Albumin infusions

[Sarah Tee]

I have been searching and searching to try to find information on this topic because my saline infusion trial sadly failed to produce any improvement. It's a long shot, but maybe the fluid is leaving my blood too quickly to be helpful. As I understand it, some people with refractory POTS respond to albumin infusions after not responding to saline infusions. The reason for this is probably that the albumin keeps the extra fluid in the blood (for a while at least).

So here is my question:

Do people receiving albumin infusions for OI have low serum albumin, or is that unrelated in this context?

I can see it might be unrelated, because if you add saline plus albumin, you are not actually increasing the proportion of serum albumin because you are adding it in tandem with extra volume.

I looked through a cancelled trial that was supposed to test albumin infusions, but there is no mention of low serum albumin in the inclusion criteria. They were going to test people with severe POTS who had abnormal sweat testing results and who had not responded to the usual treatments.

https://clinicaltrials.gov/ct2/show/NCT03365414

I am wondering whether to push my specialist for this. I found going for the saline infusions exhausting. Then again, if it works, I won't find it exhausting!

I have another avenue to explore, which is auto-immune testing / seeing a rheumatologist. (You might remember I posted recently that I felt completely back to normal while taking a five-day course of prednisolone, and that my symptoms were reduced for about two months afterwards, with fatigue gradually returning.)

[Pistol]

@Sarah Tee I was told by Dr Grubb that they found evidence that POTS is related to the INNATE immune system, rather than an autoimmune problem. To test this a rheumatologit would have to check different values than autoimmune issues. Here is an article related to this

New research adds to evidence that POTS may be an autoimmune disorder (medicalxpress.com)

 

[MikeO]

3 hours ago, Sarah Tee said:

Do people receiving albumin infusions for OI have low serum albumin, or is that unrelated in this context?

I think one serum level is more related to being a health indicator in most folks i.e... liver disease, kidney issues being low and dehydration being high. I did look mine up and the last two er visits is was in the middle ground of normal (4.3). From my take on the serum infusions it raises blood volume just not sure what the working mechanism is....

I did have the infusions during after my bypass surgery and was very anemic. My serum levels were at that time very low. 

Not sure if this helps - just is what i know. 

[Sarah Tee]

Thanks @MikeOand @Pistolfor your replies.

I was quite surprised today to hear from my specialist that he has arranged for me to try one session of albumin plus saline. There's so little documentation on it out there that I expected him to refuse.

It will be on Monday week.

It is a long shot. I will report back.

Even if it doesn't work for me, at least my specialist and the registrar at the hospital now know about it as a possible treatment. Who knows, they may use it in future on someone with really bad refractory OI/POTS.

If it does work for me, I will ask my specialist to write me up as a case study!

Here's a story about a young woman in Canada being treated by Dr Siddiqi with albumin:

https://www.cbc.ca/news/canada/saskatchewan/katherine-kay-diagnosis-genetic-testing-1.4260019

I wonder how she is doing now.

***

My auto-immune panel came back normal, but it was a basic one. Thank you for the study link, @Pistol. I will need to read up a bit more. I have heard of the innate immune system but my knowledge in that area is sadly lacking.

It's hard trying to learn about all this without much background in biology or medicine. I noticed that the video lectures from this year's Dysautonomia International conference are trickling out. I should have signed up, it wasn't expensive. (Maybe I still can.) There might be some more on the immune aspect.

***

Hope everyone has a decent weekend. I am going to help my dad with a small DIY job. I sit nearby and pass him things :-)

 

[RecipeForDisaster]

3 hours ago, Sarah Tee said:

Thanks @MikeOand @Pistolfor your replies.

I was quite surprised today to hear from my specialist that he has arranged for me to try one session of albumin plus saline. There's so little documentation on it out there that I expected him to refuse.

It will be on Monday week.

It is a long shot. I will report back.

Even if it doesn't work for me, at least my specialist and the registrar at the hospital now know about it as a possible treatment. Who knows, they may use it in future on someone with really bad refractory OI/POTS.

If it does work for me, I will ask my specialist to write me up as a case study!

Here's a story about a young woman in Canada being treated by Dr Siddiqi with albumin:

https://www.cbc.ca/news/canada/saskatchewan/katherine-kay-diagnosis-genetic-testing-1.4260019

I wonder how she is doing now.

***

My auto-immune panel came back normal, but it was a basic one. Thank you for the study link, @Pistol. I will need to read up a bit more. I have heard of the innate immune system but my knowledge in that area is sadly lacking.

It's hard trying to learn about all this without much background in biology or medicine. I noticed that the video lectures from this year's Dysautonomia International conference are trickling out. I should have signed up, it wasn't expensive. (Maybe I still can.) There might be some more on the immune aspect.

***

Hope everyone has a decent weekend. I am going to help my dad with a small DIY job. I sit nearby and pass him things 🙂

 

That’s amazing! I am inspired by your doctor doing that. I would have expected anyone to refuse. It’s hard enough to get saline or LR in many cases! Good luck - I hope it is really helpful.

 

That sounds great about helping your dad. I would love to do that. It’s my speed these days!

[MikeO]

57 minutes ago, RecipeForDisaster said:

That’s amazing! I am inspired by your doctor doing that. I would have expected anyone to refuse. It’s hard enough to get saline or LR in many cases! Good luck - I hope it is really helpful.

 

That sounds great about helping your dad. I would love to do that. It’s my speed these days!

If i was a Girl i am sure i would be more articulated in my response. But @RecipeForDisasterhas expressed it well. Wish a good outcome @Sarah Tee

[Sarah Tee]

Found another story about a Canadian person with POTS who is/was receiving albumin infusions:

https://mystory.blood.ca/en/story/those-think-who-does-my-donation-really-help

Same patient of Dr Siddiqi's who was interviewed in a news story for CBC:

https://www.cbc.ca/news/canada/saskatchewan/katherine-kay-diagnosis-genetic-testing-1.4260019

Just adding it here for people who might be looking at this topic in the future. I have had to dig a lot to find anything about it.

[Sarah Tee]

I have a small update. I went in to my (sort of) local hospital for an albumin infusion yesterday (Thursday) at 12 noon. It took a while to fill in paperwork and get the IV in and I had to see a doctor and sign a consent form because albumin is a blood product.

The infusion started about 1pm. The exact thing I received is called Albumex 4, a very pretty citrus yellow transparent liquid in a glass bottle. I had two bottles over two hours. (I think the bottles were 500mL each, but will have to double check that. Edit: Yes, that’s correct. I weigh about 80kg for reference.)

I am not sure how my specialist decided on the dose; I will ask him when I see him.

The fluid felt a little cold going in, so the nurse gave me a warmed blanket to wrap around my arm. I felt no other particular sensations and had no side effects.

Towards the end of the first bottle, I started to feel a little better, but didn't want to "jinx it" or imagine anything. By the end of the first bottle, I was sure that I was feeling better. This feeling continued at the same level while I had the second bottle.

The effect of the albumen was to improve all my nasty symptoms. Crushing fatigue, background nausea/lack of appetite, horrible drained feeling in face, brain fog, and facial pallor were all much improved.

However, my physical energy levels did not return to normal. (I still experience normal energy levels a few nights a week when my symptoms go away at about 11pm. I also had a brief taste of normality during the day while taking steroids for an allergy a few months ago.)

I went to bed early on Thursday night so I don't know whether I would have had one of my nighttime remissions.

Today, I noticed I felt less horrible than usual on waking. I was able to stay upright all day. I was able to potter about comfortably, make a simple meal and clean the kitchen a bit, and do a couple of minutes of easy gardening. When I needed a rest, I sat down. (Usually I would need to lie down for half an hour several times a day and would struggle to do much of anything.)

So I can say that it has temporarily fixed my orthostatic intolerance because standing was simply a bit tiring on my legs / lower back rather than making me feel presyncope. Yay!

But I didn't feel like going for a walk or exercising. I applied my personal exercise test: squats. I was able to do 5 in a row (just). When I feel "normal", I can do 20. So I still had low energy and exercise intolerance and struggled a bit climbing the stairs to the upstairs bathroom.

So, to summarise, I felt better but did not feel completely normal.

We are now waiting to see how long the positive effect lasts. If it wears off quickly, then it's probably not worth my having regular infusions given the time to get to the hospital and back and the fact that going there in itself is a bit tiring. But if the benefit sticks around for longer, then maybe a weekly or (ideally) fortnightly infusion will be possible.

It is now 10pm on Friday night. I will report back in a week and let you know what happens!

[RecipeForDisaster]

20 minutes ago, Sarah Tee said:

I have a small update. I went in to my (sort of) local hospital for an albumin infusion yesterday (Thursday) at 12 noon. It took a while to fill in paperwork and get the IV in and I had to see a doctor and sign a consent form because albumin is a blood product.

The infusion started about 1pm. The exact thing I received is called Albumex 4, a very pretty citrus yellow transparent liquid in a glass bottle. I had two bottles over two hours. (I think the bottles were 500mL each, but will have to double check that.)

I am not sure how my specialist decided on the dose; I will ask him when I see him.

The fluid felt a little cold going in, so the nurse gave me a warmed blanket to wrap around my arm. I felt no other particular sensations and had no side effects.

Towards the end of the first bottle, I started to feel a little better, but didn't want to "jinx it" or imagine anything. By the end of the first bottle, I was sure that I was feeling better. This feeling continued at the same level while I had the second bottle.

The effect of the albumen was to improve all my nasty symptoms. Crushing fatigue, background nausea/lack of appetite, horrible drained feeling in face, brain fog, and facial pallor were all much improved.

However, my physical energy levels did not return to normal. (I still experience normal energy levels a few nights a week when my symptoms go away at about 11pm. I also had a brief taste of normality during the day while taking steroids for an allergy a few months ago.)

I went to bed early on Thursday night so I don't know whether I would have had one of my nighttime remissions.

Today, I noticed I felt less horrible than usual on waking. I was able to stay upright all day. I was able to potter about comfortably, make a simple meal and clean the kitchen a bit, and do a couple of minutes of easy gardening. When I needed a rest, I sat down. (Usually I would need to lie down for half an hour several times a day and would struggle to do much of anything.)

So I can say that it has temporarily fixed my orthostatic intolerance because standing was simply a bit tiring on my legs / lower back rather than making me feel presyncope. Yay!

But I didn't feel like going for a walk or exercising. I applied my personal exercise test: squats. I was able to do 5 in a row (just). When I feel "normal", I can do 20. So I still had low energy and exercise intolerance and struggled a bit climbing the stairs to the upstairs bathroom.

So, to summarise, I felt better but did not feel completely normal.

We are now waiting to see how long the positive effect lasts. If it wears off quickly, then it's probably not worth my having regular infusions given the time to get to the hospital and back and the fact that going there in itself is a bit tiring. But if the benefit sticks around for longer, then maybe a weekly or (ideally) fortnightly infusion will be possible.

It is now 10pm on Friday night. I will report back in a week and let you know what happens!

Very interesting! Do you know where your usual serum albumin runs? Mine is on the high end. I’m getting IV fluids and have been for 3 days now - the nausea I’ve had for weeks is GONE. I want to eat! I never feel like that anymore.

[MikeO]

@Sarah Teethis sounds promising. Fingers crossed for you! Can't wait to read your follow up.

[Sarah Tee]

@RecipeForDisaster, I don’t think I’ve had my serum albumin tested in recent times. I’ve been meaning to check through my records to see if it’s there but haven’t quite got round to it.

Is yours on the high end of the normal range? If so, it is hopefully combining with all that nice saline and enabling it to stick around.

I’m so glad your nausea is gone. I hope you can enjoy a few favourite meals/snacks!

My specialist has ordered me three more sessions. Not sure whether they are to be weekly or fortnightly. The day unit at the hospital is a bit booked up pre-Christmas so there may be a wait, but that is okay. They have been very kind and accommodating so I know they will fit me in as soon as they possibly can.

[Sarah Tee]

Thanks, @MikeO!

I am honestly amazed that my specialist ordered it, and amazed that it worked. I am also a little dumbfounded that it only happened because I had seen it mentioned here and then chased down some references to its use in Canada and asked whether I could try it. My specialist had said that we were pretty much out of options if saline didn’t work.

DINET to the rescue!

He has ordered three more sessions, so watch this space.

[MikeO]

1 hour ago, Sarah Tee said:

Thanks, @MikeO!

I am honestly amazed that my specialist ordered it, and amazed that it worked. I am also a little dumbfounded that it only happened because I had seen it mentioned here and then chased down some references to its use in Canada and asked whether I could try it. My specialist had said that we were pretty much out of options if saline didn’t work.

DINET to the rescue!

He has ordered three more sessions, so watch this space.

Sarah Tee really sounds like you have a caring specialist. Results so far looks promising. Have you noticed a change in blood pressure or heart rates?

Please keep us posted as to your progress!

Best,

Mike

[RecipeForDisaster]

9 hours ago, Sarah Tee said:

@RecipeForDisaster, I don’t think I’ve had my serum albumin tested in recent times. I’ve been meaning to check through my records to see if it’s there but haven’t quite got round to it.

Is yours on the high end of the normal range? If so, it is hopefully combining with all that nice saline and enabling it to stick around.

I’m so glad your nausea is gone. I hope you can enjoy a few favourite meals/snacks!

My specialist has ordered me three more sessions. Not sure whether they are to be weekly or fortnightly. The day unit at the hospital is a bit booked up pre-Christmas so there may be a wait, but that is okay. They have been very kind and accommodating so I know they will fit me in as soon as they possibly can.

Yes, mine is near the top of the range and I don’t know why (I sure don’t eat that much protein). Lactated ringers sticks around longer than saline does for me. Hopefully I’ll be able to get it again soon… it was on back order. I’m back to being nauseous, unfortunately. I ate as much as I could over the weekend! I almost feel back to my usual crummy self again - I finished my fluids mid day on Friday, so I’m not surprised.
 

That is wonderful - I love to see people getting to get potential help, especially if it’s outside the box thinking,

[Sarah Tee]

Albumin infusion no. 2 happened on Friday.

It was a long day – we left the front gate at 10.30am and got back at 5.30pm, no stops apart from quick toilet breaks.

I am finding it takes about two days for me to recover from the trip to the hospital.

Everyone else seems to find the chairs comfy, but I've tried a different way of sitting each time, plus lots of toilet trips and pacing up and down when I can (limited), but I always end up with horrible DOMS that evening and the next day. Not to mention being sweaty from being partially encased in vinyl.

Anyway, the infusion did help me feel a little better, but I'm thinking that this is not going to work for me long term. It is good to know about; for example, should I get worse or catch a nasty bug, and when I have to have bowel surgery next year.

I still think it is worth trying if no other treatments have worked for you and you have no contraindications for blood products.

I've had no direct side effects, unlike with stimulants which improved my energy levels but caused nightmares and muscle pain, for instance.

[Sarah Tee]

Just a quick addition: A couple of people had asked me whether my serum albumin was normal. I didn’t realise it, but my specialist had tested this a while ago as part of a panel of blood tests, before we even thought of albumin infusions, and it was normal.

This is good news, because a low serum albumin predicts poor outcomes for surgery, and I have to have bowel surgery soon.

I have an appointment with my specialist in February. Will have to hash out whether I can get infusions at home (unlikely) or whether he will prescribe prednisolone. So far these are the only treatments that have worked for me. But maybe he has something else that I can try.

It is hot in Australia at the moment and despite aircon I am feeling pretty miserable between infusions.

[Pistol]

@Sarah Tee wishing you all the best for your upcoming surgery! Remember that we take longer to recuperate than Others, so be patient, and be kind to yourself! 

[Sarah Tee]

Thanks, @Pistol. I am hoping the recuperation time will be offset by a reduction in digestive distress and the size of my abdomen (it's a bit distended). Meeting new surgeon soon for second opinion.

[Sarah Tee]

Had my 4th infusion last week. Unfortunately I was a bit unwell in January and didn't get four in a row as planned; but I did have three in a row.

We changed the fourth one to one bottle (500mL) for a couple of reasons.

• One bottle "felt enough" to me.
• I was getting slight headaches in the days following two-bottle infusions.
• I wanted to reduce the time I had to spend in the hospital because the chairs and the sitting still are so uncomfortable to me.

Unfortunately I wasn't able to gauge whether one bottle had the same effect as two bottles in the days following because I managed to make myself ill.

I was wearing a different bra on the day I went to the hospital than I usually wear at home (still one that I wear regularly and has never caused problems before). Maybe it was the hot weather or the long day, but for the next two days I had a severe outbreak of itching on my torso, arms and hands spreading out from where the bra band had been resting on my skin. Bizarrely the itching didn't start until hours after I had gotten home, changed into my PJs and gone to bed, and there was no redness or rash of any kind.

I am sure it wasn't the laundry detergent because all my clothes are washed in the same one, including the undies and clothes I was wearing, which were also in close contact with my skin.

It was truly horrid. I was plastering myself with oatmeal cream, steroid cream, and even made an attempt at a "wet wrap" as done for eczema patients between cool showers. I feared I might have to go into Emergency for something stronger (GP not available as it was the weekend). Thank goodness it subsided on its own.

I have always had slightly sensitive skin, and it seems to be worsening as I get older and frailer. It is sensitive to mechanical stress rather than allergies. I suspect I have a sub-clinical connective tissue problem. I will have to be more careful in future.

[Sarah Tee]

Oh, one more thing. My dad wrote to Dysautonomia Intnl and suggested that they get Dr Siddiqi to give a lecture on his use of albumin infusions in refractory POTS patients. They responded and seemed interested. I hope it will be included in the next conference so more doctors can hear about it and maybe we will see some research or at least a few more case studies published on this topic.

[Pistol]

@Sarah Tee You are brave for trying it, and courageous to stick it out! Thank You for sharing your experience! --- Personally I would be careful after developing the rash. Skin rashes and itching are listed under the precautions for albumin infusions and need to be reported immediately to the prescribing physician. If you are planning another infusion I would definitely make them aware of this reaction before the infusion! Even if it was unrelated to the albumin - it COULD be an allergic reaction to it, and that can be fatal! 

[Sarah Tee]

@Pistol, I didn’t respond to this comment at the time, sorry. I agree, the hives I had perhaps should have been taken more seriously. I did report them to the doctor in the hospital who gave me all the warnings and oversaw things.

To anyone reading this in the future, blood products are a serious step to take in a non-emergency situation. Looking back on this now, I don’t think I should have been given this treatment.

For someone who is bedbound, or fainting frequently, or having other serious symptoms, it is worth considering. I won’t have it again unless I get to that stage, or need it after surgery.

I am glad I did it in one way, because I learnt that IV albumin works on me even though IV saline doesn’t, and that is interesting and may indicate increased capillary permeability.

In another way, I now view it as a rather foolish escapade on my part and too much laissez faire from my specialist.

[Sarah Tee]

Just adding some intersting information that I was told today:

Albumin has immune-modulating properties.

!

Here is one article about it:

Article on PubMed: https://pubmed.ncbi.nlm.nih.gov/29219627/

Direct link to read PDF of article: https://repositori.upf.edu/bitstream/handle/10230/35723/ferrer-erf-nono.pdf?sequence=1

This was discovered when researchers were using IV albumin as a placebo against IVIg because it has similar physical properties. To the researchers’ surprise, blood from patients receiving the placebo showed immune changes.

As to what the changes were or what that might mean for someone with dysautonomia receiving albumin, I can’t say. Goes a bit beyond my reading comprehension.

From what I can gather from people’s experiences, the positive effects of albumin on our immune system wear off fairly quickly, as opposed to the effects of IVIg, which can be long lasting in some people after the IVIg is stopped.