She's definitely not got a gluten problem, but I think the issue might be with some yeasts - I can't remember the deets but I'm fairly sure beers are out for her in any case
Technically she can drink whisky, but isn't a fan. I'm trying to convert her.
Hmm.. While most distilled spirits won't have the same residual sugar in wines, nothing stops you from shaking in a little syrup and calling it a cocktail. Or maybe go with aged rum, the secret being most of those are dosed with sugar.
I don't ... it's not the sugar she's missing ? What?
Anyway it's because she has guilliane-barre so it's all really fucking complicated, but gin cocktails are a lifeline. I was mostly commiserating with butlers new wine migraines.
Munkus BeaverYou don't have to attend every argument you are invited to.Philosophy: Stoicism. Politics: Democratic SocialistRegistered User, ClubPAregular
I went in for a scope earlier this week and before I went under I got my doctor with the updog joke
I have never been happier
Humor can be dissected as a frog can, but dies in the process.
My younger sister always had terrible allergies, virtually all fruits and vegetables, latex, certain types of tree barks, basically all nuts.
There were others as well but probably the worst was being allergic to her own sweat. Just break out in hives if she did something active.
Interestingly enough in the last 3 years the allergies have become much less severe. She started introducing certain fruits like apples and strawberries while also eating bananas (bananas and watermelon being the only fruits she could eat before).
Doctors didn’t really have any answers for her but even the sweat allergy has subsided.
The only one that is rough for her now are nuts.
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UnbrokenEvaHIGH ON THE WIREBUT I WON'T TRIP ITRegistered Userregular
edited March 2020
Hey chronic illness thread, been a while
About a year ago I was diagnosed with keratoconus (NBA fans may know it as “the reason Steph Curry was playing half blind flor most of his career until last year)
Basically my corneas kept getting thinner and losing their shape in a way that glasses can’t correct. Got diagnosed, got rigid contacts that hold things in shape, saw better than I had in years.
Now, keratoconus often stops progressing as you get older, and that did happen with my right eye. My left eye, however isn’t so cooperative and the cornea has continued to thin/change shape. There is a fairly new procedure that can correct this by reinforcing/making the cornea more rigid, which is good as the alternative of it continues to progress is a corneal transplant and... please no?
So in about 10 minutes I’m getting corneal Crosslinking done. Spoiled for the squeamish:
The doctor is going to numb my eye, remove the outer epithelial layer over the cornea, then drop in a bunch of vitamin b/riboflavin, then I stare into a UV light for 10 minutes. After that I get a bandage contact lens to protect it and start on antibiotic/steroid eye drops.
By all accounts I’ve got about 2-7 days of “severe discomfort” to look forward to while the epithelium grows back, and potentially a few weeks of blurry vision after that. Yaaaay?
At least it’s just the one eye.
UnbrokenEva on
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UnbrokenEvaHIGH ON THE WIREBUT I WON'T TRIP ITRegistered Userregular
Eye stuff squicks me out immediately. Can't even wear contacts. My response to learning you had to gel your eyes after lasik was to write off lasik. Well okay, it was to consider just staying up 24 hours afterwards and doing the eye drops but I'm pretty bad even with just eye drops.
I get mild but chronic dermatitis and recently got a prescription for a stronger steroid cream.
Doctor: This will almost certainly clear it up, but you might need to give it a while, like eight weeks or so.
Pharmacist: Do not use this stuff for more than a week, two weeks absolute maximum. PROMISE ME YOU WON'T GO OVER (okay they didn't say that bit but they were pretty emphatic).
This isn't the first time I've noticed this disparity between pharmacists' and doctors' recommended use for drugs. I usually just smile and nod and go with whichever time is longer.
What they mean by 2 weeks maximum is likely don't use it more than two weeks continuously, if you do stop for a week then do it again if you need.
That's what I've always been told to do with the fairly strong topical steroid ointments I've been prescribed for my psoriasis.
Yeah nobody warned me when they gave me The Strong Stuff for my eczema and my body got dependent on it (while it simultaneously became less effective). The withdrawal symptoms were absolutely fucking miserable and my skin was fucked for like a year as a result
I only use steroid creams for 2-3 days max nowadays if I can help it. The rest of the time I'm using protopic (which I'm also trying to limit down due to cancer risks) and eucrisa (which is the safest of the three, but doesn't really seem to work, or rather, flareups occur while using it anyway). Meeting with dermatologist today who can hopefully recommend another new thing to try
Edit: my dermatologist has told me that currently the opinion of the CDA is that protopic is safe. So I guess I'll stick with that.
UnbrokenEvaHIGH ON THE WIREBUT I WON'T TRIP ITRegistered Userregular
eye recovery day 2: sucks much less. I’ve gone from using the numbing drops they gave me every 2-3 hours to once in the last 12
which is good, because they only gave me a dozen drops to make sure I didn’t overuse it. There appears to be one or two drops left, so I’d say I rationed them just right.
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UnbrokenEvaHIGH ON THE WIREBUT I WON'T TRIP ITRegistered Userregular
Eye recovery day... 5?
Had my follow-up today. doctor confirmed everything is healing up normally. Still on steroid drops for another few weeks, and even if I didn't need to give it a bit more time before putting my hard contacts back in, things are still blurry in a "fog on the lens" sort of way in that eye and no contact is going to fix that, only time. I can wear my right contact though, so I can see well enough to function, it's just really weird because only one eye is giving useful input, the other is just enough to provide depth perception.
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ShadowfireVermont, in the middle of nowhereRegistered Userregular
Haven't posted in here before but I'm having a rough go of it right now and wanted to get some takes from folks. And also complain? I dunno.
My wife's been dealing with some shit the last few months. Severe depression, anxiety through the roof, exhaustion. About two months ago, out of nowhere, she started having vision trouble. Her right eye wasn't seeing red, couldn't make out details, just screwed up. Let it go for a day then called her primary who got her an urgent referral to ophthalmology. The jackass there told her to use eyedrops because her eyes were just dry and ignored her as she tried to ask questions when he walked out. She came home just heartbroken like she's a crazy person.
The eye didn't get better and I finally convinced her to stop thinking she's crazy and go to her regular eye doctor who ran tests and found optic neuritis and neuropathy. She referred my wife to the ER and printed two copies of the tests to bring with her, as well as giving my wife her personal phone number in case we needed someone to yell at people for her. Off we went and after almost 24 hours in the ER with multiple blood draws, MRIs, reflex tests (which she failed, yay!) and a lumbar puncture to test fluid pressure and get spinal fluid for testing, I finally brought her home to rest. She saw someone in neurology briefly who ordered more MRIs, one of which got done, but then things kind of went to shit.
She kept calling and being put on hold or told someone would call, but no one did. Finally last night she got a call from her neurologist who scheduled an appointment for next week. Great! He talked through some stuff with her, they want to do another lumbar puncture, etc etc. That's all good. Today? Got another call from a secretary, this time cancelling the appointment. When she asked to speak to the doctor, all of a sudden he doesn't work there. On top of all that, the STI company we use is jerking us around trying to get her paid so we've been struggling on one income and basically just not paying a bunch of bills.
I'm going crazy. She is too. I know the world is on fire because of coronavirus, but is there anything we can really do at this point? Any resources worth reaching out to?
I'm not a doctor med professional but it sounds like it should be an emergency, tbh - anything involving optic nerve damage, or anything they're recommending a lumbar puncture for, is usually something that should be handled sooner rather than later
How the fuck do you fuck up the billed amount three fuckin' times when it comes to whether or not a patient/customer/client/whatever I'm supposed to be has insurance? Especially when I've called twice to correct you?
You send me a stupidly high no-insurance bill, I call you back correcting you and give you my insurance information. So you apologize and then do it again, so I have to call back and correct you again. Then you do it a third time! This is not difficult; it wasn't even the only thing I was billed for from that day, and everyone else knew I had insurance and ran it by them first. Good lord how are ya'll this incompetent?
Fuck, just get it together.
Sorce on
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ShadowfireVermont, in the middle of nowhereRegistered Userregular
Wanted to update since it was a while ago that I dropped in here in a panic. The final diagnosis is MS. The wife had a telehealth appointment today, I got to hold the phone for a couple minutes while she walked back and forth so the docs could see. She talked with them for over an hour about symptoms and such. Because of Covid she can't go in and do the infusion treatment, so they're going to be prescribing an injection that is done daily, as well as a pill three times a day. And I'll get to help. I got a good chuckle out of telling her I was excited to stab her every night.
On the downside, the injections are about $30k/year. And because of the cost insurance companies almost always fight it. So that'll be fun. Also no idea what our copay is going to end up being but probably a fucking fortune. Yay.
Wanted to update since it was a while ago that I dropped in here in a panic. The final diagnosis is MS. The wife had a telehealth appointment today, I got to hold the phone for a couple minutes while she walked back and forth so the docs could see. She talked with them for over an hour about symptoms and such. Because of Covid she can't go in and do the infusion treatment, so they're going to be prescribing an injection that is done daily, as well as a pill three times a day. And I'll get to help. I got a good chuckle out of telling her I was excited to stab her every night.
On the downside, the injections are about $30k/year. And because of the cost insurance companies almost always fight it. So that'll be fun. Also no idea what our copay is going to end up being but probably a fucking fortune. Yay.
For me, take at home injections were under the prescription portion of my coverage. In office infusions get billed as a specialist visit, though drug makers often have cost reduction programs with patients.
Obviously depends on the structure of your plan but if you're on a deductible before copay plan I'd fully expect to hit the deductible unless the drug makers have subsidy programs (even then, you'll hit it but they might pay part of it). I don't know where she gets her insurance from but it might be worth reaching out to the involved HR. They might not know but if the source uses an insurance broker a lot of them will get involved to help you understand what's going on and will have contacts at the insurance company directly.
I'm not a doctor med professional but it sounds like it should be an emergency, tbh - anything involving optic nerve damage, or anything they're recommending a lumbar puncture for, is usually something that should be handled sooner rather than later
@tynic this is the best humblebrag I've ever seen, and I mean that in a completely good way. It made me smile :biggrin:
"You are going to keep receiving 'past due' letters for this bill until we can talk to your insurance agency and get this all straightened out. Also due to COVID, wait times are 6-8 weeks for issue resolution." Fuckin'.... goddamnit.
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Munkus BeaverYou don't have to attend every argument you are invited to.Philosophy: Stoicism. Politics: Democratic SocialistRegistered User, ClubPAregular
Had my routine IV treatment yesterday and it didn't go routine at all. After about fifteen minutes on the line I suddenly get very hot, start hiccuping and nauseous. End up vomiting and freaking out all the care staff. They dump a bunch of steroids and benadryl into my IV and give me some Zofran. Ended up feeling immediately better afterwards, albeit pretty damn sleepy from the benadryl. It is super weird as that is not a normal sort of odd reaction to Remicade so folks are just stumped. I've been taking it for around 5 years now and aside from an initial allergy reaction I've been fine. So this is very puzzling.
On the other hand, those steroids they dumped in seem to be making my bum knee feel GREAT this morning.
hahaha
I typed "I am not a doctor" in all sincerity and then right before I hit post I went 'oh, ... wait'
I originally read the correction as "mad professional" because I'm tired. My first thought was "that's a weird way of saying mad scientist" and my second thought was "wait she's saying she's not a mad scientist?"
hahaha
I typed "I am not a doctor" in all sincerity and then right before I hit post I went 'oh, ... wait'
I originally read the correction as "mad professional" because I'm tired. My first thought was "that's a weird way of saying mad scientist" and my second thought was "wait she's saying she's not a mad scientist?"
true comic book level villains never admit it openly but you can always tell by their hair
Munkus BeaverYou don't have to attend every argument you are invited to.Philosophy: Stoicism. Politics: Democratic SocialistRegistered User, ClubPAregular
Yeah, I feel like the first request is always denied.
I do really encourage you or your wife to reach out to the Docs office and find out who handles this. Any doc who has to deal with prescribing the kind of drugs like this will basically have at least a person whose job is dealing with insurance companies and forcing them to give folks what they paid for.
Yeah, I feel like the first request is always denied.
I do really encourage you or your wife to reach out to the Docs office and find out who handles this. Any doc who has to deal with prescribing the kind of drugs like this will basically have at least a person whose job is dealing with insurance companies and forcing them to give folks what they paid for.
They have been fighting for a couple weeks, appealed a couple times. We're exploring options now, which might just be engaging our legal benefits from work to fight our medical benefits and let capitalism break itself.
Had my routine IV treatment yesterday and it didn't go routine at all. After about fifteen minutes on the line I suddenly get very hot, start hiccuping and nauseous. End up vomiting and freaking out all the care staff. They dump a bunch of steroids and benadryl into my IV and give me some Zofran. Ended up feeling immediately better afterwards, albeit pretty damn sleepy from the benadryl. It is super weird as that is not a normal sort of odd reaction to Remicade so folks are just stumped. I've been taking it for around 5 years now and aside from an initial allergy reaction I've been fine. So this is very puzzling.
On the other hand, those steroids they dumped in seem to be making my bum knee feel GREAT this morning.
Oh look, another infusion and another reaction. This time they prepped me with Benadryl and solumedrol first. Half an hour in I'm watching netflix with some noise canceling headphones on and I hear a weird whistling sound. Figured out that was me breathing so that was not a cool experience.
Infusion doc isn't telling me to not come back yet but is going to double the dose of the preparatory meds next time. Really hoping this isn't a long term thing as I've actually been feeling like things have been managed pretty well with my current treatment regiment.
Definitely sounds like you've developed an allergy. Or further developed one, I guess
Histamine reactions are one of those things that can get worse with exposure, but hopefully they can find a drug regime to balance it out.
It wouldn't surprise me if Remicade can trigger those, it's an immunosuppressant right? Might even be just related to the infusion itself and not the actual medication.
I remember that hiccups are a fairly common reaction with steroid injections, usually one of the precursors of a potential serious reaction with them, weird.
not a doctor, not a lawyer, examples I use may not be fully researched so don't take out of context plz, don't @ me
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Munkus BeaverYou don't have to attend every argument you are invited to.Philosophy: Stoicism. Politics: Democratic SocialistRegistered User, ClubPAregular
edited May 2020
Developing an allergy to remicade is extremely common and once it happens you can’t take it again.
Munkus Beaver on
Humor can be dissected as a frog can, but dies in the process.
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Blackhawk1313Demon Hunter for HireTime RiftRegistered Userregular
Post-endo haze here, but finally got some answers for my pain and reflux, diagnosed with GERD, a hiatal hernia my wife would have bet the farm on me having, and gastroparesis. The latter is the mystery bit really now to see what’s going on but explains while morning for me has been an absolute nightmare. Gastric emptying study scheduled now for next week so guess we’ll see where it leads.
Ok so my chronic but not severe low blood pressure issues have ramped up in the last six months and while I haven’t fully passed out since March, I’ve had a couple of close calls while hiking, and I now can’t go from sitting to standing without visual blackouts and a few minutes of vertigo (in the before times that would happen maybe 20-30% of the time at most, and now it’s ubiquitous).
On the one hand, it’s not great and quite annoying and I should probably see a doctor. OTOH, internet sleuthing has suggested that there’s usually no recommended treatment options unless theres also a larger underlying medical issue, which I don’t think is the case. So I’ve been putting off seeing anyone (because who likes drs appointments, and I think they’d just tell me to move more slowly when changing altitude and watch out for any other physical symptoms).
Anyway does anything slightly raise your blood pressure without being hella dangerous
Maybe I could eat more fruit? Fruit is good.
Ok so my chronic but not severe low blood pressure issues have ramped up in the last six months and while I haven’t fully passed out since March, I’ve had a couple of close calls while hiking, and I now can’t go from sitting to standing without visual blackouts and a few minutes of vertigo (in the before times that would happen maybe 20-30% of the time at most, and now it’s ubiquitous).
On the one hand, it’s not great and quite annoying and I should probably see a doctor. OTOH, internet sleuthing has suggested that there’s usually no recommended treatment options unless theres also a larger underlying medical issue, which I don’t think is the case. So I’ve been putting off seeing anyone (because who likes drs appointments, and I think they’d just tell me to move more slowly when changing altitude and watch out for any other physical symptoms).
Anyway does anything slightly raise your blood pressure without being hella dangerous
Maybe I could eat more fruit? Fruit is good.
You're consistently blacking out just from standing up? Make a doctor appointment immediately.
Caffeine exacerbates my insomnia so I mostly avoid it but I can handle black tea in the morning, I could probably drink more tea in general because it does help keep my hydration up, I'm not great at remembering to drink water.
Other stuff doesn't really fit - I don't think any of my meds have low blood pressure side effects, I only take corticosteroids for asthma. And my alcohol consumption has plummeted to basically zero since COVID because I only drink socially, so I don't think that's it. Salt, I could probably increase if I had to but I don't have a low sodium diet or anything.
You're consistently blacking out just from standing up? Make a doctor appointment immediately.
Not like, fainting, my vision just goes black for a few seconds, and I usually have to lean on something for a bit until it comes back and I don't feel dizzy. It's happened my whole life, so for a long time I assumed that's what people meant when they talked about a "head rush". It's definitely gotten more frequent just recently though.
Caffeine exacerbates my insomnia so I mostly avoid it but I can handle black tea in the morning, I could probably drink more tea in general because it does help keep my hydration up, I'm not great at remembering to drink water.
Other stuff doesn't really fit - I don't think any of my meds have low blood pressure side effects, I only take corticosteroids for asthma. And my alcohol consumption has plummeted to basically zero since COVID because I only drink socially, so I don't think that's it. Salt, I could probably increase if I had to but I don't have a low sodium diet or anything.
You're consistently blacking out just from standing up? Make a doctor appointment immediately.
Not like, fainting, my vision just goes black for a few seconds. It's happened my whole life, so for a long time I assumed that's what people meant when they talked about a "head rush". It's definitely gotten more frequent just recently though.
No no, I understood you the first time. That is more than enough cause for concern. Considering it has worsened significantly in a short period of time, you are into "talk to a doctor" territory.
Munkus BeaverYou don't have to attend every argument you are invited to.Philosophy: Stoicism. Politics: Democratic SocialistRegistered User, ClubPAregular
Get a salt lick, tynic
Humor can be dissected as a frog can, but dies in the process.
Posts
I don't ... it's not the sugar she's missing
Anyway it's because she has guilliane-barre so it's all really fucking complicated, but gin cocktails are a lifeline. I was mostly commiserating with butlers new wine migraines.
I have never been happier
There were others as well but probably the worst was being allergic to her own sweat. Just break out in hives if she did something active.
Interestingly enough in the last 3 years the allergies have become much less severe. She started introducing certain fruits like apples and strawberries while also eating bananas (bananas and watermelon being the only fruits she could eat before).
Doctors didn’t really have any answers for her but even the sweat allergy has subsided.
The only one that is rough for her now are nuts.
About a year ago I was diagnosed with keratoconus (NBA fans may know it as “the reason Steph Curry was playing half blind flor most of his career until last year)
Basically my corneas kept getting thinner and losing their shape in a way that glasses can’t correct. Got diagnosed, got rigid contacts that hold things in shape, saw better than I had in years.
Now, keratoconus often stops progressing as you get older, and that did happen with my right eye. My left eye, however isn’t so cooperative and the cornea has continued to thin/change shape. There is a fairly new procedure that can correct this by reinforcing/making the cornea more rigid, which is good as the alternative of it continues to progress is a corneal transplant and... please no?
So in about 10 minutes I’m getting corneal Crosslinking done. Spoiled for the squeamish:
By all accounts I’ve got about 2-7 days of “severe discomfort” to look forward to while the epithelium grows back, and potentially a few weeks of blurry vision after that. Yaaaay?
At least it’s just the one eye.
Eye stuff squicks me out immediately. Can't even wear contacts. My response to learning you had to gel your eyes after lasik was to write off lasik. Well okay, it was to consider just staying up 24 hours afterwards and doing the eye drops but I'm pretty bad even with just eye drops.
Yeah nobody warned me when they gave me The Strong Stuff for my eczema and my body got dependent on it (while it simultaneously became less effective). The withdrawal symptoms were absolutely fucking miserable and my skin was fucked for like a year as a result
I only use steroid creams for 2-3 days max nowadays if I can help it. The rest of the time I'm using protopic (which I'm also trying to limit down due to cancer risks) and eucrisa (which is the safest of the three, but doesn't really seem to work, or rather, flareups occur while using it anyway). Meeting with dermatologist today who can hopefully recommend another new thing to try
Edit: my dermatologist has told me that currently the opinion of the CDA is that protopic is safe. So I guess I'll stick with that.
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which is good, because they only gave me a dozen drops to make sure I didn’t overuse it. There appears to be one or two drops left, so I’d say I rationed them just right.
Had my follow-up today. doctor confirmed everything is healing up normally. Still on steroid drops for another few weeks, and even if I didn't need to give it a bit more time before putting my hard contacts back in, things are still blurry in a "fog on the lens" sort of way in that eye and no contact is going to fix that, only time. I can wear my right contact though, so I can see well enough to function, it's just really weird because only one eye is giving useful input, the other is just enough to provide depth perception.
My wife's been dealing with some shit the last few months. Severe depression, anxiety through the roof, exhaustion. About two months ago, out of nowhere, she started having vision trouble. Her right eye wasn't seeing red, couldn't make out details, just screwed up. Let it go for a day then called her primary who got her an urgent referral to ophthalmology. The jackass there told her to use eyedrops because her eyes were just dry and ignored her as she tried to ask questions when he walked out. She came home just heartbroken like she's a crazy person.
The eye didn't get better and I finally convinced her to stop thinking she's crazy and go to her regular eye doctor who ran tests and found optic neuritis and neuropathy. She referred my wife to the ER and printed two copies of the tests to bring with her, as well as giving my wife her personal phone number in case we needed someone to yell at people for her. Off we went and after almost 24 hours in the ER with multiple blood draws, MRIs, reflex tests (which she failed, yay!) and a lumbar puncture to test fluid pressure and get spinal fluid for testing, I finally brought her home to rest. She saw someone in neurology briefly who ordered more MRIs, one of which got done, but then things kind of went to shit.
She kept calling and being put on hold or told someone would call, but no one did. Finally last night she got a call from her neurologist who scheduled an appointment for next week. Great! He talked through some stuff with her, they want to do another lumbar puncture, etc etc. That's all good. Today? Got another call from a secretary, this time cancelling the appointment. When she asked to speak to the doctor, all of a sudden he doesn't work there. On top of all that, the STI company we use is jerking us around trying to get her paid so we've been struggling on one income and basically just not paying a bunch of bills.
I'm going crazy. She is too. I know the world is on fire because of coronavirus, but is there anything we can really do at this point? Any resources worth reaching out to?
You are likely going to be pushed off for another few months unless this is an emergency, unfortunately.
You send me a stupidly high no-insurance bill, I call you back correcting you and give you my insurance information. So you apologize and then do it again, so I have to call back and correct you again. Then you do it a third time! This is not difficult; it wasn't even the only thing I was billed for from that day, and everyone else knew I had insurance and ran it by them first. Good lord how are ya'll this incompetent?
Fuck, just get it together.
On the downside, the injections are about $30k/year. And because of the cost insurance companies almost always fight it. So that'll be fun. Also no idea what our copay is going to end up being but probably a fucking fortune. Yay.
For me, take at home injections were under the prescription portion of my coverage. In office infusions get billed as a specialist visit, though drug makers often have cost reduction programs with patients.
Obviously depends on the structure of your plan but if you're on a deductible before copay plan I'd fully expect to hit the deductible unless the drug makers have subsidy programs (even then, you'll hit it but they might pay part of it). I don't know where she gets her insurance from but it might be worth reaching out to the involved HR. They might not know but if the source uses an insurance broker a lot of them will get involved to help you understand what's going on and will have contacts at the insurance company directly.
@tynic this is the best humblebrag I've ever seen, and I mean that in a completely good way. It made me smile :biggrin:
I typed "I am not a doctor" in all sincerity and then right before I hit post I went 'oh, ... wait'
On the other hand, those steroids they dumped in seem to be making my bum knee feel GREAT this morning.
I originally read the correction as "mad professional" because I'm tired. My first thought was "that's a weird way of saying mad scientist" and my second thought was "wait she's saying she's not a mad scientist?"
true comic book level villains never admit it openly but you can always tell by their hair
Yeah but think of the eulogy
He has a doctorate in literature, not writing.
He's read good books.
He hasn't written them.
"Socialism will lead to death panels, though!"
I do really encourage you or your wife to reach out to the Docs office and find out who handles this. Any doc who has to deal with prescribing the kind of drugs like this will basically have at least a person whose job is dealing with insurance companies and forcing them to give folks what they paid for.
They have been fighting for a couple weeks, appealed a couple times. We're exploring options now, which might just be engaging our legal benefits from work to fight our medical benefits and let capitalism break itself.
Oh look, another infusion and another reaction. This time they prepped me with Benadryl and solumedrol first. Half an hour in I'm watching netflix with some noise canceling headphones on and I hear a weird whistling sound. Figured out that was me breathing so that was not a cool experience.
Infusion doc isn't telling me to not come back yet but is going to double the dose of the preparatory meds next time. Really hoping this isn't a long term thing as I've actually been feeling like things have been managed pretty well with my current treatment regiment.
Histamine reactions are one of those things that can get worse with exposure, but hopefully they can find a drug regime to balance it out.
It wouldn't surprise me if Remicade can trigger those, it's an immunosuppressant right? Might even be just related to the infusion itself and not the actual medication.
I remember that hiccups are a fairly common reaction with steroid injections, usually one of the precursors of a potential serious reaction with them, weird.
On the one hand, it’s not great and quite annoying and I should probably see a doctor. OTOH, internet sleuthing has suggested that there’s usually no recommended treatment options unless theres also a larger underlying medical issue, which I don’t think is the case. So I’ve been putting off seeing anyone (because who likes drs appointments, and I think they’d just tell me to move more slowly when changing altitude and watch out for any other physical symptoms).
Anyway does anything slightly raise your blood pressure without being hella dangerous
Maybe I could eat more fruit? Fruit is good.
Are you on any medication that could be exacerbating the issue? (Just something to think about, im not asking what you are on)
Also maybe drink less alcohol and eat more salt
-Indiana Solo, runner of blades
You're consistently blacking out just from standing up? Make a doctor appointment immediately.
Other stuff doesn't really fit - I don't think any of my meds have low blood pressure side effects, I only take corticosteroids for asthma. And my alcohol consumption has plummeted to basically zero since COVID because I only drink socially, so I don't think that's it. Salt, I could probably increase if I had to but I don't have a low sodium diet or anything.
Not like, fainting, my vision just goes black for a few seconds, and I usually have to lean on something for a bit until it comes back and I don't feel dizzy. It's happened my whole life, so for a long time I assumed that's what people meant when they talked about a "head rush". It's definitely gotten more frequent just recently though.
No no, I understood you the first time. That is more than enough cause for concern. Considering it has worsened significantly in a short period of time, you are into "talk to a doctor" territory.
Best solution is lots of fluids and salt. Lots and lots of salt.
Ok I will take the internets advice on this one