Rapamycin for autoimmune diseases like APS

Antiphospholipid syndrome (APS) and other autoimmune diseases

Has anyone used Rapamycin for the treatment of autoimmune diseases?
In theory, it should be effective by acting immunosuppressive on the body.

My close family member (a 65-year-old woman) was diagnosed with APS about 12 years ago. Since then, she has been taking the following medications:

  • Acenocoumarol 3 mg, for blood thinning
  • Chloroquine phosphate 250, an antimalarial drug used for rheumatologic pain
  • Rosuvastatin 10 mg, a statin for cholesterol
  • Levothyroxine 75 mg, for thyroid

But despite this, the disease is progressing. She has already undergone 3 vein-stenting surgeries (including endarterectomy of the artery). She also had one mild stroke.

Generally, she feels good after the surgery, but her condition gradually worsens and after about 2 years, the procedure needs to be repeated because of the re-occlusion of the arteries.

She asked her treating doctor and surgeon about Rapamycin, but they said they are not familiar with the drug and have not used it on their patients.

I found information online that there are successful trials of Rapamycin use for APS. The usual dosage is 1 mg per day.

What do you think about this?

Due to the lack of willingness on the part of the doctors, and the desperation of my friend, we want to try using Rapamycin on our own for 1 month. After that, we will do a full blood test to check if it helps and if there are no side effects.
(APS is detected through antiphospholipid antibody tests in the blood.)

Any consideration?

Thanks for help,


Antiphospholipid syndrome (APS), sometimes known as Hughes syndrome, is a disorder of the immune system that causes an increased risk of blood clots . This means people with APS are at greater risk of developing conditions such as: DVT (deep vein thrombosis, a blood clot that usually develops in the legs.

  1. Sirolimus monotherapy confers good efficacy and tolerance for TP in primary APS patients and therefore may be considered as a first-line therapy.

  2. Patients treated with sirolimus following renal transplantation for APS nephropathy had a higher graft survival and function.

  3. Treatment with the mTOR inhibitor sirolimus was initiated in this patient. Complete remission (CR) was achieved after 6 months, and flare-free remission was maintained for the next 3.5 years.

  4. receiving sirolimus had no recurrence of vascular lesions and had decreased vascular proliferation on biopsy

  5. The triple therapy with thrombolytic agent, rituximab and sirolimus in refractory CAPS should be considered in uncontrolled patients who had extensive clot despite pulse methylprednisolone, plasma exchange and anticoagulant.


When it comes SLE they have had som success with NAC.

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