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. 

6 hours ago, MikeO said:

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

Thanks!

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?

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.

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!

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… 

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! 

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.

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.

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!

Thanks! I have only taken regular thiamine. I’ve gotten 2 cycles of IVIG now and am being switched to Gamunex due to infusion reactions and aseptic meningitis. I’ll check out that blog!

LDN is not supposed to be as effective if taken in the morning, but it messed up my sleep less. I don’t think it helped me, but I do keep getting worse, and maybe it slowed that. I made up my own, so it was extra cheap. I do the TENS vagal stim and would love to do SGB.

18 hours ago, supertired said:

@RecipeForDisaster IVIG can be rough at first for some people, me included... The first go-round can be the worst... If it doesn't get better and easier each round, make sure you talk to your doc about adjusting the days/dosages/rate... That worked for me eventually to get it tolerable, but it took a really long time to figure out exactly how to parse out the dosages and rates... I'd suggest seeing how the second round goes, and go from there...

Also, the pre-med steroid dose should really be rather tiny - just enough to keep you from experiencing an allergic reaction to the IVIG... really shouldn't be a big deal for most people. And also, the IVIG injection/insertion site should definitely not have been burning or itching... if that happens again, do please alert your nurses - I would suspect they know what an infiltration looks like - it would have been obvious I think if you'd had that, but you might have been having a reaction to the dressing they used... some may be more likely to contribute to that than others. FWIW.

I figured… another neurologist suggested we change the brand AND change the dosing from every 6 weeks to weekly. I can’t do the latter since I won’t have enough veins… but I think the ordering neurologist isn’t interested in these suggestions from the peanut gallery. I’d love to switch brands. The rate is already slow enough to make it take 6+ hours.

I would have liked to see the methylprednisolone dose more like 40-80mg. 

My IVs were definitely patent, no infiltration. We ran another liter of fluid after IVIG without a problem. I think it’s allergy - I’ve never had that itching and burning before. I told the nurses. One was concerned, the other was blasé. I actually have no dressing on my IV sites, because there are none I can tolerate! I have only silicone tape and gauze/gauze net.

Thanks for your help! I hope I don’t have to split the dosing up, just to save my veins…

On 8/2/2022 at 6:44 AM, Pistol said:

@RecipeForDisaster - there are other ways to administer daily IV's. There are peripheral IV lines that can stay in place for 30 days. Then there are mid lines that go up a little higher in the vein but not up to the heart, like a port or PICC line do. These IV accesses are much less risky but allow you to infuse at home. Have you discussed these with you docs? They have less of a clotting or infection risk. 

My sister also just had a port inserted for POTS. The type of dysautonomia that runs in my family is a genetic flaw and none of us respond to increased fluids - they get peed right out, whereas IV fluids stay in the system. In our case the benefits of IV fluids in increasing the quality of our lives are much greater than the risks. 

I had severe COVID followed by sepsis last fall, and somehow in that process I developed blood clots. I was on blood thinners for a few months but was able to go off them since my condition normalized. I tolerated them well. I used to pass out a lot and take seizures ( before IV fluids ) and back then I would not have been allowed to take them due to the risk of hitting my head in a fall and causing brain bleeding ( @MikeO that is what I am worried about with you and blood thinners, since you fall so often ). 

The decision to get a port is very individual and you should be sure that you are doing the right thing. In my case I will never go back - IVs have given me my life back! But blood clots and infections can be life threatening, so it is a very individual choice. Hopefully you will improve on the IVIG so you do not need IVs any longer! Here's me keeping my thumbs crossed!

Yeah, I can’t have anything but short peripheral IVs, which we can keep for a couple of days if we use heparin. Midlines or PICCs are still too risky for me.
 

I know we have this sort of thing in our family, too. Most of us don’t get thirsty or benefit much from drinking fluids. I have a novel mutation, but nothing known found on genomic sequencing.

It's such a hard balance - try to save my veins by not doing fluids often(and avoid dragging a pole around) or do better. If IVIG helps me, I will be overjoyed. I’m thinking positive, even if it’s a placebo effect that helps. 

4 hours ago, MikeO said:

I have at times thought about having a port put in but like you reality kicks in. Like what would i put down this thing anyways.

I did look at getting IV infusions but in the course trying various hydration strategies i have found what works for me (just takes an effort to keep up) I also demonstrated (at least to my self it is affective) last two hospital stays i hardly touched the IV bag prior i would have sucked a bag down in no time. Even the nurse in Madison noted this as well.   

IV fluids are what help me more than anything else, and I’d be prescribed daily fluids if I had a port. Plus the blood draws, iron infusions, and IVIG… drinking just doesn’t help me much, even though it’s salted hydration solution. My body isn’t right. 

I am pretty young, but I have a lot wrong with me. I almost never miss a med, but it was a perfect storm that day. I didn’t notice until I asked myself why I was having so many PVCs and why my HR was so fast just walking - those two things were fairly well controlled on acebutolol. 

Sometimes I do fantasize about having a port, but then I come back to reality. I just don’t think I’d do well. I’m allergic to aspirin, NSAIDs, etc. so I would have to go right to the bigger gun anticoagulants. There are lots of genetic causes to clotting… we have 3 in my family, but I only got 2.

12 minutes ago, Pistol said:

@RecipeForDisaster - you mention you are on steroids with your IVIG - I don't know if you only take one dose before the infusions or are on them for a few days, but in my case I must always ween off them slowly or I get a terrible flare. Even if I am only on them for a few days. 

You mention that some hematologists don't want you to have a port because you cannot be anticoagulated long term - why would you have to? I have a port and am not on anticoagulants. Or do you have problems with clotting? 

I so hope the best for you, and that this will finally bring some relief for you!

 

I’ve never gotten the steroids before - it’s a big dose before each of the 2 days of IVIG. I hope it goes okay, but if I don’t have an infusion reaction, I’m going to ask for a dose reduction on the steroids. I'm sure it’ll be hard coming off the steroids!

I have several clotting disorders and a quadruple average clot risk. My dad had 2  strokes in his 40s from them. At first I was told I could never have permanent access, but now some are saying "go ahead, you’ll just have to take anticoagulants long term"… yeah, not with how many falls and injuries I have!

Thanks for your support - you guys have been such a help.

4 hours ago, MikeO said:

I totally get the meds last year i was only on two + Vitamin D supplement this year i am on seven + the vitamin D would have never figured i would end up here but they are needed. I often wondered if i have a autoimmune issue or some nerve damage especially in my left leg but like usual once you think you have your finger on it stuff changes.

Magicly my hip/butt cheek pain subsided today and my GI/Heart pains kicked in Haha. I do have tools to work with this and will be on the forefront of my upcoming Cardio visit.

Knowing my luck i broke a chunk of plaque from my iliac and now my butt is getting more blood and got stuck somewhere else. as always more to the story coming.   

My PCP's office has a list that totals 47 meds for me! I think there are duplicates and stuff, but OMG, that’s horrifying. I know it’s over 30. I know can’t do without most - actually, I forgot my morning meds the other day, because we lost power, I couldn’t see, and didn’t have coffee or my normal routine, and man, did I do poorly without them. 
 

Congrats on getting better butt blood flow, ha! I hope you get it figured out. 

56 minutes ago, MTRJ75 said:

There are many medications and treatments I initially refused. That list has greatly dwindled over the last five to seven years. 

I totally agree! I have even softened to taking corticosteroids if someone wanted to try them now. I’m definitely autoimmune and have such low BP, appetite, etc - it might be worth it. I said I wouldn’t try 1/2 the meds I’m using now!

You might want to try taurine for PVCs - I’m now on an anti arrhythmic, but it helped my palpitations and PVCs before they got worse! I think it does still help. I learned this here.

10 hours ago, MTRJ75 said:

Why is it so hard to find a win? This specific scenario was the main reason my neurologist said he was against IVIG. I hope you find a positive way through it. 

I was so ready for a lot of doctors to say "don’t bother, it’s not safe/worth it”. But, they are all rooting for me and encouraging me to keep going - it seems it’s really my last hope. I told them I can tolerate discomfort if it’s going to help, as long as it’s OK. I just don’t want the infusion reactions to get worse, and the steroids should help with that. Heck, maybe they’ll have the side effect of helping my BP, appetite, and stuff.

A year or so ago, I told my friends and a few doctors that I’d never do IVIG, it was too scary/risky for questionable benefit. Here I am, having gotten worse and failed in so many ways since then… yes, I’m all in now. The same thing happened with getting a port for hydration and stuff - almost all doctors were against it, and now they all ask why I don’t have one(or get one ASAP)… except a couple of hematologists who say I’d better not since I can’t be anticoagulated long term.

9 minutes ago, MikeO said:

I am so sorry to hear this. Glad you are back on track and doing well. I was hoping you would be able to skate thru this with few issues. Stick with it!

"Skating through" is always my hope, but my body doesn’t usually allow that. I did so well with the iron infusions, though, that I stupidly figured I might manage this easily, too. There are other options, like changing the brand and doing smaller doses more often, so all is not lost yet even if the steroids don’t do it. I’m going to give it the full year. Thanks! But my "regular" is basically garbage, haha.

Back to my regular, thanks for asking! The neurologist said I had aseptic meningitis AND infusion reactions both days, so they added IV steroids before each dose. I’m told I won’t see improvements for 6 months, but I’ll keep getting aseptic meningitis,ugh!

4 hours ago, MTRJ75 said:

Hopefully, the response from the nurses was because this is a common reaction they're used to seeing. 

I get what you mean about willingness to go through any temporary h*** if it meant long term relief. I'd probably make the same decision you are. 

I think it’s common, but it’s not benign… and allergies tend to get worse with each exposure. They didn’t even listen to my lungs or look for rashes, so they did not really know if it was okay. I felt that my airway was involved, even though I managed to keep air moving! So far it’s 3 really lousy days every 6 weeks, although I’m not over the headache/fever/chills yet. That’s definitely worth it as long as it’s safe!

7 hours ago, MikeO said:

@RecipeForDisasterI was wondering about some of the initial side effects (pretty much suspected you would have some) but sounds like you have pushed thru them. Good Job!

Glad to hear your positive attitude and have not thrown in the towel right off the bat. I really hope the IVIG treatments work.  

When something is difficult, I dig in my heels. This may be my last chance at getting better, too. This may be aseptic meningitis, which apparently is not too dangerous. I’ll give it a year if I don’t get worse (that timeframe is what the ordering doctor set).