RichGotsPots Posted April 25, 2013 Report Share Posted April 25, 2013 My neuro order IVIG last week and I'm waiting to hear back about approval. I'm pretty nervous about taking it Quote Link to comment Share on other sites More sharing options...
Katybug Posted April 25, 2013 Report Share Posted April 25, 2013 Hi Rich,I totally get your nervousness. You want something that will make you feel better but what about the side effects and black box warnings? I went through that last week starting my Xolair shots. It was the first time I was truly scared about a treatment we were trying. But I'm still here to tell the tail, and, you will be too! I so hope this helps you feel better! I'm keeping my fingers crossed for you. Quote Link to comment Share on other sites More sharing options...
arizona girl Posted April 25, 2013 Report Share Posted April 25, 2013 Rich, I know you sort have been hoping for this. What diagnostic codes is your doctor using to get you approved? Is he the one that is from the neuropathy association you went to? I was not approved for sfn as you know, it was when we found the cvid that I was finally approved. I hope your approval is quick and unchallenged.I have some good tips for you before you get your first infusion that will help keep side effects down. Let me know when you are ready and I'll help you out with that. I've been on it two years and have had no major issues after we switched ivig products after the first four months.Do you know which ivig product they are ordering for you? Some are better then others depending on your associated conditions.I won't be around for a few days, so I wish you well on this new journey Quote Link to comment Share on other sites More sharing options...
corina Posted April 25, 2013 Report Share Posted April 25, 2013 I so understand! When I started octreotide (which can have quite nasty side effects) I didn't even think it would help, was just afraid of what it might do to me (land me in hospital with an inflamed pancreas/liver). But it worked within 2 minutes and I just had some gallbladder problems which needed bloodwork and an echocardiogram and after 3 months everything was back to normal. Try to be prepared for what might happen, but I sincerely hope this will be your answer! Quote Link to comment Share on other sites More sharing options...
ramakentesh Posted April 25, 2013 Report Share Posted April 25, 2013 Well done Rich. Quote Link to comment Share on other sites More sharing options...
sue1234 Posted April 25, 2013 Report Share Posted April 25, 2013 Rich, that is great news! Can I ask what test did you have abnormal that your neuro decided on this therapy for? Quote Link to comment Share on other sites More sharing options...
HyperPOTS8 Posted April 25, 2013 Report Share Posted April 25, 2013 Good luck! Rich. IVIG has helped me greatly. Let me know if I can answer any questions. Quote Link to comment Share on other sites More sharing options...
E Soskis Posted April 25, 2013 Report Share Posted April 25, 2013 I took immune globulin IV every week for over a year. It kept my autoimmune dysautonomia at bay during that time. There's no guarantee how long it will last but, I figure any relief is better than no relief! Once it quit working, I began plasma exchanges and have been having them every 2-3 weeks for more than 2 years now - so far so good! I wish you all the best with the immune globulin - hopefully, you will have a lot of relief from the relentless symptoms of dysautonomia. Quote Link to comment Share on other sites More sharing options...
RichGotsPots Posted May 8, 2013 Author Report Share Posted May 8, 2013 Bad news, insurance denied it :/ my Dr. Is appealing it, will let update you as soon as I know. I'm always nervous about my breathing problems becoming worse from anything.. Quote Link to comment Share on other sites More sharing options...
corina Posted May 8, 2013 Report Share Posted May 8, 2013 That is bad news, I'm so sorry Rich. I'm keeping my fingers crossed that your doctor will be able to convince your ins. company to pay for it! Quote Link to comment Share on other sites More sharing options...
futurehope Posted May 8, 2013 Report Share Posted May 8, 2013 RichGotPots,I am so sorry for the difficulties with getting help for your breathing problems. Have you ever been evaluated for Mast Cell Activation Syndrome? Just curious. I remember reading an article my mast cell doctor wrote, quite lengthy, and in it he lists one manifestation of MCAS as shortness of breath. It has something to do with constriction of something inside the lungs, but not enough to show up on pulmonary testing.Do you have other systems affected in your health, such as the gastrointestinal system, the nervous system, the skin, etc......if mast cell activation is involved, there is a good chance that more than one body system is involved. That's why I am asking.Sorry if someone mentioned MCAS to you in the past. I have not read all of your posts. Quote Link to comment Share on other sites More sharing options...
Katybug Posted May 8, 2013 Report Share Posted May 8, 2013 Rich,That stinks. But, keep your fingers crossed...my doc had to go back at my insurance company 3 times to get the Xolair approved. It finally went through. Quote Link to comment Share on other sites More sharing options...
Guest Alex Posted May 8, 2013 Report Share Posted May 8, 2013 Rich that's a bummer, sorry Katie has a point though, don't give up. Keep pushing them and make sure your dr sends some solid documentation to your insurance so they don't have any reasons to turn it down again.Stay positive. I'll keep my fingers crossed for you.Alex Quote Link to comment Share on other sites More sharing options...
Natops Posted May 9, 2013 Report Share Posted May 9, 2013 I cannot get over the high price tag on ivig. My first month’s treatment was 35k. The second month’s treatment was 33k. The insurance company at first didn’t pay for it. I called them and told them I didn’t realize it was so expensive. They agreed to pay for it but could not guarantee that the remaining 4 months will be paid for. Needless to say I stopped the treatment. I’m not going to be on the hook for 100k+. I’m not bed ridden or incapacitated. For that kind of money I would expect to be superman and fly. Quote Link to comment Share on other sites More sharing options...
RichGotsPots Posted May 23, 2013 Author Report Share Posted May 23, 2013 Well my dr's appeal was denied. He said the dr for the ins company was a jerk. But now I got a Sjogren's diagnosis, maybe gonna try to get it through my Rheumy.. Quote Link to comment Share on other sites More sharing options...
corina Posted May 23, 2013 Report Share Posted May 23, 2013 You keep working on it Rich! Quote Link to comment Share on other sites More sharing options...
RichGotsPots Posted May 31, 2013 Author Report Share Posted May 31, 2013 Thnx Corina! Quote Link to comment Share on other sites More sharing options...
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