Myasthenia Gravis Support Group

Myasthenia gravis (MG) is a neuromuscular disease leading to fluctuating muscle weakness and fatiguability. The hallmark of myasthenia gravis is muscle weakness that increases during periods of activity and improves after periods of rest. Although myasthenia gravis may affect any voluntary muscle, muscles that control eye and eyelid movement, facial expression, and...

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IVIG - What to expect?

cgreens
cgreens
Hello group,

I've completed my second day of of five on IVIG treatment. They serve me tylenol and benadryl before every sitting, and I feel the benadryl for a good couple to three hours afterwards. Never taken aspirin really or benadryl before this(no allergies). I guess I might as well say that me and pharmaceuticals of any kind were not really "acquainted" before MG. Anyway, I believe that drowsiness from the Benadryl is the only side effect I am feeling thus far(no headaches). I maybe a little better because my eyes are staying open pretty well tonight after this morning and afternoon treatment, but I am not noticing anything in the way of body strength. Maybe I am feeling a little more balanced, I dunno. My mind has my movements scaled back for safety still, and my guard is always up due to the nasty collapses and falls I've had recently. What should I expect to happen, how long before I should expect something to change, and for how long will it keep me there from the IVIG? Would love to hear form you all that have done IVIG. I am eating snacks and a full lunch while there, and I am drinking plenty of water as the group here told me to do, thank you.

Thanks, I hope all is well.

Also: They increase my speed as I go during the day, and my total time including the benadryl drip has been going just over four hours per sitting. Does that sound right?

Thanks again.

TJ
angepugin
angepugin
Hi TJ. So great to hear that your IVIG seems to be going well! If you are tolerating the dose they are giving you at the rate which runs it in over 4 hours which you seem to be, then that is absolutely fine. It's just if you are getting side effects like the headache that you need to consider slowing the infusion rate down. If you are comfortable at the rate you are at now I would stick with that. Don't get too disappointed if you don't feel better immediately. With me the IVIG took 7 to 10 days to show effect and then generally lasted 5 to 6 weeks before my symptoms started worsening again. It's a great sign that you are already experiencing some improvement in your eyes!! Best of luck for smooth sailing with the rest of the treatments! Let us know how it goes.

Ange
deleted_user
deleted_user
Hello TJ,

SOOOO Happy that you started IVIG and you are starting to feel some positive chnages.

I will be starting the process in 2 weeks. Please keep me posted ib your status
deleted_user
deleted_user
Wow, I couldn't spell IVIG before....now I've been scheduled for the process. Went to my Neurologist yesterday & he said he wanted to try that since my MG keeps getting worse. Glad to see the info here so I know what to expect. The only side effect the Doc told me about was the possible headaches.
cgreens
cgreens
Well, my wife was stating about how open my eyes were. I know I still have double vision, that is for certain. We have to be optimistic anyway....Keep the comments coming, group.

Much appreciated!

TJ
cgreens
cgreens
The eyes open deal is only on the day of so far. The day after I am still getting droopy eyes, with my left eye lower and wandering off to the side with the bad vision to make it look freaky. My arms and legs are still so heavy it is hard to get dressed. I hope I get better soon. I am taking treatments every other day and I have three to go! My hope is that IVIG will work and not hurt me, and my Cellcept will kick in before too long to help me out and IVIG will not be neccesary again...Is that wishful thinking?
newmugg
newmugg
Good luck with your IVIG. It can be a lifesaver.
txkiki53
txkiki53
I have completed 3 days of IVIG with one more to go. I did get a bad headache last night, but better today. trying to drink lots of water, good luck to all Annette
cgreens
cgreens
Hi Annette.


Are they giving you Benadryl and/or Tylenol before each sitting? My next one tomorrow will be in the ER and my Neuro is saying she doesn't think the Benadryl is neccesary, so I could ask them to not give it and refer them to her email but....
deleted_user
deleted_user
Hi TJ -

Glad you tolerated the IVIG well. I found it to be very helpful when I was struggling as you are now. I was never offered either Tylenol or benedryl and it went fine without. I think that's more your choice than necessity. The benedryl is probably given prophylactically to prevent anaphalxis. They can always get you out of trouble like that quickly anyway, so ask them not to give you the benedryl. That stuff gives you a hangover!

I found relief to kick in after the fourth or fifth day. I only had one treatment and it lasted about 4-5 weeks. Just see where this gets you. You can do it again in another month or so, if you need to.

Happy New Year!
Curt
txkiki53
txkiki53
I made it thru the 4 days and yes they gave me the benadrl and tylenol. I can say I am very tired, but part is I am sure I had elbow surgery on Monday. Now will go month to month for the treatment.
Good luck to TJ... Annette
txkiki53
txkiki53
Well, I can say last night my eye was more open so maybe just maybe it is working...Annette
cgreens
cgreens
All done, and I don't want anymore. I got them to leave me without the benadryl for the last three sittings. On my thrid sitting, when they maxed me out, I got cold sensation moving towards my heart and my pulse went up 50, and I quickly had them turn it down and was alright. Anyway, now I wait for the benefits and I am feeling a little more spry. Basically, as of now, the night of my fifth and final treatment, I feel my swallowing is a bit better and my eyes are more open. I would trade my eyes a bit for some strength though. I have yet to feel more strength either in my arms or legs. I am hoping that some, if not all of this result is too early to be from the IVIg and hoping that it is from the first month of Cellcept completed, but who knows. I am holding hope that after the benefits of IVIG have come and gone, that my cellcept will be there helping me out...Time will tell.

Some things I found, here is an IVIG comparison chart(mine seemed to be the tops on the list(i.e 5% DIF flebogamma):

http://www.biorx.net/IVIG_chart.pdf
deleted_user
deleted_user
That's really good, TJ. Glad you got through the full cycle. You should feel full benefit in about 2 weekks from the first round you had last week. Good also that they didn't give you the benedryl. I think thay just give that to prevent anaphalaxis anyway.

I think you said you just started the CellCept like three weeks ago? The IVIG should get you through 4 to 6 weeks and, if the CellCept is going to work for you, you should see some slight benefit after about 3 months, so you may need to do some more IVIG to tide you over in the meantime. Unfortunately, this stuff works (or doesn't) on its own timetable and won't be rushed. I have a friend who is in AA and he always says you "need to give time time." It's just the way of it, unfortunately.

In any case, you can look forward to some good times in the near future. I went from not being able to walk to feeling 95% with just one dose of IVIG. I'd have been fit for a marathon with 5! :-)

Let us know how it goes.

Curt
deleted_user
deleted_user
Good luck with the IVIG. I can tell you it is the only thing that seems to be working for me. I have had about 8 treatments of IVIG now and have never been given tyelenol or benedryl. I do drink a lot of water the day before, and the day of at least 1 bottle of water and gatoraid. I also try to drink a cup of chicken broth before as I read all of these things will help. The IVIG should last anywhere between 4 to 5 hours. If given to fast, you will experience side effects. The mestinon can exaserpate your symptoms greatly. I started on Prednisone and mestinon when first diagnosed and had extreme issues with the mestinon. Improved greatly when they took me off. Just things to consider as medicines work differently for everyone. Good luck
cgreens
cgreens
I cannot get through my days without Mestinon at this time. Still little results from the IVIG at this point for me. Eyes open more, swallowing better, although my swallowing was not too bad before IVIG. Diapraghm a little better. Still waiting for good results from the treatment. My WBC count is down to the bottom of within normal now, likely due to the cellcept
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