who out there has had ivig therapy and please tell me your experience with it! Thanks, went to dr today, weakness continues to be an issue as does pain and now liver enzymes are starting up. Dr has decided to stop methotrexate, as she feels it’s not performing as hoped. She’s keeping me on imuran tho because she says it will support the IVIG in trying to get me into remission. Thanks all for input
Hi, I was diagnosed with IBM last fall. I have been on ivig therapy for 4 months along with prednisone, methotrexate, creatine monohydrate, folic acid along with some vitamins. Also exercise 20-30 min per day. During that period my strength has increased and I am being taken off the prednisone and hopefully the methotrexate within the next couple of months. The goal being to try to maintain my existing strength for as long as possible.
I believe the IVIG is helping although the day off I become extremely tired. However the next day I feel good and the next few days I can tell it makes a difference. During the actual IVIG I get extreme indigestion half way through the third bottle of four. On occasion I also get itchy but they give me Benadryl and it goes away.
Hope this helps.
Hi Wendy,
I am currently in remission - 2nd time with a DM diagnosis. IVIG has been my saving grace the two times I have dealt with this disease - using IVIG I needed no other medication - and both times I was on infusions for two years then was able to get in remission - I love IVIG - it has virtually no side effects - except headaches - and if they infuse at a slow rate - that side effect will not be an issue.
I was very ill before IVIG was begun, and felt incredibly better very quickly - for me it was a miracle!! I hope you will have the same experience as I have had.
Hang in there - I think you’re on your way to feeling much better!!!
I've had IBM for about 15 years. I was finally diagnosed in 2006 and had a Dr. who was super conservative. After many years of the most minimum of treatment, in 2011 I finally got IVIG. I had 4 months of the treatment with no improvement and some side effects which were not good. I don't know if it didn't work for me because I had to wait so many years without any aggressive treatment or if it just didn't work for me.
I was very disappointed since I had heard good things about the IVIG and my guess is that if I had received the IVIG treatment years earlier it might have helped. My decline was quite slow until just a few years ago when the decline increased. I managed to get into the current trial but am quite certain I am getting the placebo or at most the lowest dose so all my hopes are on the end of the trial and hopefully going onto the full drug in the open label phase. Good luck with the IVIG.
I don't know anything about IVIG but I sure would like to know how you are doing on it there is always hope out there and we will need to be brave and see what is out there for us, good luck keep in touch gentle hugs !
I was diagnosed 6 years ago with IBM. I've had several rounds of therapy, none of which helped. I exercise at least an hour each day, kayaking, biking, swimming or walking. My legs and hands gradually are getting weaker. Can you comment on ivig therapy as, doctors at Johns Hopkins tell me there is no positive treatment for
IBM?
I have been living with PM since April 2011, starting in Jan 2012 I started on oral steroids and my doctor wanted me on IVIG but did not start until June 2013. I do weekly at home with a nurse verses getting it in several days every couple of weeks. Hopefully you can get it at home. I get a IV does of steroids plus I take benadryl 50 mg and drink lots of water. My treatment takes about 3 hours and If it goes too fast could get some side effects. We started off really slow and found 3 hours I am good. There are many different brands and I have heard some are different then others. The first one I was on after a month I got a rash and had to go off treatment for 5 weeks then started on another and have had no problems. Sometimes I get hot flashes or feel worn down after...I just know when Monday afternoon comes that is my down time until the next day. I make sure I rest and again drink water water water ...PS google and you will find information...I have always felt that you have to educate yourself then ask questions and do not let the nurses bully you :) make sure your orders state start off with a slow drip. IT has helped
Thanks for the info everyone, I really appreciate it.
This is the first time I have participated in a chat of this kind and I am amazed and grateful at how much I have learned.
I've had IBM since 1999 but wasn't diagnosed until 2006. My doctor had never seen a case and was very much against any kind of aggressive treatment so the only treatment he prescribed was CoQ 10 (for several years) then Zocor (for a few more years. Finally he agreed to prescribe the lowest dose possible of Methotrexate for a year or so.
I changed doctors in about 2012 and was given IVIG for 4 months with no positive results.
All in all I have not had any improvement in all these years and I realize now that there are other people who have had much more aggressive treatment plans with various degrees of success and remission. Something I wish I had know about years ago.
The one significant hope that I have is for the new drug in trial now. It is one year into the trial, which is being conducted world-wide. The trial will conclude in December. The FDA has put this new drug on a fast-track status and it has produced quite a bit of optimism for being approved and effective. Information about this trial, NCT01925209, is available at:
While I am fairly certain I am getting the placebo, I am convinced that this drug, BYM338/bimagrumab from Novartis, could be a significant breakthrough in treating IBM.
I would be very interested in hearing from anyone who is participating in this trial or has additional info on it.
Thanks for sharing your experiences on managing this very difficult disease.
Marge, if you are in the placebo group, I hope the drug demonstrates enough effectiveness that all participants in the trial are switched over at some point. Please keep us posted as you learn more about the trial, and best wishes to you!
Marge I am with you just keep up the great spirit and go forward, Dancer said it best I hope Doctors lean from it and can go forward in our treatments I will be thinking of you good luck !
I’m pretty sure I’ve told you my IViG story before so bare with me if I’m being repetitive! I had a few treatments, I can’t recall if they helped, but the last one was administered too quickly and I ended up in the ER then admitted with meningitis. Terrible experience but not the norm. Many people have great luck with ivig.
So far my luck has been with Rituxan. My CPK has been normal for a while now.
Wishing you much luck!!
Nichole
Wow on a normal cpk…wish mine was, and maybe it will if they approve anything new. I’m just not sure if I can afford it, but I guess we’ll see…thanks sweetie
Yeah, I never thought I’d see normal. I guess after all the trial and error I can’t complain about being on three AI suppressents as long as they’re doing the job. I’ve had to fight with my insurance in the past and jump through major hoops but luckily it’s all worked out in the long run. Myositis is not cheap. Sorry if we’ve talked about it before, do you not have insurance? Don’t answer if it’s too personal