• Welcome to Phoenix Rising!

    Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of and finding treatments for complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia (FM), long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.

    To become a member, simply click the Register button at the top right.

Clinical Trial: IV Albumin for Severe POTS

Ema

Senior Member
Messages
4,729
Location
Midwest USA
A Double Blind Randomized Controlled Crossover Study to Systematically Assess the Efficacy and Safety of Intravenous Albumin Infusions in Severe Postural Orthostatic Tachycardia Syndrome

POTS is characterized by an excessive increase in heart rate and light-headedness on assuming an upright posture, standing or sitting that at times culminates in syncope. Most symptoms of POTS result from marked cardiovascular deconditioning and activation of sympathetic responses due to cerebral hypoperfusion.

Plasma volume expanding therapies are one of the mainstays of treatment. Saline infusions in patients with severe orthostatic intolerance lead to rapid but transient symptomatic improvement lasting several hours. Human albumin infusions are used for plasma volume replacement/expansion and have been shown to significantly improve cerebral blood flow.

A small subset of patients suffering from severe POTS have shown robust response to weekly albumin therapy, supporting the investigator's hypothesis that periodic albumininfusions will provide significant and sustained symptomatic relief to patients with severe POTS. This would increase their orthostatic tolerance and improve functional capacity without the limitations and side effects associated with other therapies.

http://ichgcp.net/clinical-trials-registry/NCT03365414
 
Last edited by a moderator:

Ema

Senior Member
Messages
4,729
Location
Midwest USA
I spoke with a doctor who suggested this treatment. And also it’s apparently just a transitory improvement, lasts a few days. There are some side effects too, despite what the above says.
What side effects did they mention?
 

bombsh3ll

Senior Member
Messages
287
Thanks so much for sharing this Ema, I will definitely be following this trial! I would love to try albumin but am sure I would need to provide evidence for its use in order to obtain it.
 

Hip

Senior Member
Messages
17,824
A small subset of patients suffering from severe POTS have shown robust response to weekly albumin therapy, supporting the investigator's hypothesis that periodic albumininfusions will provide significant and sustained symptomatic relief to patients with severe POTS.

I wonder if that small subset who respond to albumin have echovirus as the cause of their POTS symptoms: albumin has antiviral effects against echovirus.
 

Hip

Senior Member
Messages
17,824
Any idea what type of doctor one needs to go see to be checked for echovirus?

Echovirus is an ME/CFS-associated virus, so some of the ME/CFS doctors will test for it. Dr Chia is the expert in such enterovirus-linked ME/CFS.
 

Peyt

Senior Member
Messages
678
Location
Southern California
Echovirus is an ME/CFS-associated virus, so some of the ME/CFS doctors will test for it. Dr Chia is the expert in such enterovirus-linked ME/CFS.
Thanks for this info.
I did a quick search on Dr. Chia and apparently before taking on any new patients he wants the patient to be diagnosed with CFS with another Doctor and get some blood tests done that shows if there are any viruses that he looks for.

So my question is: Any idea which viruses he would most likely want the patient to be tested for so I can ask my doctor to run those blood test to see if I even have those viruses ?
Thanks again.
 

Peyt

Senior Member
Messages
678
Location
Southern California
From what I read, Albumin is responsible to maintain the oncotic pressure in the blood vessels. This is the pressure that assures that blood will flow in the body in equal amount everywhere in the body. I could see how this would help some POTS patients.
 

Ema

Senior Member
Messages
4,729
Location
Midwest USA
I let this potential treatment go for lack of information back in 2018, but am considering it again, as some recent reports have indicated that it is helpful for a wider variety of immune conditions. I wonder if anyone else has tried IV albumin in the meanwhile? From what I can tell, it is fairly inexpensive and I can do it in the IV room at my doctor's office.
 
Messages
17
I have tried IV albumin for OI symptoms after IV saline didn’t work (and neither did many previous treatments and interventions).

It did help me, but the improvement wore off fairly quickly, and the trip to and from the hospital basically cancelled it out.

It is a blood product, so you have to consider similar risks of allergic reaction and transmission of diseases as you would with a blood transfusion. There can be other problems too, specific to having albumin.

There’s not much published on its use in OI, just this poster and a couple of case studies:
https://www.cambridge.org/core/jour...rative-study/60BFDDF0558BE61F70799DEE202A0AE9

There was supoosed to be a large-ish trial, as posted earlier in this thread, but it was “withdrawn”, whatever that means. Cancelled?

Here is a story of someone with severe POTS having it in Canada:
https://www.cbc.ca/news/canada/saskatchewan/katherine-kay-diagnosis-genetic-testing-1.4260019

The possible explanation as to why it albumin works in some people when saline doesn’t is that albumin has “sticking power” that temporarily holds it on the blood volume despite leaky capillaries. This isn’t specifically published anywhere but I’ve gleaned it from various sources and reading about what albumin does in the blood.
 
Messages
17
I have also recently discovered that albumin has immune-modulating properties. I am afraid that the details of this are beyond my understanding, but another reason albumin made me feel better could be that it temporarily pushed back against my unspecified auto-immune or auto-inflammatory condition.

(My doctors agree that because I feel better on prednisolone and for months after a short course of prednisolone I must have an auto-immune or auto-inflammatory condition. Frustratingly it’s not diagnosable yet but I am seeing some new specialists soon, so fingers crossed.)
 

Hoosierfans

Senior Member
Messages
400
I have also recently discovered that albumin has immune-modulating properties. I am afraid that the details of this are beyond my understanding, but another reason albumin made me feel better could be that it temporarily pushed back against my unspecified auto-immune or auto-inflammatory condition.

(My doctors agree that because I feel better on prednisolone and for months after a short course of prednisolone I must have an auto-immune or auto-inflammatory condition. Frustratingly it’s not diagnosable yet but I am seeing some new specialists soon, so fingers crossed.)
Im thinking of asking my autonomic neuro about trying IV albumin. In part bc Iv saline doesn’t do much for me, BUT last year when I did IVIG for 9 months I would feel better the day of infusions and for maybe 2 days post. Like, quite a bit better. My IVIG doc was kind of stumped — the benefits should have lasted longer…..but now it makes sense, maybe it’s the albumin in the IVIG that was helping vs the IGG.

How long did the benefits last for you? Lucky for me since I had IVIG last year, I have a home infusion service that could come in and do the IV albumin for me.
 
Messages
17
@Hoosierfans , I’m sorry I didn’t reply sooner. The good effects for me did not last long, unfortunately. As I was getting the albumin infusion, I would start to feel brighter about half way through. I would then be able to go for a bit of a walk in the park near the hospital, but by the time we drove home and the muscle aches of the car seats and infusion chairs hit me, it was almost gone.

I estimate that if I didn’t have the stress of having to have it done in hospital, I would have felt better for a couple of days.

Since all that happened, I have been pretty definitively diagnosed with OCHOS (type of dysautonomia) and there is no longer a suspicion of CFS. I am also sure now that I don’t have low blood volume, so the albumin effect must have been autoimmune for me.

I do think that it has blood volume “sticking” potential for folks who have low blood volume. Plus a little gentle immune modulation seems like it would be helpful for many.

I still visit this board occasionally because fatigue is a big part of my illness and I learnt a lot about OI from reading Health Rising and this board.

Did you end up trying IV albumin yourself?
 
Last edited:
Messages
17
@Hoosierfans , given your experience with IVIg, you might be interested in this study that’s just out:

https://pubmed.ncbi.nlm.nih.gov/38311655/

Quick summary is that they treated people with POTS with either IVIg (active treatment) or IV albumin (placebo). But both groups showed a statistically significant improvement. So maybe the albumin helped by its “sticking power” for boosting blood volume, by its immunomodulatory properties, or both.

Maybe @Pyrrhus can do a snazzy summary on this?
https://www.researchsquare.com/article/rs-3500596/v1.pdf

By the way, this is the first proper study on IVIg in POTS. Very exciting (even though I don’t have POTS)!
 

Hoosierfans

Senior Member
Messages
400
I’ve done 2 out of 4 ordered albumin infusions and so far no difference for me. Maybe volume isn’t my problem after all. I’ll complete the series and report back.
 
Messages
17
@Hoosierfans , I do hope it helps by the time you get to 4, but I guess if it doesn’t work that may be useful information.

So maybe the IVIg was helping, just in a short-lived way?

All this can be so frustrating when there’s often no testing to complement treatments.

I have all my fingers and toes crossed that the new method of blood volume measurement (CO2 rebreathing) is going to find a home in many hospitals and autonomic labs and at the Bateman Horne Center, Stichting Cardio Zorg, and other places that treat folks with CFS and OI.

Sure, knowing your blood volume won’t lead to a cure, but it would save a lot of time to know whether or not you need volume expanding therapies, and then to know whether the therapies are working.

If I win lotto, I will donate one somewhere!