Psalm 23 Posted May 20, 2015 Author Report Share Posted May 20, 2015 Thank you so much for your response rockenmamaof5. I'm so glad you have benefited at least to a degree from receiving IVIG. How were you able to get it approved ? I do know of a number of people who have received IVIG off label for various diagnoses other than the approved ones and have benefited greatly from it. One has lupus.Trying to get clear diagnoses can be such a long frustrating journey. I have been down and continue down that road as more abnormalities keep turning up.I'm sorry things are bad for you right now. I pray this 4th dose helps a lot !Thanks for the support. I really hope for an opportunity to try IVIG but we'll see.Hugs back, Janet Quote Link to comment Share on other sites More sharing options...
Chaos Posted May 20, 2015 Report Share Posted May 20, 2015 I just got approved for IVIG so will be starting it in the near future. Will keep you posted on how it goes. Actually I guess I will be doing the SCIG (sub-cutaneous IG) infusions that can be done at home independently. Like you Janet, I feel guilty taking it when others need it so much more but I failed the vaccine challenge and have low IgG subclasses so guess that qualifies me for it. My doc was saying they are finding it very helpful for many autoimmune things. Quote Link to comment Share on other sites More sharing options...
rockenmamaof5 Posted May 20, 2015 Report Share Posted May 20, 2015 Thank you so much for your response rockenmamaof5. I'm so glad you have benefited at least to a degree from receiving IVIG. How were you able to get it approved ? I do know of a number of people who have received IVIG off label for various diagnoses other than the approved ones and have benefited greatly from it. One has lupus.Trying to get clear diagnoses can be such a long frustrating journey. I have been down and continue down that road as more abnormalities keep turning up.I'm sorry things are bad for you right now. I pray this 4th dose helps a lot !Thanks for the support. I really hope for an opportunity to try IVIG but we'll see.Hugs back, JanetI have a presumptive diagnosis of Myasthenia Gravis at the moment that keeps it approved. Now the tricky thing is getting it done. My neurologist at a big hospital almost 2 hours away will do it, but the neurologist where I live will not do it. They want a clear cut diagnosis. Right now my PCP is trying to get ahold of my neurologists to try and get it set up here since he's willing to do it. Too many people worry about CYA and not about the patients. Unfortunately there isn't always a clear cut answer when too much mud is in the water so to speak. Like you it seems more abnormalties keep popping up. I am TIRED of hearing atypical this etc etc. We're hoping the muscle biopsy I'm getting done will hold some answers and I am also getting a Single nerve fiber emg to hopefully clinch the MG diagnosis or who knows what. How long do we have to suffer or how much do we have to suffer before they stop worrying about CYA. There are times when the befefits outweigh the risks. I don't think it should be up to the insurance companies to decide that and if you have a good doctor, they will be more worried about you than their own a$$Good luck! Quote Link to comment Share on other sites More sharing options...
Psalm 23 Posted May 22, 2015 Author Report Share Posted May 22, 2015 Hi Chaos,That's great! I'm so glad you will be able to give it a try. Hearing you mention SCIG makes me wonder if that was the subq treatment option that was mentioned to me in my appoinment. I would love to hear about your response from it. Please keep us posted. How convenient to be able to self administer it at home. I hope you realize vast improvement from it.You certainly are in need of and deserving of it so there should be no guilt on your side. I had actually wondered a while back if your CVID diagnosis qualified you for IVIG. How was it that SCIG was decided upon instead of IVIG ?Hi rockenmamaof5,Yes. That old CYA bit can be so frustrating and some docs really buy into it. I'm sorry about your presumptive MG diagnosis but glad it allows for IVIG approval. I hope you get something definitive from the muscle biopsy and single nerve fiber emg. Also I hope you get something local worked out for your IVIG. Good thing you have a PCP on your side. There are definitely a lot of conflicts out there regarding what is in the best interest of the patient. It's unfortunately slanted in the negative direction.Thanks for your responses and best of wishes to both of you, Janet Quote Link to comment Share on other sites More sharing options...
SarahA33 Posted May 22, 2015 Report Share Posted May 22, 2015 C - THATS TERRIFIC! Good news for you! I bet you were excited! Whats the top three symptoms at this point you are hoping to help the most with the ivig?? I'm rooting all the way across the country for you! Any idea when you can begin or what type of schedule youll keep?Jan -- try not to second guess yourself as to why you didn't ask Dr. G or the Hemo doc. about the Sub-q at the initial appts,.. think back to how unexpected that was at that time. You've know had time to do a ton of thinking and planning, maybe a f/up message to him or the hemo would be a good place to start to see if it's a game changer? What about RIch;s idea of hospital admission? I just don't know anything about the frequency of the treatments.. Quote Link to comment Share on other sites More sharing options...
Chaos Posted May 22, 2015 Report Share Posted May 22, 2015 Psalm- Not sure how it was decided on the SCIG rather than IVIG. Not sure if that is what my insurance will cover or what the doc specifically ordered. When I saw him last week he didn't say "why" it was that. He was just excited that it had been approved. If you end up doing the SCIG at some point, there is a co-pay card you can get that will cover deductibles and co-pays up to $4000. You have to get qualified for it before you start treatment though as they won't make it retroactive. Would be good to keep in mind for when you start your therapy, hopefully, in the not toooo distance future.Sarah- Honestly not sure what I hope will be the top symptoms it helps. My doc was saying that I may not notice much of a change while on it but he's hoping that in time, being on it will make it possible for me to get off some of the antivirals I'm on. I'm on high doses of a couple pretty potent antivirals which have helped me tremendously but every time I try to wean off, I flare up something horrid. Guess we will see. Quote Link to comment Share on other sites More sharing options...
Chaos Posted May 22, 2015 Report Share Posted May 22, 2015 Just got an email from my doc and he wants me to delay starting this until after my son's wedding at the end of June. He's afraid side effects may be problematic and interfere with wedding stuff, so guess it's on hold for now. Will keep you posted when I actually start it. Quote Link to comment Share on other sites More sharing options...
SarahA33 Posted May 22, 2015 Report Share Posted May 22, 2015 That's considerate of him..and only a few more weeks away! I'm sure you'll be keeping yourself quite busy until then and need all the help you can get after its over to recover! Congratulations to you and your family Quote Link to comment Share on other sites More sharing options...
Psalm 23 Posted May 23, 2015 Author Report Share Posted May 23, 2015 Sarah,I know I need to stop second guessing myself. It's certainly not very productive. At this point I am satisfied just to wait it out as I want a face to face conversation and not messaging. I have already had to do the messaging bit back and forth this week over other medication issues which I truly appreciate but it's not the same thing as having an actual appointment. Thanks for the suggestion though. I hope you're feeling better today.Chaos,Thanks for the SCIG information. That would be great if you could get off of the antivirals. Congratulations on your sons upcoming wedding. How exciting ! It does seem wise to hold off on starting the SCIG until after the wedding. You certainly wouldn't want to risk missing out on anything because of side effects. Waiting until July wouldn't make a difference I should think. Quote Link to comment Share on other sites More sharing options...
RichGotsPots Posted May 26, 2015 Report Share Posted May 26, 2015 Chios that's great news. Odd that they went straight to sub q IG first. Just don't be discouraged if it doesn't help with dysautonomia or autoimmune symptoms because it's been proven that a certain high level of IG is needed for that treatment. Quote Link to comment Share on other sites More sharing options...
Chaos Posted May 27, 2015 Report Share Posted May 27, 2015 Thanks Rich. My doc is doing his best to get a dose as close as possible to the higher level needed for autoimmune disease as he's well aware of that difference. Quote Link to comment Share on other sites More sharing options...
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