Hydroxychloroquine (Plaquenil) and POTS

[Sarah Tee]

@Caterpilly, I really hope the Plaquenil helps you.

So far, all I can find on biologics is a handful of case studies that describe people with POTS or SFN receiving a biologic for another condition and finding that it improved their autonomic symptoms.

Here’s one written by Dr Blair Grubb in which the patient receives adalimumab (Humira) for ankylosing spondylitis and it also helps with her POTS symptoms:

https://www.heartrhythmcasereports.com/article/S2214-0271(20)30241-4/fulltext

I believe Dr Tae Chung at Johns Hopkins is also a passionate advocate for immune therapies for POTS patients who have not responded to anything else.

So there are a few experts out there pushing, but it’s oh so slow.

[Caterpilly]

Thank you! Yeah, there’s only a few of these studies and they’re all very small. Some of the antibody data coming out in the recent years seemed hopeful, but still nothing is really moving with it yet. But I’m hoping after seeing some of the stuff out there about the doctors who do think auto immune issues play a big part, that eventually this will lead to some practical strategies for us all.
 

Right now I’m still a bit scared to start the plaquenil, so I’m using a lot of these findings as a peptalk and validation to try despite the risks lol. It was always so weird to me why they start with IVIG but there must be a reason. I wish they would tell us why! And I wish some of these easier to access things like the plaquenil could make a difference too. My rheum also wants to try me acthar injections. It’s kind of like a steroid alternative… In a way…a hormone that causes your body to produce more natural steroids. Still can have similar side effects, but apparently at a lesser rate/intensity  than regular steroids. I still have to retry the oral steroid trial. I have such trouble tolerating the medications that I didn’t do great first time around, but I’m going to retry again just to see if it tells us anything. Not sure how high a dose Id have to get to to know if it works, but going to try 35mg, maybe 40 of prednisone, but split into 2x day doses instead of all at once. 

[Sarah Tee]

@Caterpilly, I hope it all goes well.

I felt great on prednisone but rotten on hydrocortisone. It seems like people can sometimes tolerate a different steroid even after a bad reaction to another one.

I had a sort of accidental trial. I was give five days of prednisone tablets for an itching attack. It settled down the itching, but also made my orthostatic symptoms better. And then, after the five days, I continued to feel benefits until gradually returning to baseline after about 3 months.

I just started Plaquenil last week. So far, it’s going okay. Have felt a bit off when increasing the dose, but no worse than other off days I’ve had while unwell from non-medication causes.

I’m only up to 100mg at this point, and need to get to 200mg. Not looking forward to the ~3 month wait to see whether it is effective!

[Caterpilly]

Oh that’s interesting about the different steroid reactions. Good to know. Also interesting how you kinda accidentally had it help your orthostatic symptoms.
I might start my trial this weekend… What dosage did you take of prednisone that made you feel better?

My one doctor was thinking I need to push higher with my dosage to know if it would work for me or not, but since I have trouble tolerating things really didn’t want to go above 35/40… But I’m not even sure if I’ll tolerate that. I used to do OK with a Medrol pack, but this is higher.

I probably will wait to start the plaquenil till after I trial the steroids… It’s so nerve-racking, because so many mixed experiences, I hate that the side effects are so bad, but just hoping nothing long-term! I hope you do well with it. And at a minimum no bad side effects that last!
 

 If you do find benefits with just 200 let me know. If I’m brave, I might start it around the beginning of February. 

[Sarah Tee]

@Caterpilly, my prednisone was 25mg per day, which was given to settle an itching/hayfever attack that I coukdn’t get under control by other means. I hope the prednisone doesn’t make you feel too awful. If it does, maybe you can try hydrocortisone instead.

(I should mention that I don’t have POTS, but something in the “POTS family” that has been described as probably autoimmune by the researcher who discovered it. He’s not my doctor, I just read his research.)

I think it’s a good idea to start medications separately when possible.

I’m writing a separate thread called ”The Plaquenil Diaries” to document my progress in case it is of help to anyone.

[Sarah Tee]

Found a trial of a biologic called efgartigimod in post-COVID POTS patients:

https://clinicaltrials.gov/study/NCT05633407

Efgartigimod, also known as Vyvgart, is an antibody fragment that binds to the neonatal Fc receptor (FcRn), preventing FcRn from recycling immunoglobulin G (IgG) back into the blood. The medication causes a reduction in overall levels of IgG, including the abnormal AChR antibodies that are present in myasthenia gravis.

(Sorry, I can only copy and paste!)

It was developed to treat myasthenia gravis.

The study, which is being conducted by the manufacturer of the drug, states:

“Efgartigimod may be a viable treatment option for patients diagnosed with post-COVID-19 POTS because it has been shown to reduce IgG levels, including IgG autoantibodies, which may underlie some of the autonomic disease manifestations in these patients.”

[Caterpilly]

Oh wow, you found relief on 25 mg. Interesting. That’s good you didn’t need a higher dose. 
as for your condition, did the researcher say why he thinks it’s probably auto immune? I’m just curious if there were certain anybody markers or if it’s just a hunch based on lack of responsiveness to other treatments.

I have not yet had any antibodies come up positive for like all the tons of things tested, but other signs that seem autoimmune. My IgG and ACHR antibodies were ok too. I really had high hopes for Mestinon because at the time it was the only drug it tolerated, and I stayed on it for a year and worked up to the highest dose, but it did nothing to help me. In later years when I tried to retrial it, I seemed to be more sensitive to the Gastro effects, but I don’t think it really was going to help me. 
 

I can’t remember if I read this earlier in the thread, or if I’m confusing you with someone else, is your condition the one that’s related to low cerebral blood flow? I wonder if that is part of my issues… I am getting that new STAT ear device to see if that make sense of anything, but that probably won’t arrive till April or later

[Sarah Tee]

@Caterpilly, yes, my diagnosis is OCHOS, which is low cerebral blood flow with no other problems (no tachycardia and no blood pressure changes on standing).

I do hope the Stat gadget will be helpful for you. I would love one, but I live in Australia, so I’ll have to wait and see whether they release it here.

Dr Peter Novak is the researcher. I don’t think he has found any antibodies for OCHOS – I think he is getting clues from people’s history that point towards immune involvement. He did try IVIg successfully on one patient who had OCHOS plus a lot of other issues, but I think the person was so unwell that they just decided to try IVIg knowing it was likely to help in general. (No mention of antibodies in the case study article, but I think it was written in a bit of a rush.)

https://www.sciencedirect.com/science/article/pii/S2405650220300551?via%3Dihub

In my case, I worked out that my symptoms were autoimmune based on partial remission after steroids, feeling better after IV albumin (it has transient immune modulating properties), and having another autoimmune disease start at the same time as my OI symptoms (ulcerative colitis).

I do respond to vasodilators, such as calcium channel blockers, but am yet to find one I can tolerate at a sufficient dose. Right now I take a low dose that gets me out of bed at least. Hoping the two-pronged approach will work: a) Plaquenil reducing the antibodies or whatever is abnormally constricting my cerebral arteries, and b) vasodilators to reduce the constriction.

(Some people with OCHOS have abnormal cerebral vasoconstriction, which actively stops the blood getting to the head. Others have low blood volume and blood pooling in the lower body, so enough blood just doesn’t make it to the head. I’m the first camp.)

Sorry to hear mestinon didn’t help. It can be a long slog trying to find something that works.

[Caterpilly]

Yeah, it stinks that they’re not able to ship the stat device everywhere yet. But hopefully that will eventually happen once it’s perfected. 

Oh, that’s interesting your form of low cerebral blood flow is caused by vasoconstriction. I didn’t realize that it wasn’t just low blood volume or blood pooling. What are your most prominent symptoms? Do you still feel faint and lightheaded all the time? Do you get a lot of headaches? Also, do you ever feel faint or light head lying down and after waking from sleep?
 

This symptom puzzles me the most because one is supposed to feel better lying down, but I’ve been feeling so faint, weak, even lying, especially when I wake up. I always wake up feeling drugged like I’ve had anesthesia, very lightheaded and dizzy, but now the added faintness and shakiness is. bizarre. this is why I’m curious if the stat device will tell me if I have low blood flow even when I’m lying or sitting. For me, I still think I get orthostatic symptoms even sitting, I feel so drained.
 

i hope Dr Novaks research can start to make some headway for us all. I didn’t even know about those two new conditions he discovered until recently. My autonomic doctor in NYC never mentions anything. I’m in New Jersey but I’m homebound and disabled so I can’t travel far and having trouble just leaving the house even once every few months this year. It’s gotten so bad. I’ve been sick for 29 years now, only getting worse, intolerant of most meds or the ones I tolerate don’t work. So I literally have no treatments to take.  So it’s just so challenging and scary cause it feels like I’ve run out of time. And being next to NYC you think there would be studies available or good researchers like Dr. Novak but there’s not. I’ve had so many doctors say try IVIG at this point, but no one actually can do it. I have Medicare and you need very specific diagnoses to get it here. None of the doctors who actually can prescribe it will do it since my case is still just a mystery. POTS, small fiber neuropathy, gastroparesis, mitochondrial dysfunction, etc isn’t enough.  I wish I could see Dr Novak but Id never handle or recover from the trip at this point 😞

did you have to see him here in America to get diagnosed? Was he able to TeleMed with you or were you able to get your diagnosis locally? How do they see the vasoconstriction part? Or low blood flow? Just curious if it’s only a special test done at research institutions or if it’s something you can get locally. 

[MaineDoug]

@Caterpilly , @Sarah Tee,

😂 I have to laugh reading your posts above re: biologics!

I came to Dysautonomia/POTS from Rheumatoid Arthritis. My Biologics have been on hold for 1.5 years because of concerns which I now realize are Dysautonomic! As soon as we can get my GI tract, Hepatic Steatosis, and Pancreatic Insufficiency under control I’ll be able to get back on my Humira! 🤪

I never thought of the RA as a gift but it does get me access to ALL KINDS of meds! 🫣 AND, as a Seropositive RA’er no one ever questions my “sickness”.

As for the steroids I’ll just say, keep dosage as low as possible and duration as short as possible! 
 

Best wishes!

[Caterpilly]

@MaineDoug ha, I didn’t realize you could  “@“ people on here in order to reply lol so hope I’m doing this right. 
thanks for the info. Sorry your RA seems to be causing you dysautonomia now. Autoimmune issues definitely are one of the underlying causes. As much as those conditions and treatments can suck and be dangerous, you are right that by at least being by diagnosed, and Seropositive, you’ll be taken seriously, and hopefully can have more access to treatments that could maybe eventually help the dysautonomia too. 
 

my dad has two sero negative autoimmune conditions, but his symptoms were weird enough where they were able to diagnose him, but he still was undiagnosed for a long time. I have all kinds of weird symptoms, including a nasal sore for one year! But still seronegative so pretty stuck and held back from accessing treatments. So yea, ha while not the “gift” you wanted 😆, if you have it, it’s better to know, and it can have its advantages 

[RecipeForDisaster]

9 hours ago, Caterpilly said:

Yeah, it stinks that they’re not able to ship the stat device everywhere yet. But hopefully that will eventually happen once it’s perfected. 

Oh, that’s interesting your form of low cerebral blood flow is caused by vasoconstriction. I didn’t realize that it wasn’t just low blood volume or blood pooling. What are your most prominent symptoms? Do you still feel faint and lightheaded all the time? Do you get a lot of headaches? Also, do you ever feel faint or light head lying down and after waking from sleep?
 

This symptom puzzles me the most because one is supposed to feel better lying down, but I’ve been feeling so faint, weak, even lying, especially when I wake up. I always wake up feeling drugged like I’ve had anesthesia, very lightheaded and dizzy, but now the added faintness and shakiness is. bizarre. this is why I’m curious if the stat device will tell me if I have low blood flow even when I’m lying or sitting. For me, I still think I get orthostatic symptoms even sitting, I feel so drained.
 

i hope Dr Novaks research can start to make some headway for us all. I didn’t even know about those two new conditions he discovered until recently. My autonomic doctor in NYC never mentions anything. I’m in New Jersey but I’m homebound and disabled so I can’t travel far and having trouble just leaving the house even once every few months this year. It’s gotten so bad. I’ve been sick for 29 years now, only getting worse, intolerant of most meds or the ones I tolerate don’t work. So I literally have no treatments to take.  So it’s just so challenging and scary cause it feels like I’ve run out of time. And being next to NYC you think there would be studies available or good researchers like Dr. Novak but there’s not. I’ve had so many doctors say try IVIG at this point, but no one actually can do it. I have Medicare and you need very specific diagnoses to get it here. None of the doctors who actually can prescribe it will do it since my case is still just a mystery. POTS, small fiber neuropathy, gastroparesis, mitochondrial dysfunction, etc isn’t enough.  I wish I could see Dr Novak but Id never handle or recover from the trip at this point 😞

did you have to see him here in America to get diagnosed? Was he able to TeleMed with you or were you able to get your diagnosis locally? How do they see the vasoconstriction part? Or low blood flow? Just curious if it’s only a special test done at research institutions or if it’s something you can get locally. 

I see Dr. Novak. He doesn’t see patients remotely outside Massachusetts - and very rarely even then. I also think he said he was not taking new patients. He diagnoses this with cerebral Doppler.

[Caterpilly]

@RecipeForDisaster

oh ok, thank you. Bummer! But good to know. Has he been able to identify your underlying cause? I’m curious what battery of tests he orders and if I already had everything done anyway. Well, except for the Doppler thing, I don’t know if they do that anywhere else around here, haven’t had that. 

it stinks because he sounds like the type of researcher I would need to be around to maybe still have any hope for my case after almost 30 years…especially If he sometimes can experiment with different things like IVIG , etc. Even being nearer to NYC, no one good with this stuff is out there I wish someone would just take interest and research me because I feel like there’s a lot to learn there lol I’m like my own longitudinal study 😂.  

[Sarah Tee]

@Caterpilly, maybe you could go on a waiting list to see Dr Novak. Even when you are ill and travel seems impossible, you never know how things will be down the line.

He’s written a couple of articles on testing, which you can find on PubMed, and the department has something called “The Brigham Protocol”, which sounds like a 1960s spy novel.

It’s discussed towards the end of this article:

https://www.brighamhealthonamission.org/2019/06/03/expanded-autonomic-testing-helps-to-pinpoint-causes-of-orthostatic-intolerance

It’s basically all your usual autonomic testing as done at a specialist lab with cerebral blood flow velocity (measured with Doppler ultrasound) and end-tidal CO2 added on to the tilt table testing.

I don’t know that he is particularly into the immune side of things, but he would have colleagues to help, I am sure.

Dr Tae Chung at Johns Hopkins and Dr Blair Grubb at the University of Toledo seem to be involved a lot in immune aspects. Dr Svetlana Blitshteyn also has an interest in that area, although she doesn’t take insurance and writes up a treatment plan that you need a local specialist to follow. (She does do telehealth.)

I’m sure other folks can chime in on who or where might be good.

[Sarah Tee]

@MaineDoug, I hope you can get back to Humira soon.

[Sarah Tee]

@Caterpilly, my symptoms are not exactly linked to being upright. Mine run according to the time of day, and once they start, lying down doesn’t make a big difference. I do feel worse if I stand still while symptomatic, of course. (No headaches.)

There is research into autoimmune diseases showing a daily pattern, so I just figure that’s what is happening with me.

There has been some research on patients with chronic fatigue syndrome who have low cerebral blood flow showing that it did not resolve immediately after they were lowered down to flat again from tilt table testing. So although being upright is important, it obviously isn’t the only factor.

I think many folks here feel unwell on waking or wake up during the night feeling unwell. I go through phases of feeling shocking when I wake up, or feeling okay until I eat.

***

Change of topic:

Have you ever managed to get IV saline, and did it help?

[RecipeForDisaster]

6 hours ago, Caterpilly said:

@RecipeForDisaster

oh ok, thank you. Bummer! But good to know. Has he been able to identify your underlying cause? I’m curious what battery of tests he orders and if I already had everything done anyway. Well, except for the Doppler thing, I don’t know if they do that anywhere else around here, haven’t had that. 

it stinks because he sounds like the type of researcher I would need to be around to maybe still have any hope for my case after almost 30 years…especially If he sometimes can experiment with different things like IVIG , etc. Even being nearer to NYC, no one good with this stuff is out there I wish someone would just take interest and research me because I feel like there’s a lot to learn there lol I’m like my own longitudinal study 😂.  

Nope, he has theories and has diagnosed me with HYCH, but it hasn’t changed my management. He isn’t the one who ordered IVIG nor IV fluids. He has tried plenty of other meds - some of which have been helpful. I still have hope that he will figure me out.

 

He does a battery of autonomic testing, including SFN biopsies, QSART, TTT, and cranial Doppler, plus Washington University lab panels.

[RecipeForDisaster]

1 hour ago, Sarah Tee said:

@Caterpilly, my symptoms are not exactly linked to being upright. Mine run according to the time of day, and once they start, lying down doesn’t make a big difference. I do feel worse if I stand still while symptomatic, of course. (No headaches.)

There is research into autoimmune diseases showing a daily pattern, so I just figure that’s what is happening with me.

There has been some research on patients with chronic fatigue syndrome who have low cerebral blood flow showing that it did not resolve immediately after they were lowered down to flat again from tilt table testing. So although being upright is important, it obviously isn’t the only factor.

I think many folks here feel unwell on waking or wake up during the night feeling unwell. I go through phases of feeling shocking when I wake up, or feeling okay until I eat.

***

Change of topic:

Have you ever managed to get IV saline, and did it help?

I don’t feel perfect when I lay down, either. I feel awful when I’m trying to sleep, and when I have eaten, and sometimes I don’t get better when I lay down during a crash. I can still have BPs in the low 70s while flat.

[MaineDoug]

4 hours ago, Sarah Tee said:

 

Change of topic:

Have you ever managed to get IV saline, and did it help?

@Sarah Tee,

 have had IV saline during flares. It did help, it seemed to give my GI tract a break from absorbing all the fluids and let it recover. 
 

Unfortunately, my veins have been damaged, scarred from years of IV RA meds that venous access became an issue. Another game of “whack-a-mole”!

[Caterpilly]

6 hours ago, Sarah Tee said:

@Caterpilly, maybe you could go on a waiting list to see Dr Novak. Even when you are ill and travel seems impossible, you never know how things will be down the line.

He’s written a couple of articles on testing, which you can find on PubMed, and the department has something called “The Brigham Protocol”, which sounds like a 1960s spy novel.

It’s discussed towards the end of this article:

https://www.brighamhealthonamission.org/2019/06/03/expanded-autonomic-testing-helps-to-pinpoint-causes-of-orthostatic-intolerance

It’s basically all your usual autonomic testing as done at a specialist lab with cerebral blood flow velocity (measured with Doppler ultrasound) and end-tidal CO2 added on to the tilt table testing.

I don’t know that he is particularly into the immune side of things, but he would have colleagues to help, I am sure.

Dr Tae Chung at Johns Hopkins and Dr Blair Grubb at the University of Toledo seem to be involved a lot in immune aspects. Dr Svetlana Blitshteyn also has an interest in that area, although she doesn’t take insurance and writes up a treatment plan that you need a local specialist to follow. (She does do telehealth.)

I’m sure other folks can chime in on who or where might be good.

Thanks, I did take the hit and  the $500 from my savings for a TeleMed with Dr Bltshteyn since I was so desperate. But I was really disappointed. She said not to worry, and that I could ask all my questions, but all she did was take time taking my history, which I specifically told her I did not want to waste all the time doing. Like, of course, I still understand explaining things, but I  gave her all my records and a summarized history ahead of time

and would’ve went through it quickly, but it was completely useless. She just took my history, regurgitated it back, not even that accurately in a report and gave basic treatments that I already tried or knew about and didn’t answer the specific questions I was looking to her expertise for. I was so upset. 

 

[Caterpilly]

6 hours ago, Sarah Tee said:

@Caterpilly, my symptoms are not exactly linked to being upright. Mine run according to the time of day, and once they start, lying down doesn’t make a big difference. I do feel worse if I stand still while symptomatic, of course. (No headaches.)

There is research into autoimmune diseases showing a daily pattern, so I just figure that’s what is happening with me.

There has been some research on patients with chronic fatigue syndrome who have low cerebral blood flow showing that it did not resolve immediately after they were lowered down to flat again from tilt table testing. So although being upright is important, it obviously isn’t the only factor.

I think many folks here feel unwell on waking or wake up during the night feeling unwell. I go through phases of feeling shocking when I wake up, or feeling okay until I eat.

***

Change of topic:

Have you ever managed to get IV saline, and did it help?

Oh, interesting about the time of day patterns and possible auto immune relation. Also, yeah, I probably have CFS too… That’s always what they said as a kid but I figured they said that because I just didn’t test positive for anything else, but I hate accepting that diagnosis because it’s such a dead end sadly. It’s a shame how research hasn’t really moved or treatments in decades and there’s still so much dismissiveness. But I get horrible posted exertional malaise from the littlest things and never recover so it’s probably a big part of it. and exercise, even going low and slow, anything done consistently always makes me worse and I lose functioning, long-term or cause permanent chronic pain areas so it’s really messed up.

and yes, funny you mentioned about the IV Saline, because as part of my year of expensive last ditch efforts, because everything feels pretty close to over at this point after almost 3 decades… The only way I could access them was by paying for those expensive mobile IV places. I tried about seven IVs I think in total, saline plus various vitamins and supplements, I also have mitochondrial dysfunction, so I didn’t know if it would help from that perspective, either… And gastroparesis… but I really couldn’t tell if it was doing much. Sometimes a few days after the IV I might’ve been slightly less faint and a little more “pushable” but it didn’t really seem consistent so I don’t think it really did much sadly. Other people say it works wonders though, so you never know.

[Caterpilly]

@RecipeForDisaster

OK, thanks, good to know how you can still be symptomatic lying down as well. Some doctors make you feel like you should feel miraculous and that’s not the case and I hope Dr. Novak figures you out as well! and OK he was not the one who did the IVIG, that is so hard to get. I don’t know anyone by me that would do it experimentally. But that’s good He was at least trying other things with you. I still have found nothing after 29 years it’s just beyond devastating.  if I could at least tolerate medicines better maybe I would’ve hit on some thing, but not tolerating a lot of meds makes it more challenging too . There’s not too many options for us as it is but my body like rejects everything. And then the things it does tolerate just don’t work. 🤷‍♀️

[RecipeForDisaster]

4 hours ago, Caterpilly said:

Oh, interesting about the time of day patterns and possible auto immune relation. Also, yeah, I probably have CFS too… That’s always what they said as a kid but I figured they said that because I just didn’t test positive for anything else, but I hate accepting that diagnosis because it’s such a dead end sadly. It’s a shame how research hasn’t really moved or treatments in decades and there’s still so much dismissiveness. But I get horrible posted exertional malaise from the littlest things and never recover so it’s probably a big part of it. and exercise, even going low and slow, anything done consistently always makes me worse and I lose functioning, long-term or cause permanent chronic pain areas so it’s really messed up.

and yes, funny you mentioned about the IV Saline, because as part of my year of expensive last ditch efforts, because everything feels pretty close to over at this point after almost 3 decades… The only way I could access them was by paying for those expensive mobile IV places. I tried about seven IVs I think in total, saline plus various vitamins and supplements, I also have mitochondrial dysfunction, so I didn’t know if it would help from that perspective, either… And gastroparesis… but I really couldn’t tell if it was doing much. Sometimes a few days after the IV I might’ve been slightly less faint and a little more “pushable” but it didn’t really seem consistent so I don’t think it really did much sadly. Other people say it works wonders though, so you never know.

My bet is you had less effects from IV fluids because they ran too fast(ant a normal rate like over 3-4 hours )and/or you didn’t get enough. I need 2 liters run very slowly. I have it at 80mL per hour right now.

[RecipeForDisaster]

4 hours ago, Caterpilly said:

@RecipeForDisaster

OK, thanks, good to know how you can still be symptomatic lying down as well. Some doctors make you feel like you should feel miraculous and that’s not the case and I hope Dr. Novak figures you out as well! and OK he was not the one who did the IVIG, that is so hard to get. I don’t know anyone by me that would do it experimentally. But that’s good He was at least trying other things with you. I still have found nothing after 29 years it’s just beyond devastating.  if I could at least tolerate medicines better maybe I would’ve hit on some thing, but not tolerating a lot of meds makes it more challenging too . There’s not too many options for us as it is but my body like rejects everything. And then the things it does tolerate just don’t work. 🤷‍♀️

I heard that Dr Blair Grubb may be doing televisits again. I’d try for that for sure. 
My neuromuscular specialist at home orders my IVIG, because it’s technically for autoimmune SFN, which he diagnosed. I do like that I don’t have to reach him in Boston. It would be so great if everyone could see Dr Novak easily - he really is a pioneer. Even getting a weird diagnosis of HYCH was something other than repeatedly being told I don’t have POTS: I knew!

Don’t give up - there are so many options out there! I have a whole room of devices like sequential compression, transdermal vagal stimulation, lots of compression gear… plus a giant box of meds, some for every day, and some to bail me out at bad times.

[Caterpilly]

7 hours ago, RecipeForDisaster said:

My bet is you had less effects from IV fluids because they ran too fast(ant a normal rate like over 3-4 hours )and/or you didn’t get enough. I need 2 liters run very slowly. I have it at 80mL per hour right now.

Hmm.. yeah that’s interesting and might be true. These places like to push it fast in like an hour or maybe an hour and a half and I was getting just 1 L. My veins suck though, so between that and finances, my experiment had to end anyway.
 

 I think they got ruined after chemo many years back and now just keep getting weaker as I get older, so I was running out of viable veins and a picc and port would not be a good idea for me, midline would be lesser of evils but still not good. During chemo they broke the picc line guide wire in my arm and the metal got lost and then they found it a crumpled up ball inside. It sliced through my vein, attached to my nerve, and I had to get surgery to remove it later on.  now I have permanent sutures in there,  it was a whole mess.  And it hurt the whole time. I had it . so unless I really needed this and it worked, ha I’m not jumping for any lines. Plus, it’s just too expensive since my insurance won’t cover it. So I was hoping to just trial it to see if it could get me back to the baseline that I lost the last year or two.  Or if it’s something I could use to get me out of crashes… But not sure. And Me being so sick and homebound now the midline would be a lot to deal with and I don’t have anyone to help take care of me. But… all that said, if I had to revisit it later, and I was giving myself the infusions at home through a midline… Then I guess I could adjust the rate and amount myself.