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    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.

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Ketotifen

hixxy

Senior Member
Messages
1,229
Location
Australia
I just got print outs of pathology results from my stay in hospital when the PEG was placed and its showing some abnormal IgG subset levels:

IgG3 0.07 (0.20 - 1.10)
IgG4 1.60 (0.08 - 1.40)

I've had low IgG3 in the past but this is much lower again (was 0.13 last time), but the elevated IgG4 is new to me.

I guess some googling is in order.
 

Gingergrrl

Senior Member
Messages
16,171
I've had low IgG3 in the past but this is much lower again (was 0.13 last time), but the elevated IgG4 is new to me.

@hixxy I am curious what you find out. My IgG subclass 3 was low on two prior tests but I have never been low in the other subsets and have never had an elevated level in any subsets. I wonder if this could qualify you for IVIG after all (or if you'd still require one of the three on-label diagnoses)? In the US, for immune deficiency you can also take the "vaccine challenge" and if you fail, you qualify for IVIG. I did not do this b/c vaccines are too dangerous for me and my symptoms are autoimmune but I wonder if that would be an option for you?
 

hixxy

Senior Member
Messages
1,229
Location
Australia
@hixxy I am curious what you find out. My IgG subclass 3 was low on two prior tests but I have never been low in the other subsets and have never had an elevated level in any subsets. I wonder if this could qualify you for IVIG after all (or if you'd still require one of the three on-label diagnoses)? In the US, for immune deficiency you can also take the "vaccine challenge" and if you fail, you qualify for IVIG. I did not do this b/c vaccines are too dangerous for me and my symptoms are autoimmune but I wonder if that would be an option for you?

IgG subset deficiency doesn't qualify you for IVIG here since 2008. No way I'd be willing to try a vaccine challenge. I had a hepatitis vaccine in the year my health collapsed, I don't know if it was a factor as my health was already declining when I had it.

In very brief googling it seems that elevated IgG4 can be associated with atopy.

What did your doctors say about your low IgG3? Does it hold any significance at all?
 

Gingergrrl

Senior Member
Messages
16,171
IgG subset deficiency doesn't qualify you for IVIG here since 2008.

It does not qualify you here either (at least not in and of itself).

No way I'd be willing to try a vaccine challenge.

I was not either and my doctor also felt it was too dangerous for me.

In very brief googling it seems that elevated IgG4 can be associated with atopy.

I had to Google atopy to see what it was but after reading about it, am curious if it relates to IgE levels? I am not really sure what each of the subclasses correlates with?

What did your doctors say about your low IgG3? Does it hold any significance at all?

My main doctor was not concerned about it and did not feel it was significant. Sorry I do not have any insights about it and wish I could be more helpful!
 

hixxy

Senior Member
Messages
1,229
Location
Australia
I've known for a while that oxalates have been contributing to my mast cell activation, but I'm not eating any oxalate containing foods now that I'm tube fed but horrible oxalate problems persist.

I've just noticed that I'm getting a huge amount of protein (80g) and I'm beginning to suspect that I'm a mostly endogenous producer and that the glycine in all this protein is degrading to oxalates.

I often feel a lot better after a pee (with dumping of oxalates), but the relief is very short lived before I'm overloaded with oxalates again.

:(:(:bang-head::bang-head:
 

Dufresne

almost there...
Messages
1,039
Location
Laurentians, Quebec
Maybe, I'm not sure. I've considered getting the house checked for mould, but have no idea what I'd to remediation wise as its not my home and my parents are getting very impatient with making changes for me and my severe MCS. There's no overt mould problem though, but I guess that is usually the case anyway.

Have you ever tried any kind of mold avoidance?
 

hixxy

Senior Member
Messages
1,229
Location
Australia
Have you ever tried any kind of mold avoidance?

I'm actually waiting for my mould test results to come back. There's no way I can afford to do the move and throw everything out thing though. I won't even be able to move full stop as my parents own this house and there's no way they would move. It would be hard enough to convince them of any level of remediation if there is a problem.
 

Dufresne

almost there...
Messages
1,039
Location
Laurentians, Quebec
I'm actually waiting for my mould test results to come back. There's no way I can afford to do the move and throw everything out thing though. I won't even be able to move full stop as my parents own this house and there's no way they would move. It would be hard enough to convince them of any level of remediation if there is a problem.

Sometimes even just sleeping out in the yard with new clothes and blankets for a week can be informative.
 

kangaSue

Senior Member
Messages
1,851
Location
Brisbane, Australia

hixxy

Senior Member
Messages
1,229
Location
Australia

Yep I went through those. ME/CFS certainly not included. I think there was even a study on it in Australia a long while back and it was ineffective and in some cases made patients worse. At least I saw that in a comment on an Australian FB group.
 

Gingergrrl

Senior Member
Messages
16,171
Yep I went through those. ME/CFS certainly not included. I think there was even a study on it in Australia a long while back and it was ineffective and in some cases made patients worse. At least I saw that in a comment on an Australian FB group.

I am not in Australia and have not read the links but I assume the ME/CFS patients were given the lower immune deficiency dose vs. the higher autoimmune dose (although I could be wrong)? My insurance does not have an ME/CFS diagnosis for me in my quest for IVIG and we are focusing on all of my autoimmune and neurological problems especially how they affect my breathing and muscles. I have no idea if this is helpful (and still fighting to get it myself). If it goes through, will share via PM how I did it to anyone needing help.
 

kangaSue

Senior Member
Messages
1,851
Location
Brisbane, Australia
Am glad you realized that and I do not tolerate preservatives in food but for whatever reason, I have no problems with the eye drops and they make it easier for me to wear contacts (less eye itching and inflammation).
@Gingergrrl I've been doing a bit of research into the possibility of being allergic to polyethylene glycol (PEG) or propylene glycol (PG) since I stopped vomiting just from switching eye drops and have found that an allergic reaction to PEG or PG is the case for many people and can cause anaphylaxis in some when they have been tipped over the edge from chronic exposure to either one, something which is hard to avoid because it is a well entrenched ingredient in thousands of products.

I have come across cases of people having strong reactions to CT contrast agent, ultrasound testing lubricants and common laxatives which was put down to the PEG content but it's also in foods, cosmetics, toiletries, drugs, plastic bottles....you name it, it could be in it so just something to be aware of as a source of allergy which can arise from a slow accumulation over time.

https://aacijournal.biomedcentral.com/articles/10.1186/s13223-015-0106-9
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4316229/
 

Thinktank

Senior Member
Messages
1,640
Location
Europe
I decided to try ketotifen today and it slammed me hard! Last night i took 0.5 LDN and somehow i felt kinda allergic all morning.
After reading about the effective dose of ketotifen in MCAS i went for 1mg, quite a low dose right?
I took a pill after lunch around 12.30, at first it made me feel mellow, the false energy i get in an allergic state vanished and my skin calmed down. Around 13.30 i couldn't keep me eyes open, went to bed and awoke nearly 5 hours later! I did wake up lightly a few times in a confused state, not knowing where i was but i felt asleep again in seconds.
Nothing else has ever done that to me except a high dose of benzodiazepine.
It will take me a few more hours to recover but then it's bedtime again, i'll probably not sleep much tonight.

Anyone wit ha similar reaction to ketotifen? Ceterizine has a very sedating effect on me too but not nearly as dramatic.
 

hixxy

Senior Member
Messages
1,229
Location
Australia
The sedating effect is normal. Start the dose even lower and titrate. It should decrease over a week or 2, Each time you increase the dose the sedation will probably return for a while. Also take it before bed until you get the sedation under control.

I know of one person who took it and the sedation never went away but it goes for most people. It can also make you feel depressed during this stage too.
 

Thinktank

Senior Member
Messages
1,640
Location
Europe
The strange thing is when i tried ketotifen 2 years ago it gave me an overstimulated feeling! Now it just knocks me out.

I should have known better because i'm sensitive to most medication. How some MCAS patients can take 6mg of this stuff is beyond me.

As the hours past by and the sedative effect wore off i started to feel agitated and really cranky, not so much depressed.
 

justy

Donate Advocate Demonstrate
Messages
5,524
Location
U.K
I decided to try ketotifen today and it slammed me hard! Last night i took 0.5 LDN and somehow i felt kinda allergic all morning.
After reading about the effective dose of ketotifen in MCAS i went for 1mg, quite a low dose right?
I took a pill after lunch around 12.30, at first it made me feel mellow, the false energy i get in an allergic state vanished and my skin calmed down. Around 13.30 i couldn't keep me eyes open, went to bed and awoke nearly 5 hours later! I did wake up lightly a few times in a confused state, not knowing where i was but i felt asleep again in seconds.
Nothing else has ever done that to me except a high dose of benzodiazepine.
It will take me a few more hours to recover but then it's bedtime again, i'll probably not sleep much tonight.

Anyone wit ha similar reaction to ketotifen? Ceterizine has a very sedating effect on me too but not nearly as dramatic.
yes, this is normal - patients are advised to begin it at night and with a small dose - its taken me over a year to work up to 3/4 of 1 mg due to its sedating and dehydrating effects - cant take more than that because even though I drink lots of water I wake up with my eyes stuck together because they are so dry! still it is helping my reactions.
 

justy

Donate Advocate Demonstrate
Messages
5,524
Location
U.K
@hixxy how is it going with the Ketotifen?
just wanted to let you know that it can take 6 months to a year on a new drug to see the full effects with MCAS - I don't know why this is , but us talked about a lot on the boards. I found that K didn't help right away - in fact at first I thought I was allergic to it because itching increased. ive stuck with it though and over a year on it im doing better reactions wise. Not perfect - drug reactions are still bad.

I cant get beyond 3/4 of 1mg - makes me too dehydrated - am taking double dose Loratidine as well and ranitidine 2 x daily. shame I cant take any daytime dose, but it just knocks me unconscious.
 

hixxy

Senior Member
Messages
1,229
Location
Australia
I'm going to retry again soon. Just trying to sort out some other stuff first. I'm also going to hit my immunologist up for a trial of Xolair in the new year I think. My gastroenterologist mentioned it to me but he doesn't feel confident doing it given how severely hypersensitive I am. I think I scare him lol.