Ideas for things to get now that I met my out of pocket max?

[RecipeForDisaster]

Thanks to IVIG, I have spent the catastrophic maximum per my health insurance, and have no more copays or coinsurance this year (probably never again). I have never done this before, and usually skimp on everything, taking my expensive PRNs as little as possible, getting things used, not getting custom fitted compression, etc. I did order CPAP supplies. I normally owe 30% on all of this stuff.

Can anyone recommend things I can get, other than refills on my PRNs, looking into custom fitted compression (and a tool to get them on?), etc? I wanted OTC meds, but I can’t get those. I just don’t know what else is out there. I can get most anything prescribed for me - I use a lot of services, meds, and items!

[MikeO]

6 minutes ago, RecipeForDisaster said:

looking into custom fitted compression (and a tool to get them on?),

I would do this one for sure, especially the tool! Not sure if you have a use for a blood glucose meter? even if you don't it's still good to know your numbers from time to time. Maybe some PT time. case of miller lite, custom fitted abdominal binder. Do you need any sleep aids like custom pillows?

[RecipeForDisaster]

1 hour ago, MikeO said:

I would do this one for sure, especially the tool! Not sure if you have a use for a blood glucose meter? even if you don't it's still good to know your numbers from time to time. Maybe some PT time. case of miller lite, custom fitted abdominal binder. Do you need any sleep aids like custom pillows?

The tool isn’t covered (sigh). Case of Lite - yes!! I would love them to cover some salt, seriously. Binders make me not eat as long as they are on.

 

Interesting on the pillows. I have a wedge, and a knee pillow, but wonder what else is out there. I really need an IV warmer, but I don’t think that’s covered.

[MikeO]

3 minutes ago, RecipeForDisaster said:

The tool isn’t covered (sigh). Case of Lite - yes!! I would love them to cover some salt, seriously. Binders make me not eat as long as they are on.

 

Interesting on the pillows. I have a wedge, and a knee pillow, but wonder what else is out there. I really need an IV warmer, but I don’t think that’s covered.

Only other thing i can think of is a new bp monitor (bluetooth enabled) I know some insurances will pay for these.

[Pistol]

30 minutes ago, RecipeForDisaster said:

I really need an IV warmer, but I don’t think that’s covered.

What I do is I wrap my IV fluids next to a hot water bottle inside of a wool scarf for about 30 minutes prior to infusion. ( I do not recommend this for anyone that needs temperature controlled fluids, it is not a substitute for IV fluid warmers ). 

I also would use a tool to help putting on compression garments. They can use two weeks worth of energy by putting them on every morning, unless you have someone who can do it for you!

[RecipeForDisaster]

I have a hard time getting compression on WITH help! They do not cover devices to help with this. It’s exhausting. I will get a real, Rx set, because I’m told those are easier to get on. I guess I have to qualify for custom fitted ones, and there is no one in my state who does it!

 

I use a hot water bottle, and made an insulated sleeve, but it doesn’t last long enough. My infusions are over about 8 hours per liter. I also use a wrap around heating pad on my arm, and that helps, but… not enough.

[RecipeForDisaster]

I actually don’t have copays for labs at any time. Nor a deductible. I usually don’t complain about my plan, but now I have paid $6500 out of pocket despite these good things! 
 

I have had a bunch of CTs and MRIs this year - luckily, I don’t seem to need more. The drug copays - definitely. We are playing with the droxidopa dose, so that one is a no brainer at $85/month. I love the half pill trick - except so much of what I take is capsules! 

[MikeO]

I can't say i have done the half pill trick but as my Amlodipine dosage changed (lower dose) i have more than i know what to do with right now. Unfortunately all my other meds can't be split. 

[MikeO]

11 hours ago, RecipeForDisaster said:

We are playing with the droxidopa

I would like to see how the Droxidopa works out for you. My specialist was gearing up to have me trial it but withdrew at the last minute due to some contradictions. Hope it helps you!

[RecipeForDisaster]

27 minutes ago, MikeO said:

I would like to see how the Droxidopa works out for you. My specialist was gearing up to have me trial it but withdrew at the last minute due to some contradictions. Hope it helps you!

It’s a little scary. I worked up to 300mg 3 times daily, but they want to go up to 600mg. It does help the orthostasis for sure! It does not help my BP and feeling awful all the time - and it seems to give me worse chest discomfort and palpitations. It’s worth it when I need to bend or get up a lot. I use it when I plan those things… 

[RecipeForDisaster]

9 hours ago, DysautonmiaMatt said:

One more trick is near the end of the year see if any of your meds can be re-filled. Sometimes they allow a week or 2 in advance.  All they can do is put in through and see if its approved. Doesn't apply to controlled drugs. They make some drugs in liquid form too. You can check on Goodrx or ask your pharmacist for those meds that you take in caps right now. 

For sleep would your insurance cover one of those fancy adjustable beds if ordered by your doctor?  My cousin has one and it was covered by the VA because of back injury while serving.  Have you had a full sleep study done?

Genova NutrEval FMV was covered by my sister's plan for her daughter. Maybe your plan will cover it. Another is Genesight's test just in case you ever need to take any SSRIs, sleep aids etc  Labs can be really expensive so hope you can max out and test for things that have not been tested for in past ideally providing some help in treating your condition. I wish I have maxed out my out of pocket. I would be at the doctors all the time getting testing done. 

They make many OTC drugs still in scripted form. My allergy med is one that is OTC but scripted its cheaper with insurance. Check GoodRx and your insurance website to see if its on the list.

I refilled as much stuff as I could. I should meet the OOP again next year, so there is not a great race, but I do want to get whatever I can. My mom has a prepaid card from Medicare that she can use for tape, heating pads, you name it, but I don’t seem to have a benefit for that - and it doesn’t matter if OTCs are prescription strength and prescribed, they are not covered (my allergy treatments, too).

 

Genesight is something I’d already requested, and was somewhat shot down. I will love into the FMV. But, my labs are always free. Thanks!

[RecipeForDisaster]

I think my mom had this. I don’t have any psych issues, though, and I don’t think any sleep meds I would take would be related… at least by exploring the site. There was a pharmacogenomics test that included cardiac medications - I was still told I didn’t need it, and I tried a whole bunch of doctors. I take like 6 cardiac meds.

[MikeO]

43 minutes ago, RecipeForDisaster said:

at least by exploring the site. There was a pharmacogenomics test that included cardiac medications

There is an outfit in Milwaukee that does the pharmacogenomics testing as well. My Doc is aware of it and did confirm it is used to get psych meds dialed in. For now i have put this on the back burner. my cardiac meds have been stable for now. @Sushihas had the testing as well.

[Sushi]

3 hours ago, MikeO said:

There is an outfit in Milwaukee that does the pharmacogenomics testing as well. My Doc is aware of it and did confirm it is used to get psych meds dialed in. For now i have put this on the back burner. my cardiac meds have been stable for now. @Sushihas had the testing as well.

I find that pharmacogenetics testing is extremely valuable. The test I had covers a huge number of drugs and even if a drug isn’t covered, once they test your metabolic pathways, you can look up any drug you are considering to see if it is metabolized through a compromised pathway. For me, CYP2D6 is is very compromised and a lot of drugs use this pathway. I am now convinced that many of what we call drug reactions happen because they are metabolized through pathways that are genetically compromised.

[RecipeForDisaster]

9 hours ago, Sushi said:

I find that pharmacogenetics testing is extremely valuable. The test I had covers a huge number of drugs and even if a drug isn’t covered, once they test your metabolic pathways, you can look up any drug you are considering to see if it is metabolized through a compromised pathway. For me, CYP2D6 is is very compromised and a lot of drugs use this pathway. I am now convinced that many of what we call drug reactions happen because they are metabolized through pathways that are genetically compromised.

I would really like to get this one done! I will try my PCP - I think she said she was not familiar with ordering it, while everyone else said I didn’t need it. I think I am an ultra rapid metabolizer of metoprolol, for instance. Which test did you have?

[MikeO]

@RecipeForDisasterhere is RPRDx Diagnostics website. good read.  https://www.rprdx.com/ 

[RecipeForDisaster]

6 hours ago, MikeO said:

@RecipeForDisasterhere is RPRDx Diagnostics website. good read.  https://www.rprdx.com/ 

Thanks!

[MikeO]

6 hours ago, RecipeForDisaster said:

Thanks!

Welcome!

[Sushi]

On 9/30/2022 at 4:27 AM, RecipeForDisaster said:

I would really like to get this one done! I will try my PCP - I think she said she was not familiar with ordering it, while everyone else said I didn’t need it. I think I am an ultra rapid metabolizer of metoprolol, for instance. Which test did you have?

How did you respond to metoprolol? It came up under the ‘never take’ list for me because I am a poor metabolizer of CYP2D6. I took a test from Asperio Labs, but it is no longer available. Had I not had that test, I would have been prescribed metoprolol. Because of it I was prescribed propranolol instead.

[RecipeForDisaster]

On 10/1/2022 at 3:14 PM, Sushi said:

How did you respond to metoprolol? It came up under the ‘never take’ list for me because I am a poor metabolizer of CYP2D6. I took a test from Asperio Labs, but it is no longer available. Had I not had that test, I would have been prescribed metoprolol. Because of it I was prescribed propranolol instead.

I’m in a tough spot, because I have bad asthma and need to try not to lower my BP at all. I do okay on metoprolol, but it’s out of my system quickly (even with the "24 hour" version). I take acebutolol during the day instead. It makes it hard to sleep, or I’d take that twice a day. 

[MikeO]

4 hours ago, RecipeForDisaster said:

I do okay on metoprolol, but it’s out of my system quickly (even with the "24 hour" version).

Had the same with the extended release. I would come up about 6 hours short.

[RecipeForDisaster]

4 hours ago, MikeO said:

Had the same with the extended release. I would come up about 6 hours short.

I only get about 6 hours out of mine! It’s wild.

[MikeO]

15 minutes ago, RecipeForDisaster said:

I only get about 6 hours out of mine! It’s wild.

Must be the dang public toilet seats Haha. My current beta blocker has been doing better. 

[RecipeForDisaster]

15 hours ago, MikeO said:

Must be the dang public toilet seats Haha. My current beta blocker has been doing better. 

Haha!

 

It's tough, I can’t really try another due to my BP and asthma. Acebutolol works okay during the day, but I can’t sleep if I take it at dinner or later.

[RecipeForDisaster]

13 hours ago, DysautonmiaMatt said:

Have you tried Atenolol? 

I think it’s not selective enough - they don’t think that one would safe. Most of them are not for me.