IVIG Infusions

Posted by giarc60 @giarc60, Oct 11, 2018

Anyone had success with IVIG infusions for idiopathic neuropathy ?

Liked by maryy, rwinney

@katec

If you only have one night your best bet is Stiles Switch! It is authentic, delicious Texas bbq and the line is not crazy and they usually don’t run out of the favorites! When we have out of towners we take them to Stiles Switch. There are other places as well like Franklins and LA BBQ but you have to get in line at 8:00am and hope to eat by 1:00 and they usually run out of brisket and ribs by then

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@katec thanks for the bbq info. I can’t wait

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@katec

@rwinney Yes, she submitted the prescription for IVIG a couple days ago so I’m sure it will go back and forth quite a few times with insurance, but I’m not giving up, we will get it approved!! It’s a longshot but we have to try something more aggressive like this since he’s only 15 years old. 🤞🏼🤞🏼

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@katec so it was oaklander that asked for ivig?

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Yes

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In reply to @katec "Yes" + (show)
@katec

@katec thats good. What other meds have they tried for your son?

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@albiet

@katec thats good. What other meds have they tried for your son?

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@albiet there have been many with no success. Most recently we have tried oxcarbazepine, Nortriptyline, Gabapentin, Lyrica…there are many more like creams, and even a DRG stimulator, all making no difference in his pain level.

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@katec

@arcticmark Thanks so much for your reply! I’m glad you have found some success with IVIG. I know that IVIG is generally only for those with an identifiable autoimmune disease, so since my son doesn’t have any indication of autoimmune I’ve been told IVIG is a longshot. But I want him to try it since it’s really the only treatment that has shown to reverse SFN in some cases. His doctor is prescribing a 3 month trial so now we are just waiting for insurance. I’m expecting an uphill battle with insurance, but our doctor is terrific and knows she will have to persuade them to let us try this treatment. I’m hoping that my son’s age (15 yrs old) will help with our case. Honestly, he’d be over the moon if he could get ANY kind of relief and live a more normal teenage life! Thanks again for responding!!

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Most insurance policies cover about 15 diseases for IVIG or "if it is medically necessary." They often deny based on you not having one of the 15 named diseases. If you have a good doctor they should be able to cite studies like Dr. Oaklander's and things about your symptoms that make them think that IVIG is medically needed for you. Good luck!

Liked by rwinney

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@katec

@rwinney Yes, she submitted the prescription for IVIG a couple days ago so I’m sure it will go back and forth quite a few times with insurance, but I’m not giving up, we will get it approved!! It’s a longshot but we have to try something more aggressive like this since he’s only 15 years old. 🤞🏼🤞🏼

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There are attorneys that are now specializing in taking on insurers on behalf of patients to get IVIG. Not sure where you are based but https://www.rosenfeld.com/attorney-profiles/Mala-M-Rafik.html are good attorneys in Boston who do this. I have never used them, but they have a good reputation, so this isn't an ad but you can probably call and ask if they know attys near you who do this.

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@arcticmark

There are attorneys that are now specializing in taking on insurers on behalf of patients to get IVIG. Not sure where you are based but https://www.rosenfeld.com/attorney-profiles/Mala-M-Rafik.html are good attorneys in Boston who do this. I have never used them, but they have a good reputation, so this isn't an ad but you can probably call and ask if they know attys near you who do this.

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@arcticmark I know it’s going to be a battle with insurance, but I’m ready! And thank you for the info on the lawyers, I had no idea there were folks who specialized in this so I will definitely keep their info! I really appreciate it!!

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@katec

@albiet there have been many with no success. Most recently we have tried oxcarbazepine, Nortriptyline, Gabapentin, Lyrica…there are many more like creams, and even a DRG stimulator, all making no difference in his pain level.

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@katec I am sorry to hear the meds didn’t work. How long did they keep him on the each medicine before they changed it ?

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@katec

@arcticmark I know it’s going to be a battle with insurance, but I’m ready! And thank you for the info on the lawyers, I had no idea there were folks who specialized in this so I will definitely keep their info! I really appreciate it!!

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@katec

I hope you and your family, especially your son, were able to enjoy the Christmas season.

Jim

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@jimhd

@katec

I hope you and your family, especially your son, were able to enjoy the Christmas season.

Jim

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We sure did, thank you so much for asking! We aren’t a ski and hiking kind of family anymore, so instead we bowled, went to iFly and tried axe throwing for the first time!

Did you have a nice holiday season?

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@katec

We sure did, thank you so much for asking! We aren’t a ski and hiking kind of family anymore, so instead we bowled, went to iFly and tried axe throwing for the first time!

Did you have a nice holiday season?

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@katec

Nowhere nearly as exciting as you. My wife and I enjoyed the slow, quiet time at home, a two week break from doctors'appointments.

Blessings to you all the new year.

Jim and Marilyn

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@lisalucier

Hi, @katec – I moved your post on IVIG success for idiopathic small fiber neuropathy here to this existing thread on IVIG infusions and neuropathy so you can connect with others discussing this treatment.

Hoping that members such as @arcticmark @albiet @artscaping @fomdelia @azza1 and others can comment on whether they have had these infusions and whether they have had successful outcomes with it.

Are you considering IVIG infusions, or has your doctor recommended this as an option, katec?

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@katec, @lisalucier Perhaps unfortunately, I have not tried IVIG treatments for idiopathic SFN. This is the time of year I check the research so that I am current. I am already committed to work on mobility and treating my own depression with a program of yoga, meditation, and mindfulness. My 3-month taper for an anti-depressant is over as of yesterday. Time to pay attention. Much good luck with your choices and we would appreciate you adding to the knowledge base for all of the Connect members who are taking on SFN. May you be content and at ease. Chris

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@albiet

@katec I am sorry to hear the meds didn’t work. How long did they keep him on the each medicine before they changed it ?

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Generally he was on each med for about 6 weeks unless he was having an adverse reaction.

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@artscaping

@katec, @lisalucier Perhaps unfortunately, I have not tried IVIG treatments for idiopathic SFN. This is the time of year I check the research so that I am current. I am already committed to work on mobility and treating my own depression with a program of yoga, meditation, and mindfulness. My 3-month taper for an anti-depressant is over as of yesterday. Time to pay attention. Much good luck with your choices and we would appreciate you adding to the knowledge base for all of the Connect members who are taking on SFN. May you be content and at ease. Chris

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@artscaping are you now off antidepressants? If s good for you. I can’t go off imipramine. I wish you all the best

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