Wegener’s/GPA

[deborah dunn]

HPI: 40-year-old female, G2P0, US born  successful CEO of multiple US/International companies born via vaginal birth to substance abuse mother. Raised by father in midwest in small town without occupational exposures. Childhood significant recurrent ear infection treated with abx. Large sugar consumption throughout life. Had a history of migraines, bulimia, laxative abuse, depression and anxiety. Veneers at age 24 for childhood abx staining.

2015: Amalgams removed
2018: Significant procedure to correct dental implants. One month later..unrelenting sinus symptoms
2018: ENT diagnosed 3 antibody positive ENT limited GPA- sent to Rheumatology at Mayo. 4 rounds of Rituximab.

4/2022: Extraction of tooth;zirconi implant
5/2022- Relapse. Sinus symptoms, HA, tinnitus, Tooth pain(negative exam), Moves to new residence,
9/2022: ENT visit- new perforation representing expansion of GPA prescribes Prednisone 10mg 4 qam. Budesonide nasal Trimethoprim sulfamethoxazole for nasal staph infection . Lungs/kidney clear.

1/2023: Panama for BMAC stem cell IV
3/2023: First meeting  with me and desires health optimization; off Prednisone, scheduled for Rituximab in March. Desires to be off meds; minimize flares

Diet: Has organic chef; raises vegetables, paleo- grass fed meats, has her own chickens. Intermittent fasts.

Exercise: Yoga, Meditation, trainer with weights, not enough energy for HIT. Must nap each day.

Relationships: supportive and positive. Spiritual connections strong.

Stress: under control and not significant: Unloaded stressful companies and now focusing on health.

Dental: Does not floss, brushes with traditional tooth brush. Sees biological dentist.

Sleep: no metrics, but no complaints

Hormones: Regular menses without difficulty.

GI: denies issues. long history of laxative abuse.

Neuro/mood: denies issues with cognition or irritability

CURRENT ROS:
Hands falling asleep;tingling.
Mild fatigue
Nose bleeds
Nasal Septal Perforation
Mild unilateral hearing loss
Night sweats
Migraines
Tinnitus

 

Questions for the group:

Interested in the step wise strategy of modulating immune function and halting progression and optimizing mitochondria. Any tests you would do other than looking at GI, micronutrients,complement and some oxidative markers in this fragile patient?( she has over 800 pages of notes from hospitals, physicians, dentists etc)

It seems like oral was the infectious trigger..how do we manage cleanings etc? Is there any tests looking at those body burden of microbes.   Concerned about triggering her neutrophils.

Which peptides might you start first and how gentle would you go? She can go to Mexico and get Zadaxin. Has anyone used a source in Mexico. Could she qualify here?

Thank you all for your help for this very sweet and dynamic woman.

 

 

[Kristelle Reyes]

Hello @drkriswyahoo-com, @byurthgmail-com, @dr-siobhannewmangmail-com, and @andkeller2gmail-com, we would love to have your insights here. Thank you! 🙂

[Abid Husain]

Thanks for presenting this case.  With a high LL37 level ( was that a serum measurement?) that points to inflammation and possible infection of mucus barriers, ie gut or lungs.  Any gut testing or sputum cultures?

I would consider hitting her with multiple peptides but very gently.  The focus is modulating the immune system.  Gentle introduction of peptides should keep from causing any exacerbations.  BPC injectable 500mcg daily and Thymulin 1gm SQ daily at a minimum.  Start with BPC and add thymulin after 2 weeks.  I think anything that will help increase nitric oxide would be helpful, that would include TB4.

Patients with this and Kawasaki’s have high amounts of mitochondrial DNA fragments detected in the serum.  The belief is that may be triggering NLRP inflammasome activation and then an autoimmune cascade. Malfunction in mitophagy would be a cause.  So stimulating improved mitochondrial function and mitophagy would seem to be beneficial.  I’d consider looking into MOTS-c and SS-31.

Looking at other autoimmune modulating agents, I’d consider low dose naltrexone.  There is a study recruiting patients with vasculitis for treatment with LDN, so it is being considered no data in that population specifically.  From a senescence standpoint, you could use a senomodulator like rapamycin at 5-6mg once weekly to start and increase.

There are a lot of options but I’d start with the basic reliable peptides like BPC and Thymulin.  Then layer in the mitochondrial peptides.

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4469165/

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC9592088/

Hope this helps!

Abid

[deborah dunn]

Thank you so much Abid! Makes alot of sense.

Thoughts on ARA-290 specifically through the lense of the macrophage?

. Some animal research on decreased macrophage activation, decreased NF-KB, decreased TNF-α and  increasing vascularization into damaged tissue.

Watanabe, Masaaki et al. “A Nonhematopoietic Erythropoietin Analogue, ARA 290, Inhibits Macrophage Activation and Prevents Damage to Transplanted Islets.” Transplantation vol. 100,3 (2016): 554-62.

https://www.pnas.org/doi/full/10.1073/pnas.1214099110

doi:10.1097/TP.0000000000001026https://www.sciencedirect.com/science/article/pii/S0041134518302501

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