Medicare and IVIG?

[p8d]

Has anyone on Medicare gotten IVIG covered?

[Clb75]

Yes I'm on Medicare and blue cross blue shield secondary. It covers 80%, then bcbs picks up the rest. I get it at an outpatient infusion center affiliated with a hospital, plus it's an FDA approved treatment for CIDP. I know there are rules about coverage...they cover outpatient but not home infusions, and the ivig has to be an FDA approved treatment for the diagnosis you have. It can be tricky to figure out, you can try calling an infusion center and speak with the billing department to see how they handle things.

[p8d]

Thanks, clb.  I will do as you suggest.

[Psalm 23]

Hello,

I am currently receiving IVIG and am on Medicare but because I am receiving it for a Non - FDA approved diagnosis ( AAN ) Medicare will not cover it however my Aetna part D drug plan will. Go figure. It did of course have to go through an authorization process and it has to be done as a home infusion. The way it worked for me was my Neurologist sent IVIG orders to NuFactor ( specialty pharmacy ) who then submitted paperwork to Aetna who then approved it. NuFactor then contacted a local infusion company they had a contract with who then set up an infusion schedule with me. NuFactor ships all of the supplies and the Privigen to my home once a month which covers me for two infusions. I receive the IVIG every other week.

There are only a small number of FDA approved diagnoses for which IVIG is supposed to be given so having it covered through Medicare unless you have one of the few diagnoses is virtually impossible. I really don't understand why the Medicare part D drug plan would cover it if Medicare itself won't but I don't question it I'm just very thankful it does.

Best of wishes to you in your pursuit !

[p8d]

Thanks Psalm23. Does it help?  If so, what symptoms?  I really, really struggle with fatigue, overstimulation and of course hr/bp.  I will have the Celltrend test soon, nothing showed up on the Mayo panel but my cardiologist and neurologist are both pretty positive it's autoimmune given positive ANA.  Thanks.

[Psalm 23]

Yes. It does help. Primarily with the ability to remain standing for much longer periods of time without developing jello legs, shaking, nausea, blurred vision, tachycardia, air sucked out of your lungs feeling and ultimately dizziness. Because I have an intact adrenergic function my b/p doesn't drop with a 10 minute ttt. Rather I have a hyperadrenergic response to standing so in my case we are hoping for a correction to my extremely high standing b/p and rest of the time very labile b/p which can range from 80s/40s to 200/116. I am sorry to say that thus far the IVIG has not helped my fatigue which has always been one of my worst issues. I will say my tolerance for external stimulation has improved over time. In addition to IVIG I am on Azathioprine ( Imuran ) in hopes of achieving greater symptom improvement. It's still too early to tell where this is all going to end up.

I've heard others bring up Celltrend. It's peaked my curiosity. I have only had the Mayo panel done which repeatedly shows an elevated n-type calcium channel antibody. I think the general thought these days is that most POTS patients have an autoimmunity issue. I hope your Celltrend results help shed some light on your condition and provide you with some treatment direction.

Edited October 1, 2017 by Psalm 23
Changed a sentence and for clarification

[p8d]

You sound quite similar to me Psalm 23 except for the bp.  Mine fluctuates too much but I am hyperadregenic too.  After my positive ANA for mixed connective tissue disease I was put on Plaquenil which has helped the most with fatigue and pain in my joints but the fatigue is still overwhelming.  Thank you so much for responding.

[Psalm 23]

Hello p8d,

I'm sorry my last post was not very clear. So I edited it. With regard to my b/p it is actually very labile with the exception of my ttt pressures which are very high so beyond the 10 minute standing time my b/p is all over the place. It does sound like we are very similar in that regard after all.

I was mistakenly diagnosed with lupus by two different Rheumatologists and put on Plaquenil for 6 years which temporarily helped a number of different non-lupus symptoms which never made any sense until recently. Interestingly Plaquenil is now being used for POTS patients as well as for a number of other thought to be autoimmune conditions. If I don't realize any improvement from the Imuran I may go back to trying Plaquenil again. I actually had a choice of trying Imuran or retrying Plaquenil in conjunction with the IVIG. I chose the Imuran because I wanted a more aggressive approach.

I'm sorry you are also dealing with debilitating fatigue.

[p8d]

Psalm23, Interesting about Imuran being more aggressive, I didn't know that.  My rheumatologist was considering it when I was having digestive issues which Plaquenil made worse.  My gastroenterologist said to take Imodium if that works and allows me to take my meds.  She said retaining the meds was the most important thing.  Rheumy agreed so that's what I do.  Next time I see the rheumatologist I'll ask about Imuran again.  

Do you think that the IVIG helps with the overstimulation?  I'm housebound because of that and the fatigue.  I haven't found anything that helps with the overstimulation. PCP prescribed transdermal scopolamine but I haven't tried it yet.

It's nice to find someone with such similar issues, although I wish neither of us were so afflicated. Thanks so much for the info!

[Psalm 23]

That's great that taking Imodium allows you to tolerate your Plaquenil. Bare in mind that if you were to take Imuran there is a lot of lab work required. One has to first have a Thiopurine methyltransferase test to determine whether or not you are even a candidate for taking Imuran. After starting the med there are weekly then every other week labs which eventually become monthly for the duration. Basically CBC with diff and liver function studies.

What I call my low sensory overload threshold actually improved prior to starting the IVIG. It began to improve after starting on Clonidine and Mestinon and then improved more after starting on a mast cell cocktail. I think over time what has also helped has been my growing ability to block out noxious stimuli. I am still overly sensitive to motion and noise but in addition to med assistance my tolerance level is greater. Basically the passage of time has helped and also learning how to control my environment when possible. I'm sorry the stimulation sensitivity issue is so disabling for you. I know how horrible it is. Interestingly one med I was on that greatly exacerbated the problem was Lyrica. It took me being on it for a while before I realized what havoc it was creating for me. I'm not familiar with the use of transdermal scopolamine for stimulation sensitivity. Sounds like it's certainly worth a try. Like you fatigue is my most disabling resistant to treatment issue. I'm running out of treatment options. What have you tried for fatigue ?

Yes. It is. So true. You're welcome. I wish I had something useful to offer up.

[Clb75]

Hi p8d,

I receive a magazine called IG Living, which is devoted to IVIG and all the things that come with it. I just got their current issue and there's an article about transitioning IVIG to Medicare. I have a hard copy, but you can go  to IG living.com and access it online. I thought it might be helpful to you and maybe answer some of your questions.

[p8d]

Thanks so much clb75.  I will look into it asap.

Psalm23, I tried Ritalin and something else in the same class and they both gave me tachycardia and diarrhea.  I believe there is something else out there in a different class  but I can't recall the name right now (brain fog today).  It's been three years now and I really want to go see friends and go anywhere other than Dr appointments and PT appointments.  What have you tried?

[Psalm 23]

A number of years ago I tried low dose naltrexone as was recommended by my then Rheumatologist. He said it might help sleep ( which is no longer an issue), pain and fatigue. I gave it 6 months. Three months of 3mg then three months of 4.5mg. It did absolutely nothing for me. I'm glad some people are receiving some benefits from it. A few years after that he recommended I try Nuvigil. It caused severe insomnia and greatly increased my already significant flu-like feelings so that med only worsened everything. A number of years later after being diagnosed with mod-severe OSA my Pulmonologist recommended I try Provigil ( modafinil ). I told him about my bad experience with Nuvigil but he said he didn't think I would experience those problems with Provigil so I decided to gave it a go. Unfortunately I did suffer the same side effects. Only to a lesser degree. I later read something somewhere that people with mast cell issues generally had problems with meds like Nuvigil and Provigil. I then asked my Pulmonologist about trying Adderall which I had read some sleep apnea and pots patients were being prescribed. He was agreeable to that.

So at this point how do I manage my fatigue; I take 5 mg of Adderall maybe two to three times a week. I never take more then the 5mg, I rarely take it past lunch time and I rarely take it two days in a row because while it does allow me to do more I have to expect I will require a lot more rest the day after. I suppose it's a bit of a push/crash effect. It's not a perfect approach but I'm desperate and I feel I need to do something to gain a greater degree of function at least some of the time. For me doing this is a bit of a risk because of the labile b/p. My Neurologist tells me to be very careful with taking this med and I'm afraid to tell my Cardiologist.

On a side note have you ever had a sleep study done ? In thinking back to how long I complained of severe fatigue among other things I still can't believe how long it took for someone to finally recommend a sleep study. I was really surprised at the results. Consistent use of my CPAP has helped my fatigue maybe 10 percent. Not what I had hoped for but I'll take what I can get. Some people I have spoken with say using a CPAP changed their life.

I'm still trying to be hopeful that at some point the Imuran/IVIG combination therapy will improve my fatigue.

I know how isolating having a chronic debilitating condition can be. I'm sorry you're dealing with this situation as well.