[Needananswer]

I asked all my dr to list the safety of all MG treatments and they all had vastly diff answers. Some though imuran was safer than Methotrextae and vise versa. They all thought long term pred was a bad idea -- wish I had know that a year ago.

IVIG was the only one that all dr unanimously agreed on. But when I look at the data ab serious adverse events it seems rather significant.

I'm ok w flu etc but not at all ok w kidney failure, stroke, shock etc. The allergy Immunology excerpt below says that 44% had SERIOUS adverse reaction.

I'm all set for my infusion but I'm seriously concerned ab these numbers. I already know my MG devil. I don't want another problem on top of what's already going on.

Anyone have an opinion? I'm super scared



The administration of IVIG is a complex undertaking . In many cases patients with PI are
chronically ill further complicating therapy. Furthermore, a majority of patients will experience some adverse event (AE) in the course of their therapy. There are also numerous severe IVIG-associated AEs many of which are acute and include thromboembolism, hypotension, seizures, aseptic meningitis syndrome, anaphylaxis, acute respiratory distress syndrome (ARDS), pulmonary edema, apnea and transfusion associated lung injury (TRALI). All IGIV products also include a black box warning regarding acute renal failure. The Immune Deficiency Foundation (IDF), which is the major patent
regarding AEs in their 2002 survey of 1170 patients with PI . They found that 61% of patients have infusion rate related AEs and 44% have had serious AEs. For these reasons it is critical to select patients who are appropriate for specific sites of care. In general a patients history of AEs is directly proportional to the medical supervision required. Thus the choice of site of care must account for the patients medical and IVIG history. For these reasons the AAAAI has generated a guideline to facilitate matching particular patients to specific sites of care (provided as Appendix 5).
oriented advocacy non-profit organization for those affected by PI has ascertained real world data 7

[Juanitad]

I have been using IVIG for about 9 years and while I haven't had any significant issues, there are precautions you can take to alleviate some of the side affects. First of all, have the nurses start you at a slow rate (which they probably would anyway) and ramp it up very slowly. I discovered that when I got to 225, I started getting headaches and flu like symptoms. I had it lowered to 175 and all the side affects went away - I have gradually increased to 200 with no return side affects, but I think I'll stay here. Having said that, 50 may be where you start and 100 as high as you want to go. it's unique for each individual.

Also, most people pre-treat with Tylenol and/or benedryl to prevent any side affects before you start and drink lots of fluid to hydrate before you start the IVIG.

There are some people on this site who have had problems with IVIG, but far more with few or no side affects.

For me, the benefits are great and have been since my first treatment in 2005. I don't know where I would be without it and I will always encourage a person with MG to at least try a round of IVIG to see how they react.

Good luck on whichever decision you make!

Juanita

[bny806]

I have had Aseptic meningitis 3 times (1 time the worst- with a 103 temp etc).. but we have realized that it was rate related... they ramped me up to 210 and I did 3 days i a row like that..... they were all rate related.. now that we know how I react better, we never go over 100 and I do fine most of the time.. I drink a lot of water, take benadryl and tylenol beforehand.. The meningitis was uncomfortable- yes, but no long term effects and IVIG saved me... I coudln't live without it! I can enjoy life again, and raise my kiddos!

[schavarria]

I've been on IVIG for 6 months now. The loading dose back in October 2013 gave me flu-like symptoms and severe headache. I haven't had that happen since. I take benadryl and tylenol prior to infusion, and they start me out slow and work up the rate. Last month I got a small blood clot in my arm next to the infusion site. It was gone within 3 weeks, no big deal. The scariest thing about that was that I thought they might take away the IVIG.

IVIG gave me my life back. I have energy, have reduced prednisone from 30 to 10 mg per day, and feel amazing.

Best wishes to you, and hope you can get to feeling better!

[drpdhmr]

I've been doing IVIg every 2 weeks since October with virtually no side effects except a little joint soreness that is usually gone the day after the infusion.

It seems like the most common side effect I read about here is headaches, but I haven't experienced much of this as long as I'm properly hydrated before the infusion. I usually bring along a liter of water and drink it over the 3 hours it usually takes for the treatment.

The rate of the infusion is something you'll want to note, but they always start slow and then ramp up from there to whatever the pharmacist and / or doctor order.

Personally, I have done 300+ with no problems and all this really does for me is get me out of there faster.

[Needananswer]

Thank you so much - your responses have helped me so much! It's crazy how I justify living w such a low QOL. You gave me a vote of confidence. I start Friday. Ill keep u posted.

[Needananswer]

PS Bny806 I'm sorry you had 3 aseptic meningitis - ugh
Does AM always require pred? That is my biggest fear. My face is JUST starting to look like mine.

[bny806]

nope! it's really just symptomatic treatment - so when I was inpatient I did Toradol IV (it was GREAT at relieving the pain), and tylenol for the fever.... and lots of fluids by mouth (and if inpatient - by IV too).. I have never done steriods for it, not even when my temp was 103 something (they did an LP on me a few days into the IVIG loading dose) and my CSF showed significant meningitis... otherwise, I didn't want to tell them about it, as I was more concerned to find out if IVIG was going to help my issues, but the csf told them for me I just took ibuprofen when I had it the other two times... not fun.. but managable.. and worth it! Again, it was just learning my rate threshold...


Good luck!!! How exciting that you may be feeling SOOO much better so soon!!! I think I smiled for 2 weeks straight when IVIG kicked it.. I had been physically unable to smile for months... to be able to breathe again, smile again, hold a crayon with my kids, hold a fork, swallow.... It gave me hope after months of scary times... It's a miracle drug!

[Needananswer]

Thank you bny! Your response has quelled so man of my fears and is super duper encouraging!! There was a miscommunication w dr/ins so now I'm slated for Monday am. I can't wait!!!!!

So glad ur feeling well.