Author Topic: POIS successfully treated with Omalizumab  (Read 2324 times)

Muon

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POIS successfully treated with Omalizumab
« on: September 01, 2023, 03:26:24 AM »
Article
04 October 2023: https://onlinelibrary.wiley.com/doi/10.1111/imj.80_16230

Youtube:
August 23 2023: POST-ORGASMIC ILLNESS SYNDROME SUCCESSFULLY TREATED WITH OMALIZUMAB

Use a youtube downloader to download and watch the video.

NSAIDs, high dose antihistamine therapy and SSRIs were considered ineffective.
Treatment: 3 months of therapy with 300 mg Omalizumab every 4 weeks. Symptoms: Nausea and cognitive symptoms. Patient had improvement of symptoms 3 days after start of therapy. Dose was increased to 450mg for 4 weeks after the effect wore off at day 10.

Dr. Talia James (1,2), Elizabeth Klinken (1,2) and Andrew McLean-Tooke (1,2,3):

1) Pathwest laboratory medicine, QEII medical centre, Nedlands, Western Australia
2) Clinical Immunology, Sir Charles Gairdner Hospital, QEII medical centre, Nedlands, Western Australia
3) Clinical Immunology, Perth Children’s Hospital, QEII medical centre, Nedlands, Western Australia

https://en.wikipedia.org/wiki/Omalizumab#Mechanism_of_action
« Last Edit: October 09, 2023, 05:35:57 AM by Muon »

Muon

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Re: POIS successfully treated with Omalizumab
« Reply #1 on: September 01, 2023, 07:46:32 AM »
The reason she tried it is because desensitization works in some cases and antihistamines were ineffective. The high affinity receptors for IgE are downregulated on the cells you mentioned not the cells themselves. Omalizumab is used in MC disorders as mast cell stabilizer when other MC stabilizers fail to be effective. Can we move the discussion to this thread? https://poiscenter.com/forums/index.php?topic=4412.0
Ok, thanks.  I just checked and it seems that omalizumab has been used "off label" for MCAS for some time now ( https://pubmed.ncbi.nlm.nih.gov/30954641/ ).   

Muon, you seem to know who "T J" is, and where is here clinic.  Am I right ?

No I don’t know who TJ is. Someone on reddit linked this video (thanks for that). It seems like those are the initials of Dr. Talia James. You can check where she is working at in Australia on the first slide of the video presentation. Someone should contact her with regards to the list of doctors on poiscenter.

Muon

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Re: POIS successfully treated with Omalizumab
« Reply #2 on: September 09, 2023, 06:26:28 PM »
New insights into the utility of omalizumab (2019)
https://www.jacionline.org/article/S0091-6749(19)30111-3/fulltext

Antiviral effects
« Last Edit: September 09, 2023, 06:28:50 PM by Muon »

less_fogged

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Re: POIS successfully treated with Omalizumab
« Reply #3 on: September 11, 2023, 10:37:45 AM »
August 23 2023: POST-ORGASMIC ILLNESS SYNDROME SUCCESSFULLY TREATED WITH OMALIZUMAB (T J)

Use a youtube downloader to download and watch the video.

NSAIDs, high dose antihistamine therapy and SSRIs were considered ineffective.
Treatment: 3 months of therapy with 300 mg Omalizumab every 4 weeks. Patient had improvement of symptoms 3 days after start of therapy. I will add this to the pois paper treatment thread.

https://en.wikipedia.org/wiki/Omalizumab#Mechanism_of_action

Very interesting case report !
Sadly, they do not share how they came to decide to try omalizumab ( Xolair) for POIS.  It is an allergic asthma treatment, and also treats urticaria (hives). The patient's symptoms were nausea and a decline of cognitive functions, starting 5 minutes after O, and his blood tests were normal, so I wonder how the immunology department came to this decision.

Xolair works essentially by depleting free IgE antigens. so that basophils, mast cells, and dendritic cells are gradually down-regulated.  This case report goes in line with the last article of the late Dr. Waldinger, that POIS is an auto-immune disorder.

Has anyone been able to get hold of the article from the youtube video using omalizumab ( Xolair) for POIS ?
I wish I could test this medication seems promising but expensive.
Used by injections. The standard price for one of these injections costs more that 200euros or even close to about 250euros. Medical healthcare pays most of it back here in my country for those suffering from severe asthma. But if you have POIS then you must pay the full amount!  Part of our problem is that we still don't have a proper diagnoses for POIS.
A Proper diagnoses would be such an advantage and this alone does not seem fair. Many people get help with their illnesses from government, but if you have POIS everything is cut down and often left in the dark with administration. My doctor recognises that I have POIS but can not organise me all the benefits that I'd normally be entitled to get because of these administrative issues with POIS! :(

less_fogged

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Re: POIS successfully treated with Omalizumab
« Reply #4 on: September 11, 2023, 10:58:23 AM »
To be more specific about pricing here for Omalizumab (Xolair) injection.
If I'd try this it would cost me €234 per injection.
According to my doctor it seems one would probably needs 2 injections at a time every 2 to 4 weeks.
I doubt many people would be able to pay this as things stand now.

I guess if the company that produces these injections can come up with the correct documentation to prove that it can be used to help POISers then it will also be in their interest for their sales because that's when the government participates to pay the biggest share of the cost for POISers here.
 

less_fogged

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Re: POIS successfully treated with Omalizumab
« Reply #5 on: September 11, 2023, 11:21:08 AM »
I found a link on the net where you can see doctor Talia James mentioned where she was at a conference as speaker in Australia for POST-ORGASMIC ILLNESS SYNDROME SUCCESSFULLY TREATED WITH OMALIZUMAB.
Her name is listed on page 30 Poster number 81.

https://www.allergy.org.au/images/docs/conf2023/ASCIA2023_PROGRAM_BOOK_FINAL.pdf

Muon

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Re: POIS successfully treated with Omalizumab
« Reply #6 on: September 11, 2023, 12:37:35 PM »
There is no article, only a video. We need doctors to write case reports if they have treated a patient with POIS successfully.

Muon

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Re: POIS successfully treated with Omalizumab
« Reply #7 on: October 09, 2023, 05:37:41 AM »
There is no article, only a video. We need doctors to write case reports if they have treated a patient with POIS successfully.
Article has been added: https://onlinelibrary.wiley.com/doi/10.1111/imj.80_16230

Muon

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Re: POIS successfully treated with Omalizumab
« Reply #8 on: October 22, 2023, 08:23:19 PM »
https://www.reddit.com/r/MCAS/comments/uf6pvv/it_seems_having_orgasm_was_one_of_the_culprits/i6s0kln/

"It seems having orgasm was one of the culprits. After realizing I have histamine intolerance I started experimenting and finally realized that having orgasm trigger histamine problems for me. I was diving into old mcas forums and saw some People feel what ?m saying. Whenever I have sex I feel like I've ate sauerkraut. How many of you experienced something like this? LOVE"

"I have that problem. It was pretty severe, to the point that I almost used epi several times. Xolair seems to have reduced my reactions to orgasm, so that now I usually just get runny nose and cough. I still have to avoid anything really intense and can't have multiple o's without my throat swelling shut"

Muon

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Re: POIS successfully treated with Omalizumab
« Reply #9 on: January 31, 2024, 10:07:56 AM »
Salivary IL-8 and sTREM-1 in chronic urticaria: A diagnostic test accuracy study

"Salivary soluble triggering receptor expressed on myeloid cells-1 (sTREM-1), but not IL-8, levels may be indicative of response to omalizumab therapy."

Progecitor

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Re: POIS successfully treated with Omalizumab
« Reply #10 on: February 03, 2024, 12:26:02 PM »
Malondialdehyde (MDA) as a Potential Oxidative Stress Marker for Allergy-Oriented Diseases: An Update
Various studies have examined different methodologies for measuring MDA in this sample, including serum, erythrocyte and lymphocyte MDA levels (S-, E- and L-MDA).
Specifically, Houseen et al., through a 4-week oral treatment with boswellic acid, curcumin and liquorice in addition to inhalation therapy with inhaled corticosteroids (ICSs) and beta2-agonists, achieved a significant reduction in S-MDA levels compared to the placebo group. A similar reduction in S-MDA levels was described by Yalcin et al. in asthmatic patients after biological treatment with omalizumab.

https://www.mdpi.com/1420-3049/28/16/5979
The cause is probably the senescence of sexual organs and resultant inducible SASP, which also acts as a kind of non-diabetic metabolic syndrome.