For all of you who get infusions...

[Knellie]

I have heard mentioned on this forum many times people getting infusions monthly/weekly/every 2 weeks, etc. I was just wondering what these are for? Are they just electrolytes? And how would I get my doctor to prescribe that for me? Do you get them at an infusion place or do you have someone come to your house and do it for you? 

[Pistol]

Hello @Knellie - I get Lactated Ringers Solution up to 3 times a week through a port at home. LR is an electrolyte solution that does more than just fluid replacement like Saline solution. Saline will give you a temporary boost that keeps the vessels full to keep them tight, prevent them from dilating too much. LR does more than that, it actually stays in the vessels longer b/c it essentially makes your blood "thicker". As a comparison it is a difference between tea and milk. 

Prior to the port I used to be in the ER every 6-8 weeks for syncope, seizures, high HR and high BP from POTS. They would admit me for 24 hours of IV Saline. I would crawl in, unable to stand or have a straight thought, and leave skipping an hopping. You can actually SEE the effectiveness of fluids while they are running in: Vital signs normalize and my skin color returns to pink, I can talk and think, i can start being upright and walk again. But the results were always a temporary fix. Eventually, when a hopitalist refused to give me fluids b/c he did not believe in POTS and said if I can drink I don;t need them ( which led to 3 unnecessary seizures ) my PCP finally agreed to the port. I have never looked back. I had my port for 2 1/2 years and am much, much more stable!!!!

On 5/16/2021 at 10:31 PM, Knellie said:

And how would I get my doctor to prescribe that for me?

My autonomic specialist ( who is against ports and permanent fluids for the treatment of POTS, but uses it for temporary symptoms relief ) used to give me an order for 2 liters of Saline weekly for 1 month during flares. I would go to an outpatient infusion center for those, some Urgent care centers can do it too. My 2 sisters, who also have POTS, get Fluids as needed and it helps them from becoming bed ridden. Strangely in us ( we have HPOTS ) IV fluids bring our BP DOWN, when normally IV fluids INCREASE BP. My outpatient order used to read: " 1 liter NSS IV over 2 hours as needed weekly for 4 weeks for POTS flare, may be repeated x 1 more liter if needed". 

The good thing about Outpatient infusions is that they are given through peripheral IV access, which is a lot safer than a port. Infusion ports carry a high risk for blood clots and infection leading to life-threatening sepsis, which is why most docs are hesitant to order them. For me the benefits definitely outweigh the risks. My quality of life has immensely improved since I get them! But for many people Outpatient IV therapy on an as needed basis is equally effective. 

On 5/16/2021 at 10:31 PM, Knellie said:

Do you get them at an infusion place or do you have someone come to your house and do it for you? 

Peripheral IV sticks, such a for lab work etc, can be performed in any outpatient clinic that offers those services. IV ports need to be accessed by an RN, since they require a sterile environment and technique. The needle needs to be changed once a week, so I get a home care nurse do that for me. Administering the fluids while the needle is inserted can be done by me. 

 

[MomtoGiuliana]

I get saline infusions during flare ups--2-3 times per week at an infusion center.  It has helped a lot.

My specialist has ordered them.  Also my general practitioner has order them.  

When I am in a bad flare up it doesn't make me highly functional again but it gets me well enough that I am not lying down most of the time.  And I think that is so important bc lying down a lot will exacerbate orthostatic intolerance and it becomes a negative feedback loop--at least for me that is the case.

[Sushi]

My autonomic specialist was happy to leave an “as needed” order at a local hospital infusion center. He felt that 2 liters was the minimum “dose” and that it should be given slowly.

4 hours ago, Pistol said:

 it essentially makes your blood "thicker"

Could you say more about that? I have to take a prescription anticoagulant so that could be a problem so me if it affects blood viscosity to a significant degree.

[Pistol]

 

hello @Sushi - I guess I used the wrong word. No - it does not make your blood "thicker" as in an anticoagulant makes it thinner. I meant that with the electrolyte solution in LR the fluid is forced to stay within the blood vessels  - Saline gets pushed out of the vessels quicker. That is why I used the word thicker.

[DizzyGirls]

This subject interests me because my daughter has been getting saline over the past several months.  One thing she's noticed, though, is that it doesn't last long.  It helps for a few days and then she's back to where she started. 

@PistolI am so glad you mentioned the LR, as she is going in for more saline tomorrow and I think I'll ask for the LR instead!

[Pistol]

@DizzyGirls - yes, the saline used to help me temporarily but with the LR the effects last a lot longer. I am always good for at least 3 days, unless I am in a flare. Sometimes I already made it a week between infusions!!!!!

[DizzyGirls]

@PistolA week?!!!  That's fantastic!  Learning something new every day!

[Sarah Tee]

I hope I can try IV saline or LR even just once to see whether it helps. I don't have seizures or faint, so I can see it isn't medically necessary for me given the risks that have to be weighed up. But if it did help, I think that fact could be a sort of diagnostic clue to point out that yes, I do respond to IV volume expansion and therefore ... [insert medical revelation here].

That is very interesting about LR sticking around for longer, @Pistol. I did not know about that.

[Pistol]

3 hours ago, Sarah Tee said:

That is very interesting about LR sticking around for longer, @Pistol. I did not know about that.

Well - LR does not stick around longer, rather the EFFECTS are longer lasting. 

 

3 hours ago, Sarah Tee said:

I hope I can try IV saline or LR even just once to see whether it helps. I don't have seizures or faint, so I can see it isn't medically necessary for me given the risks that have to be weighed up.

@Sarah Tee - the risks with IV fluids are only high IF YOU NEED A PORT to infuse them, like for long term treatment. For outpatient treatment on an as needed base they usually are given through a peripheral IV access, like when they take a blood sample. I used to have this done at an outpatient center or even the ER. There are minimal risks involved with this, problem is you have to stay at the center for the infusion. For me a 4 hour infusion helped for 3 days on average, and was certainly ALWAYS a lifesaver to end any flares! Many POTS patients here in the US have standing orders from their docs to get infusions on an as-needed basis, which helps to both prevent and treat flares.