Guide for IV saline fluids?

[kisekis]

Could someone help how much you should get a week for iv saline? I been reading about it but never tried regularly. I thought only try 1 bag once? But i think i remember i couldnt really notice improvements. I got it years ago cause my bp is a little low and after its still quite low too. Maybe only a slight change.

I try to find an info but still isnt clear.

Such as how many bag/litre per week? How often/how many days per week?

is it just the regular saline they usually infuse you through your arms, veins when you diarrhea?

If you have to do it for long i think its hard if you have to keep going to hospital and getting infusion almost everyday for hours. Wouldnt that caused trouble to the veins?

Otherwise you require to buy the device/port at home?

 

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[Pistol]

In certain treatment refractory patients they do IV saline - my specialist gave me an order twice for 1 l NSS over 2 hours weekly. It did not help me - personally - all that much but 16 - 24 hours of fluids at 125 ml/hr has shown great improvement. Currently I have an order for 1 l LR over 6-8 hrs. 

[kisekis]

19 hours ago, Pistol said:

In certain treatment refractory patients they do IV saline - my specialist gave me an order twice for 1 l NSS over 2 hours weekly. It did not help me - personally - all that much but 16 - 24 hours of fluids at 125 ml/hr has shown great improvement. Currently I have an order for 1 l LR over 6-8 hrs. 

Thanks for replyinf

 

So must get infusion all day? 😮

Seems hard for me cause cant stay at hospital all day/for long and so often

 

You said the first one didnt help you but its the normal standard recommended instruction for pots?

Whats the general average total litre of saline per day? And how often/how many days have to get per week?

 

[Pistol]

@kisekis - there really is no standard for IV fluids that I know of. My specialist ordered 1 l over 2 hours once a week. That is beneficial for many, just in my case it was not enough. There are members on this forum that receive IV fluids and all the orders are different. One member gets weekly infusions, another member gets them every other day and one member even gets them daily. In m case I now get weekly infusions. 

[kisekis]

2 hours ago, Pistol said:

@kisekis - there really is no standard for IV fluids that I know of. My specialist ordered 1 l over 2 hours once a week. That is beneficial for many, just in my case it was not enough. There are members on this forum that receive IV fluids and all the orders are different. One member gets weekly infusions, another member gets them every other day and one member even gets them daily. In m case I now get weekly infusions. 

I know. everyone is different. maybe it depends on the condition, how severe it is, hows the blood volume(unfortunately cant test for it)

I just wonder what dosage usually prescribe that i can try to see if i can improve with it. But it seems tricky.

Didnt fluids get off the system in only some hours? If one get saline only a day a week wouldnt the remaining 5 days they revert back?

I notice first you said 1 L over 2 hours and then 1 L over 6-8 hours. Doesnt that mean you still get 1L per day? (Sorry if i dont get this )

[Bluebonnet08]

Right now I get Lactated Ringers every 5 days.  I get 500ML, run over 1-1.5 hours.  I go to a Hydration Clinic. (most big cities have them)... sometimes they are called "Hangover Clinics", but anyone can go.  The only I go to has other POTsies and people suffering from other illnesses. 

  I've experimented with the amount and how often to go.  Ideally I feel best when I go every 4 days, but I am worried about my veins.  They can use different veins in different places like your wrists.  This has been the biggest treatment to make a difference in my life.  I feel bad for anyone who is not getting this .  I suffered for about 10 years without knowing about this and it was horrible. This is known as a standard treatment for POTS by the professionals in the field, so it's very upsetting when doctors won't write this basic script.  

[Guest ANCY]

I do saline infusions, been a little over a year now. Started with twice a week, 1 liter over an hour. I noticed improvement the day of and somewhat the day after. The goal was slightly different as we were trying to find a way for me to progress in Physical therapy and so did infusions on the same day as PT. After several months and seeing the benefit I had a port placed because I'm not an easy stick. After that we were able to switch to home infusions and switched from running over 1 hour to 4.5 hours. since we had been doing Tuesday Thursday for infusions and were seeing si much benefit, my nurse suggested adding Wednesday since my port would already be accessed. Back in May I started having more trouble with anemia and keeping my tube feeds running and started a downhill spiral. During the last several months I've been doing 1 liter a day run over 24 hours. Honestly been my lifeline without it i would have had to spend MORE time in the hospital. 

I think it's different for everyone and really needs to have a Dr who knows what they're doing. My heart has been under a LOT of stress lately, multiple pulmonary embolism, frequent need for transfusion due to blood loss, among other things. This has brought about some rythym changes that are exacerbated by hypovolemia or dehydration. This has shown me just how much the fluids are actually helping my body cope. 

[MomtoGiuliana]

My doctor ordered 2 bags of saline 3X a week when I was very sick with a severe relapse earlier this year.  I was able to get them at infusion center at the hospital.  It definitely got me much more stable.  As I recovered this was reduced to 1 bag and then 2X a week.  My insurance covered all of this fortunately.  There were several other POTS patients also getting similar treatment at the same time I was.

[Andy T]

Interesting reading all you guys posts on IV fluids. Over here in the UK it seems much more difficult to get IV for POTS.

I’ve recently started twice weekly (for around a month now) and get my central line in two days. Anybody in the UK had trouble/success accessing IV as a treatment option? 

 

[bombsh3ll]

On 10/23/2018 at 8:36 PM, Andy T said:

Interesting reading all you guys posts on IV fluids. Over here in the UK it seems much more difficult to get IV for POTS.

I’ve recently started twice weekly (for around a month now) and get my central line in two days. Anybody in the UK had trouble/success accessing IV as a treatment option? 

 

How on earth and where did you get a central line agreed in the UK? NHS or private I would be really grateful if you could share details.

B x

[Andy T]

It wasn’t easy but just keep pushing!

ive had POTS since 2012 but had lots of problems this year probably worse with the hot summer. In June my BP had a low of 55/29 with also loss off blood flow to the kidney. Had seven admissions since June each time dehydrated & low kidney function (I drink 3-5 litres per day). Each time I recover with IV. I was discharged from my last admission with a plan for my GP to do weekly bloods & fluids as required, However, I soon found out our local health trust had no facility to supply fluids out of hospital. In the end I tracked down & emailed the local “community IV team” which is run by the district nurses to provide antibiotics & treatments mainly to cancer patients. They arranged a meeting at the local hospital with a consultant to over see things & another doctor. It was all agreed in minutes & they gave me fluids on the spot after the meeting (dehydrated again). I get the fluids at a local NHS health centre twice weekly (I’m having them as I type this).

Central line goes in this afternoon.

hope this helps