I'll try not to ramble too much as it's been forever since I've been on here.

I've had MG since 1995 but had my first IVIG infusion in 2005 and since then have continued that as part of my MG treatment plan ever since. It's been a while since I received multiple treatments over several days because for some reason now my MG responds very well to a single treatment once every six weeks and that's they way I've been doing it for years. Why it works like this for me I have no clue except that as with MG, every person is different and treatment plans can vary from patient to patient. My doctor and I both feel if it works then why mess with it? It's not like I am new to this disease.

Well, I get a letter in the mail from my Insurance company who now states that I can no longer do it this way because according to research, IVIG cannot be administerd in this way due to case studies. It is to only be used over 3-5 days in periods of exacerbations therefore they will no longer cover my single infusion every 6 weeks. They say I am now "stable" and there is no use for them any longer. Newsflash... the reason why I am feeling better is because I am able to receive one infusion once every six weeks. Again, why this works for me I have no clue. I had actually planned on stretching out my infusions to 2 months and then hopefully 3 and then 6.

My doctor is going to respond to the insurance company but won't be able to do so until he gets back from vacation on August 19th. I'm actually on an extended COBRA coverage insurance plan because my husband who lost his job TWO years ago still hasn't found one

Anyway, I was wondering if anyone here has their IVIG infusions given to them in an unorthodox way such as I and if so have you had your insurance company give you a hard time about it? I'm at a loss as to why after doing this for YEARS they are now coming up with this crappola about it no longer being covered.

I'm finally seeing the light at the end of my dark MG tunnel which occurred back in 2005 that landed me in the hospital 3 times in 6 months and I shudder to think about going back there if my unorthodox IVIG infusion isn't covered anymore. Already on SSDI for MG and would hate for something to change in regards to that because of an "Insurance" decision to stop my IVIG coverage.

I'm done... sorry that it was longer than I wanted it to be

Any input is greatly appreciated.

I have been using IVIG in such a manner since 2000. It is actually the typical manner in which IVIG is used in MG.

Every once in a while, the insurance company will try tactics like yours is doing now. My neuro simply appeals the decision with a letter and then the flow of IVIG continues.

It's too bad your doc is on such a long vacay. Hopefully he will take care of it quickly, and request an expedited ruling. I wish your dh good luck in the job hunt as well!

Keep us posted!

Thanks so much 4-eyes!

How often do you receive your single infusion?

I was looking at that letter like it was written in a foreign language because I couldn't believe what it was saying!

I mean really, how in the world does an insurance company go FIVE years approving a single infusion once every 4-6 weeks and then all of a sudden they say that my doctor and I aren't using IVIG according to the "guidlines" as stated in their policy for MG? It's what works for me.so why in the world question it?

Do they not know that using it in this manner has kept me reasonably stable? So much so that I am trying to extend it to once every 8 weeks. Well, I had to call for one in seven weeks because I was feeling some breakthrough symptoms but I'm honestly trying my best to eventually get totally off of it one day.

I have no idea what my Neurologist must have said in his report when he sent the paperwork to the Insurance company indicating that we were going to try to extend it to one infusion every 8 weeks. That was probably all he said and then the person "reviewing" the paperwork must have went running to the board screaming that I am in remission or something. Better yet, I no longer need IVIG anymore at all which is NOT true! I still have MG and still putter out when it's time for my next infusion.

I've been through so much in the last two years and the reason why I didn't go into MG crisis mode was because of my single IVIG every 5-6 weeks along with my other medication.

Geesh!

I am every 4 wks. Yes, making any change at all can cause them to review/deny services.

Your neuro is probably familiar with the hijinks, and will quickly be able to get things in order again. If not, there are other ways to make it happen: 1. Write your state board of insurance. 2. Contact an attorney and have him contact your insurance company. FWIW, I have done both of those things.

Try not to stress over this. Your doctor is willing to help, so that is terrific!

Thanks so much.
I am trying to decide what to do right now though. My Neuro office told me to call the Insurance company and at least get the ball rolling but the only contact I can make with them is to formerly fax an appeal to them. I'm not exactly sure what to say to them because everyone knows that they have ways of twisting things around and I don't want that to happen.

I know that my Neuro will jump right on it when he returns on August 19th because this is very important. He treats me as a priority. But if I wait that long to contact the Ins. Company myself then they may think that I agree with that decison since I waited so long to appeal. They do have an emergency appeal set up for cases that need to be heard faster though.

Next infusion is due on September 9th. I think I'll get something together over the weekend and fax it on Monday. I am DEFINITELY APPEALING THIS DECISION!

Remaining calm but this has put a wrench on things for me and I need to make some decisions.

Shari,

If you would like to work up an appeal on your own and PM it to me, I am happy to review and make recommendations. I am also a healthcare professional so know some key points/terminology to include. I definitely think you should do something before the 19th.

Hang tight!

Yes, I believe I should too. I will pray over what to say, write up my appeal this weekend and send it to you in PM sometime Monday.

Thanks for all you help already. I still cannot believe they are trying to pull this on me. I've been so blessed throughout all of this as far as insurance coverage for my IVIG infusions for actually EIGHT years and now this? Take away my maintanence infusions and send me in a downward spiral which will cause multiple infusions over 3-5 days again??? And that is the only way they will approve infusions?? Really?????

I've got to calm down

You can do this! Your last post makes me confident of it. I am on vacay right now, but will return home tomorrow, so Monday will be perfect as I can work from my puter instead of my phone!