Robocar is exactly right. Those are the exact words my Dr. put to me. However if I were younger I would think long and hard about it.
Mike

I have to differ with Robocar in that I have never been treated with immunosuppressants. There are also many people in the Facebook MG groups on IVIG and Mestinon alone. My neuro and my hem/onc doc who does the IVIG at a Cancer Center are both adamant that IVIG is far safer than immunosuppressants and are avoiding them. I have been on IVIG for 2 1/2 years. My neuro said the reason why most MG patients don't go on IVIG first is because of the prohibitive cost and the difficulty in getting insurance approval long term.

With all that said, I hope to avoid immunosuppressants forever because the side effects are irreversible and can be life threatening. As hard as it is to have to spend 2 days every other week at a Cancer Center for the rest of my life, I choose that.

As for your question, I am in the exact same boat as you with the scheduling. I have been on every two weeks for 2 1/2 years. I did improve and went down to every 3 weeks and did just fine on that for a while, but I went into crisis a month ago. There were a few factors; I skipped a week of IVIG, had a tragic death in the family, and overdid it a bit at Christmas. Since the crisis, I've been back to every two weeks. It will be a little bit before I try and space it out to every three again, but I'll do it.

A couple questions and hints; when I went down to every three weeks, my hem/onc doc increased the dosage a bit to help carry me through. And above all else, I HIGHLY RECOMMEND getting a port! I went through a year of those painful sticks, blown veins, and all the bruises that would sometimes still be there two weeks later when I went back...getting a port was the best thing I ever did! No more lines or IVs hanging out of your hands or arms, it saves your veins, little to no pain with your infusions, it's dreamy!

Thanks yall so much... so do yall get sore veins with the IVIG??

The sticks of the IV's don't bother me so much, and as of now I still have decent veins (I never let them use my AC veins, as I want to save those for emergencies - yes I'm paranoid. but I don't want to get in an emergency and not have any access).. I worry though.... If my peripheral veins feel so irritated and mad, if I got a port, would that just mean the deeper "more important" larger veins were mad!? I can deal with discomfort.. it's not fun, but it's the least of my worries.. I just don't know if the reaction I have is adverse, or normal? or if getting a port would eliminate the vein irritation part?

robocar- I think my Dr was trying to avoid the immunosuppressants, as I work around sick people, and I have two small kids who are always sick... they have their own risks too.. I think they have the mentality that IVIG is the lowest risk of all these things.. they tend to add on cellcept or imuran if IVIG alone isn't working.. they seem to not be as big of fans of steriods..

Mike- when you say if you were younger you'd think harder about it - what do you mean? You would WANT the immunosuppresants, or be more afraid of them? I did steriods once (i started out on 60mg though).. and was so weak and felt like I was gonna drop dead.. I realized from here that I should have been started low and worked up though.. it was awful!

Tracy - are you on anything else besides IVIG? I'll put more thought into that whole port idea too- thanks! I think I need to do it every 2 weeks, but with full time job, kids etc.. it's hard to find the time.. though when I can't breathe or swallow or walk well I feel completely stupid! The best I ever did was the 2nd round of IVIG (did 3 days of loading dose in the hospital, and then 3 weeks later had another round and BAM I felt CURED!!! ) I often wonder if I should have another 3 day loading dose to boost me up?? You ever do this? I feel like I build a tolerance or something!?!

If I were younger (I'm 72) I would think harder about cellcept, imuran or prednisone. I have been at this for 2 1/2 years and had 4 skin cancers removed in the last 12 months. Now I'm not saying it was the drugs but could well be. I now have a couple more places that need checked next appt. Imuran made me so sick, I lost 35 pounds. High doses of Prednisone got my legs so weak I could only lift my feet 2 inches. IVIG hasn't done much for me nor has Mestinon. I am on 17 1/2 mg of Prednisone, 2500MG Cellcept and Mestinon 60mg 4x a day. I'm doing ok but what works for me may not work for anyone else. I have 4 positive antibodies.
Mike

Thanks mike... ugh, I completely forgot about the skin cancer risk.... I live in the south and have been in the sun most of my young life (hardly any sun from 25-now.32) just been too busy or ill.. However I will be outside a lot this summer (heat makes my symptoms worse, so I'm a bit nervous).. but that is a very good point...as have worried that I have a basal cell already.. I feel like It is a constant battle in my mind... do I accept that THIS is as good as it can get.. I am thankful for where I am.. but then what if there is something that could make me even better.. make me not feel completely awful.. but if it makes me more sick then i'd regret it!

They are thinking I may have crohns too - so weight loss is a major issue with me.. when my stomach flares I drop weight like crazy.. plus I used to be in good shape - had good muscle.. and the last 2 years I've been sick with all my GI symptoms plus muscle weakness... I struggle to keep my weight up..

One of my worst MG episodes was caused by the sun, so be careful.
Mike