Author Topic: Mast Cell Activation Syndrome  (Read 54672 times)

Muon

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Re: Mast Cell Activation Syndrome
« Reply #180 on: April 30, 2020, 09:48:44 AM »
Ok fair enough, deleted the comment.

Muon

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Re: Mast Cell Activation Syndrome
« Reply #181 on: May 01, 2020, 06:24:35 AM »

Clues

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Re: Mast Cell Activation Syndrome
« Reply #182 on: May 04, 2020, 02:53:01 AM »
Yes but you are narrowing your chances if you skip most of the diagnostic parameters.

Hey Muon. Thanks again for your invaluable input here. I saw your deleted comment that demo quoted. ;) And I 100% feel you, and I feel the same anger and frustration at having to struggle to be believed (by some), and to get help. However I've got to play the hand I'm dealt here. Regardless of this doctor's potential shortcomings, bursting in there and telling him how to do his job is not going to work. He currently suspects Mastocytosis (as do I), and I think my best bet is to let him try to diagnose it his way, but if he fails to come up with anything, be politely insistent that he look at MCAS etc, and point to relevant research.

Muon

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Re: Mast Cell Activation Syndrome
« Reply #183 on: May 04, 2020, 10:57:40 AM »
To get a feel for relative numbers here are some rough estimates. Let's compare the MCAD subtypes Mastocytosis and MCAS.

For Mastocytosis, in western Europe , the prevalence is ~5-13/100,000 (Epidemiology)

Let us take 10 for easy calculation: (10/100,000)*100% = 0.01%

Recent papers have estimated a potential prevalence of MCAS within the 10% - 19% range. Let's take 10%. Ref

The estimated prevalence of the two MCAD disease types differs, roughly, by a factor of ~1000.

Take a look at this diagram again: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC7003574/figure/F1/

The green box with the text 'MCMD without elevated tryptase or MC profileration'. That one is more prevalent than diagnoses depicted by the other colored boxes. And not by a small margin but by a huge one. This algorithmic pathway is being skipped in healthcare while it is your most important one based on prevalency.

I think the reason he made that specific selection of supportive serum measurements (IL-6, IL-31, CCL2, CXCL8) is to cover a wide range of MC activation pathways which are involved in selective mediator release, like these: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3318920/table/T3/ .There are tons of them.
« Last Edit: May 04, 2020, 11:05:16 AM by Muon »

aswinpras06

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Re: Mast Cell Activation Syndrome
« Reply #184 on: May 04, 2020, 09:34:07 PM »
Hi everyone
The past 6 months have been really hard for me.  I am 42 now and I don't know how long I can tolerate  this dreadful disease.  My lungs are almost damaged now and very soon I will be on oxygen for breathing everyday.  All these years I have been an idiot and never thought seriously about my breathing problems and always thought they were caused by pois.  I never did a detailed investigation of my lungs and I now have end stage bronchiectasis.

But at last I have found the reason for my lung damage and probably for my pois. Mast cell activation disorder.  This was found by my pulmonologist after 6 months of many therapies which never worked for me due to my abnormal mast cell activation. At first he never accepted my theory about mast cells but later ordered seum tryptase test which was high.  But a baseline value could not be found because it was always high due to my constant triggers like fan air,showers, lack of sleep due to my lung problems.  Now he has recommended for omalizumab therapy.  But due to the covid ,19 I could not get admitted and try omalizumab which requires close monitoring. Hope I can get the therapy within a few months.  Will update once I get my anti-ige therapy.


Clues

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Re: Mast Cell Activation Syndrome
« Reply #185 on: May 05, 2020, 01:51:09 AM »
The green box with the text 'MCMD without elevated tryptase or MC profileration'. That one is more prevalent than diagnoses depicted by the other colored boxes. And not by a small margin but by a huge one. This algorithmic pathway is being skipped in healthcare while it is your most important one based on prevalency.

That's super interesting, thanks Muon. To be fair I don't think my doctor is rushing to a conclusion here, and in fact he's technically following that algorithm so far. He first tested tryptase, which was normal. I've got a lot of unexplained skin lesions, so the next step is a skin biopsy. So we're following that rightmost branch there at the moment. This graph is great to have as a reference.

I think the reason he made that specific selection of supportive serum measurements (IL-6, IL-31, CCL2, CXCL8) is to cover a wide range of MC activation pathways which are involved in selective mediator release, like these: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3318920/table/T3/ .There are tons of them.

OK, that's good to know, thanks. I'll report back after the skin biopsy in a month or so!

In the meantime I'm making lifestyle changes to experiment. I've employed an MCAD-friendly diet and skin products, started intermittent fasting, and avoided orgasm and hard exercise in the last few weeks. Oh and also I'm doing Psoas exercises and Wim Hof breathing. My digestion has felt amazing apart from occasional light constipation. Brain fog and irritability have been consistently low. Other symptoms like skin lesions and extreme cold sensitivity have been the same as before. I tried an orgasm on Sunday. Noticeably less visible inflammation signs than the last time a month back or so. I felt normal cognitively yesterday (day 1 after), but my excrement was loose and slimy again, after consistently being healthy for weeks. Today it's the morning of day 2 which is when my POIS symptoms usually peak. Feel OK so far.

Muon

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Re: Mast Cell Activation Syndrome
« Reply #186 on: May 06, 2020, 09:53:59 AM »
At first he never accepted my theory about mast cells but later ordered seum tryptase test which was high.  But a baseline value could not be found because it was always high due to my constant triggers like fan air,showers, lack of sleep due to my lung problems.

Hi Aswinpras,
Sorry to hear about your situation. You are lucky Tryptase is elevated, then it's quite clear you are dealing with MCAD. What value did they measure? Generally speaking, increase in event-related tryptase is harder to capture than the baseline. What you have measured may actually be your baseline. Tryptase is correlated to mast cell load and not with disease activity which means that you may have MC infiltrates somewhere in your body (I will not be surprised when you have higher MC numbers in lung tissue).

Give this paper to your doctor:
Pharmacological treatment options for mast cell activation disease

This graph is great to have as a reference.
Here is another one See Figure 2.

Sexual-related activity could be placed inside the box at the top of this diagram as well. POIS may be a manifestation of MCAD in a subgroup of poisers. There is probably no golden bullet to treat it due to individual phenotypes, therapy is personalized.

« Last Edit: May 06, 2020, 10:26:27 AM by Muon »

Muon

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Re: Mast Cell Activation Syndrome
« Reply #187 on: May 06, 2020, 05:54:44 PM »
Steroid hormones during a flare:
CORTISOL *688.000 nmol/l 133.00 - 537.00
Aldosterone SERUM/PLASMA * 2210 pmol/l 61 - 970

Contributions of ACE and mast cell chymase to endogenous angiotensin II generation and leucocyte recruitment in vivo

"Conclusion
In vivo, Ang II is primarily generated by ACE under basal conditions, but in inflammatory conditions, the release of MCP amplifies local Ang II concentrations and the associated inflammatory process. Thus, AT1 receptor antagonists may be more effective than ACE inhibitors for treating ongoing Ang II-mediated vascular inflammation."




POIS ---> MC activation ---> Release of Chymase ---> Ang II-mediated vascular inflammation?

Nas

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Re: Mast Cell Activation Syndrome
« Reply #188 on: May 06, 2020, 06:29:38 PM »
Muon what do you think a valid treatment for POIS is if anti-histamines do not work? There doesn't seem to be many option for therapy and therefor we may never actually be able to ascertain any anecdotal proof?

drop247

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Re: Mast Cell Activation Syndrome
« Reply #189 on: May 07, 2020, 11:33:27 AM »
Has anyone tried Ketotifen? I'm thinking of asking my doctor for a prescription. It's a mast cell stabilizer and anti-histamine. I don't want to take sodium cromolyn daily and am looking for something to take only before O.

Nas

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Re: Mast Cell Activation Syndrome
« Reply #190 on: May 07, 2020, 03:40:29 PM »
Has anyone tried Ketotifen? I'm thinking of asking my doctor for a prescription. It's a mast cell stabilizer and anti-histamine. I don't want to take sodium cromolyn daily and am looking for something to take only before O.
I've tried ketotifen, didn't do much. Also Chromolyn Sodium cannot be absorbed into the blood stream, so I don't see how it can help us with brain symptoms.

Muon

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Re: Mast Cell Activation Syndrome
« Reply #191 on: May 08, 2020, 02:36:52 PM »
Muon what do you think a valid treatment for POIS is if anti-histamines do not work? There doesn't seem to be many option for therapy and therefor we may never actually be able to ascertain any anecdotal proof?

If there was validated treatment for POIS then you would not ask this question. My best guess is to interact with receptors on mast cells one by one. Like playing piano finding the right tone or combination of tones which may differ from person to person. But this is based on the assumption of mast cell involvement, that in itself may be part of a much wider spectrum.

If you want proof you will need to measure MC mediators via research in poisers vs healthy controls and I don't see that happening. I don't have a better answer for you. Here are some options: https://poiscenter.com/forums/index.php?topic=3236.msg33462#msg33462

Labyrinth

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Re: Mast Cell Activation Syndrome
« Reply #192 on: May 09, 2020, 02:17:14 PM »
That headache I experienced was totally unique.  Extremely heavy, crushing pressure in the middle of my skull.  Maybe there is no relationship...[/quote]

Yes I triggered the same spot by taking citalopram.

SSRIs high risk of mediator release:
Compilation of drugs associated with a high risk of release of mediators from mast cells and their therapeutic alternatives

~90% of brain mast cells are concentrated in the middle of your skull. Not sure where I did get that number from, perhaps it was in this video:
'Brain Allergy' and ASD - T. Theoharides, MD, PhD

In my case high ambient temperature + arousal can trigger a headache in that same spot. These are also potential MC triggers.
[/quote]

that makes sense , may be  it is all related to mast cells and inflammator mediators

what meds can stop these ast cells from running crazy ?!
« Last Edit: May 09, 2020, 02:22:26 PM by Labyrinth »
POIS of 10 yrs now

Labyrinth

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Re: Mast Cell Activation Syndrome
« Reply #193 on: May 09, 2020, 02:26:11 PM »
Muon what do you think a valid treatment for POIS is if anti-histamines do not work? There doesn't seem to be many option for therapy and therefor we may never actually be able to ascertain any anecdotal proof?

If there was validated treatment for POIS then you would not ask this question. My best guess is to interact with receptors on mast cells one by one. Like playing piano finding the right tone or combination of tones which may differ from person to person. But this is based on the assumption of mast cell involvement, that in itself may be part of a much wider spectrum.

If you want proof you will need to measure MC mediators via research in poisers vs healthy controls and I don't see that happening. I don't have a better answer for you. Here are some options: https://poiscenter.com/forums/index.php?topic=3236.msg33462#msg33462

I have high histamine levels , skin wheels and flares , easily deramtitis and eczema , all goes with high inflammatory mediators in blood
POIS of 10 yrs now

aswinpras06

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Re: Mast Cell Activation Syndrome
« Reply #194 on: May 11, 2020, 05:36:07 AM »
Dear friends

I am going to start omalizumab therapy from june15 for mastcell disease.  I am in a very bad state now with my lungs totally destroyed and on oxygen due to a rare lung disease called bronchiectasis which was probably caused by mast cell disorder.

If I get relief I will post the details of the therapy which most likely to work for pois too

In case you do not hear from me assume that it has not worked and probably I am in critical state or have passed away.  This forum is of immense help for me in understanding what is wrong with my health.  I have learnt a lot and received some excellent advices from many members.  But unfortunately it is too late and I missed my lung damage.

Thanks once again to all members and the admin of this great forum .  Muon  I thank you specifically for your great help and concern.  God bless you all.

Clues

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Re: Mast Cell Activation Syndrome
« Reply #195 on: May 11, 2020, 06:06:27 AM »
aswinpras06, I wish you the best! Will be thinking of you and hoping for a successful therapy!

Hopeoneday

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Re: Mast Cell Activation Syndrome
« Reply #196 on: May 11, 2020, 11:24:47 AM »
Hold on Aswinp... did you tryed pine nedles syrup or with hony? This is the first line for
bronchitis in my country... i dont know is it safe for you try and get some relief.
Dr-pois.

Nas

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Re: Mast Cell Activation Syndrome
« Reply #197 on: May 11, 2020, 04:05:30 PM »
Dear friends

I am going to start omalizumab therapy from june15 for mastcell disease.  I am in a very bad state now with my lungs totally destroyed and on oxygen due to a rare lung disease called bronchiectasis which was probably caused by mast cell disorder.

If I get relief I will post the details of the therapy which most likely to work for pois too

In case you do not hear from me assume that it has not worked and probably I am in critical state or have passed away.  This forum is of immense help for me in understanding what is wrong with my health.  I have learnt a lot and received some excellent advices from many members.  But unfortunately it is too late and I missed my lung damage.

Thanks once again to all members and the admin of this great forum .  Muon  I thank you specifically for your great help and concern.  God bless you all.
Stay strong Aswinpras! You can do it! There are many MCAS remedies for lungs and I have faith that Docotros will figure something our for you!

demografx

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Re: Mast Cell Activation Syndrome
« Reply #198 on: May 11, 2020, 05:24:06 PM »
Best wishes, aswinpras!
10 years of significant POIS-reduction, treatment consisting of daily (365 days/year) testosterone patches.

TRT must be checked out carefully with your doctor due to fertility, cardiac and other risks.

40+ years of severe 4-days-POIS, married, raised a family, started/ran a business

drop247

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Re: Mast Cell Activation Syndrome
« Reply #199 on: May 11, 2020, 06:54:09 PM »
aswinpras, do you happen to have IBS as well or any digestive problems? I wish you all the best.