RecipeForDisaster

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.

Thanks!

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.

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!

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.

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.

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…

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.

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.

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.

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.

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.

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.

"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!

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!

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).