Hi, Canuckgal.

Regarding the IVIG infusions, my knees and back would tighten up for a day or two after but not swell and I'd have a headache the next day and that would be it. I'd take a headache and some tight joints for a day or two over feeling the effects of this disease everyday ;-) The improvements were incredible compared to the minimal improvements from prednisone, methotrexate and immuran - best of luck to you...

I have had the treatments since January and the side effects are not too bad at all if they administer solumedrol just before the treatment. The side effects for me include fatigue and a headache. They last about 5 days with the steroid, about 2 weeks without. The IVIG seems to be really helping fight the DM. Much better than prednisone and methotrexate. I wish you good luck!

Girl..I can't WAIT to start IVIG lol..how pathetic is that. I start Oct 12-13, 2 days a month every month like yourself. I will deal with headaches or whatever comes with it at this point..as I HAVE to start getting better..I feel they can do no worse!
Let's stay positive that these IVIGs will help both of us..I'm still on the 60mg of Pred a day and Methotrexate weekly..and still can't move much at all, so I figure they can ONLY Help right?
We will do good, it will help us..

I have a couple of days that make me want to just lie around, but then things get much better. For me it's important to do the infusion slow enough, otherwise my blood pressure gets too high. Also, I'm not sure that the benefit extends a whole month. This coming Tuesday and Wednesday I get it again, and I'm ready for it.

It could be that after your second or third set of infusions you'll notice the difference more. Sure hope it will be beneficial for you. Best of luck!

I think the IVIGs are what got me on the way to recovery from PM. I was also on MTX and prednisone. I received 6 infusions (75g); two days in a row at first, then one per month. I didn't notice any side effect.
Many people have headaches, so to prevent this, take a couple of tylenols500mg before and don't forget to drink a lot of water before and during the perfusion. The rate of perfusion is also a factor; if you can stand it, have it over (between 10-15 g per hour).

I got two days of transfusions 70g each day, and it took six hours each day. I did read here that it was a good idea to keep hydrated, which was really good advice, for some reason my mouth was really dry for those days and a couple of days after too. I feel like I have a bit more energy, and the rough spots are fewer in the last few days. I get to go have my eyes checked tomorrow, the prednisone is giving me double vision and little black floaters! So the headaches that I get are horrible. I get to start tapering the prednisone on Oct 14th, hoping that will help!

Did you have the headaches before the IVIGs? If it was after, it is common side effect and in some patients can last up to a week. If that's your case, start taking Tylenol a couple of hours before the infusion and again just before the infusion. Did your blood pressure go up during the session?

I have had headaches all the way along, I think it's my eyesight change from the prednisine, double vision and black floaters. Getting checked out by an opthamologist tomorrow. My blood pressure stayed even thru both transfusions. I do pop a couple of Tylenol every four hours, on a daily basis. Thanks Levek for all you advice,