusting to the new me that needs to deal with this stuff and the reminder that i need to be thankful i have options is in fact tru3.. im trying.. i am just not there yet, so grasping at straws for something that may or may not exist... sigh.. we go from here.. thanks for responding.. have a great weekend everyone!

M

You know Maureen I am just a few steps ahead of you....A year ago I was just Dx'd and the symptoms were not too bad. Thats changed in a very big way and I'll tell you so has my outlook and my attitude. What many find with MG is tat after the initial diagnosis things do get worse more often than not. It seems the first 2 or 3 years set the tone for how will be doing long term. I know for me life as I knew it is truly over. Like you I work and enjoy my job and am very lucky to me working for MIT which has been very accommodating and understanding, but I also know that wont last forever. While you have the time, the treatment options I would pursue them hard and fast if there is to e a chance at long term remission or the ability to keep life's activities as you know them. I am not trying to scare you or anyone, but am trying to impress upon you the seriousness of this disease and the absolute respect it requires,.

Hang in there...this can be tough but you will find that with the support of a group like this and a good neurologist guiding you through the treatment options you can and will make it. Try not to hold onto the past, but plan for the future and work to make that the best it can be.

Joe

Yea, that seems to be the part I am struggling with.. I am having a few day long "pity party"... Thanks for responding.. I'll just see where all this takes me....im glad to see ivig worked well for you...

Thanks,

M

I get IVIG three days (mon-wed) every other week at the infusion center near the hospital. It usually takes about three hours from start to finish. I schedule my appointments as early in the day as I can so it doesn't ruin my whole day. I have to be there at 7:30 am tomorrow. IVIG gives me more strength than any of my other meds. I'm not like a lot of other people I usually start feeling better after the first dose. Once in a while it makes me tired, but just for a day or two.
Michele

The Thymectomy really helped me. I felt better immediately but that was before I was on medication. My opinion - totally worth it! Either way you can't go wrong, (except for the complications with surgery). I have never heard of it getting worse after surgery.

Good luck with your surgery!
R

Maureen, I'm in the same boat with your gift now; I've got to do IVIG before I can get this thymectomy, and while I'm trying to be grateful for the chance to get this therapy, I'm horrified by the idea of it. (I have a huge needle-phobia, and the idea of sitting with one stuck into me for hours is already giving me anxiety attacks!) I wish I had something more helpful to say about this other than that I'm also feeling pretty grim, but at least solidarity is a good thing, right?

Hi Maureen,

I probably would have felt just like you if I had started IVIG early in my treatment. I couldn't imagine finding time to just sit for 3 days every 6 weeks. After 3 years of trying to fins a treatment plan that worked, I was thrilled to have it approved by my insurance and to get started on it. Mestinon had stopped working. Imuran made me to sick, cellcept didn't work and thymectomy ,well, not sure, it may have helped me from getting worse. I have been having IVIG for 8 months and it has made a huge difference in the quality of my life. I have learned to make it a positive time. I have home infusions. The nurses are wonderful and really know what they are doing. I have 2 days every 4-5 weeks. My nurse comes around 8 and is done by 1:00. I have my IVIG area, a recliner in my sunroom, my laptop and printer nearby. I can work from home, until the benedryl makes me too sleepy. I nap, read, watch movies, have friends stop by. They bring lunch and we catch up. The only part I hate are the headaches I get, but most people don't get them. In 4-5 days I usually feel great and stay that way until a few days before next infusion .Lately, my biggest problem is catching every bug or cold that goes around, which causes my mg to flare.

Good luck!

Judith