[Icrad1]

Okay I am now on Imuran (switched from CellCept) and will be starting IvIg at home very soon (STAT order, saw doctor on Monday...they set everything up yesterday - today being a holiday, may not hear from the nurses until Thursday) on Mestinon 90 mg every 4 hours that I am awake...What can I expect from IvIg...I have read about it, and am hopeful that I will feel good afterwards (even if I have the strength to pick up something around my house, it will be good...I get tired just changing a garbage bag!!!)

So if anyone has some words of wisdom or support, plese send it my way!!!!

Darci from Chicago

[pingpongman]

I switched from Imuran to Cellcept. I was on Imuran for 12 months. I lost 35 pounds so the side effects were killing me.
As for IVIG I have wasted a fortune on treatments. They appear to do nothing for me but Dr says you don't know what you would be without them. I am postive for 4 different antibodies so my body is flooded with bad antibodies. I think PLEX is next for me.
Imuran works very well for most people and I wish you the best. It was working for me but the side effects were too bad.
Mike

[limpy]

I have no words of wisdom, but I am starting IVIG on Monday for 5 days. I will also be starting 60 mg prednisone per day on the same day. Everyone says to drink lots on the day before and day of to try to avoid headache, and that you may have flu like symptoms after. But a lot of people say that you will feel so much better after the side effects of the treatment go away. I am looking forward to feeling kind of normal for a while. I am on mestinon 60 mg 3xday.
Best wishes to success in your treatment. Keep us posted.
Linda

Originally Posted by Icrad1

Okay I am now on Imuran (switched from CellCept) and will be starting IvIg at home very soon (STAT order, saw doctor on Monday...they set everything up yesterday - today being a holiday, may not hear from the nurses until Thursday) on Mestinon 90 mg every 4 hours that I am awake...What can I expect from IvIg...I have read about it, and am hopeful that I will feel good afterwards (even if I have the strength to pick up something around my house, it will be good...I get tired just changing a garbage bag!!!)

So if anyone has some words of wisdom or support, plese send it my way!!!!

Darci from Chicago

[4-eyes]

I've done IVIG every 3 weeks for 12 years. Lots of water for several days is key, and I also take ibuprofen. Also, make sure the nurses don't try to jack up the flow of the IV. IMO, you shouldn't go over 100 ml/hour the first round. Benadryl is also often recommended and I would definitely use it the first time.

If either of you do get the dreaded headache...don't wait around to see how bad it can get, because it can be EXCRUTIATING! Call the nurse/doc immediately and get something for nausea (as that comes with the headache!) and maybe even a prescription pain med. If the headache happens, take meds, drink MORE, and lie down in a dark room if possible.

I'm not meaning to alarm you, but I wish I'd been more prepared when I began 12 years ago. Also, even with taking all the precautions, sometimes you just don't feel good afterward. However, it REALLY can make a big difference as far as symptoms/quality of life goes.

GOOD LUCK!

[pingpongman]

Limpy beware of Prednisone!!! You will get a bloated face (Cushings) a hump on the back of your neck (camels hump) swelling in ankles and feet and lots of weight gain. You have to be withdrawn VERY SLOWLY so these problems stay quite a while. What it did to me worse of all was it was destroying the muscles in my legs. I reached a point that I could only lift my left foot 3 inches.
Mike

[erinhermes]

Hello! just saw your post and thought I'd let you know how Ivig can make you feel......like superman!!!!
I absolutely love, love, love ivig! My first dose was in ICU.....right after being dx'ed. I was terrified.....had to have a PICC line, but it was totallyworth it!
Was able to get stuff done for the first time in years!!!!
You do need to make sure to premedicate first....benadryl and Tylenol. Rest. Get lots of water. Let them know if you feel bad/weird.
Ivig can be the best.....ever!
Love,
Erin

[limpy]

Pingpongman, I am scared to death of the prednisone. My husband had to take steroids to stay alive as he had no adrenal glands. He had all the symptoms you describe and diabetes to boot. I do not want all of those symptoms, but I think I will try it for a short time just to see if it will help.

Originally Posted by pingpongman

Limpy beware of Prednisone!!! You will get a bloated face (Cushings) a hump on the back of your neck (camels hump) swelling in ankles and feet and lots of weight gain. You have to be withdrawn VERY SLOWLY so these problems stay quite a while. What it did to me worse of all was it was destroying the muscles in my legs. I reached a point that I could only lift my left foot 3 inches.
Mike

[4-eyes]

Limpy,

Pred was/is the best thing I've tried, other than the reboot. While 60 is a high dose, my doctor switched me to every other day just as soon as I was stable and that instantly decreased side effects by half, and soon we began dropping the dose. I have actually gone completely off pred a couple of times, but now never go above 20 a day because of psychiatric symptoms (depression/rage) at higher doses. At present, I'm down to 2.5 mg eod, and want to drop that at summer's end (fingers crossed.)

Another option, which I've also done, is IV solumedrol. It could be done with the IVIG (probably immediately before). That works fast, avoids the gastric complications, and overall has less side effects. I did 125 mg IV solumedrol every 3 weeks for a while instead of pred tabs. It's something to consider.

I'm glad you aren't letting fear stop you from trying a possible good treatment. You may be limpy, but you certainly aren't WIMPY!

[imaginegoodthings]

Originally Posted by 4-eyes

I've done IVIG every 3 weeks for 12 years. Lots of water for several days is key, and I also take ibuprofen. Also, make sure the nurses don't try to jack up the flow of the IV. IMO, you shouldn't go over 100 ml/hour the first round. Benadryl is also often recommended and I would definitely use it the first time.

If either of you do get the dreaded headache...don't wait around to see how bad it can get, because it can be EXCRUTIATING! Call the nurse/doc immediately and get something for nausea (as that comes with the headache!) and maybe even a prescription pain med. If the headache happens, take meds, drink MORE, and lie down in a dark room if possible.

I'm not meaning to alarm you, but I wish I'd been more prepared when I began 12 years ago. Also, even with taking all the precautions, sometimes you just don't feel good afterward. However, it REALLY can make a big difference as far as symptoms/quality of life goes.

GOOD LUCK!

I posted a few days ago about wanting to begin IVIG therapy my neuro specialist wanted me to have. An hour after that post, I received a phone call saying that my insurance appeal worked and my IVIG treatment is now authorized to begin next week.

So is it best to drink water and take Ibuprofen and Benadryl before the IVIG (like, that morning)? what does the Benadryl help prevent?
Thanks for any advice you can offer--

[4-eyes]

Begin hydrating the day before and continue for a few days. Do the pain meds and benadryl 30 min prior to infusing and for 24 hours or so. They will help prevent any side effects/reactions.

If you feel "funny" during the infusion, tell the nurse. She may need to lower the infusion rate. Too fast of an infusion is a major cause of bad reactions!

Good luck!