My Treatment Regimen

Overview

Below is my current regimen for treatments for Sjogren’s Syndrome. As I add or remove treatment options, I will update this page. The summary of my treatments is listed below.

  • Prescription Medications
    • Restasis
    • Xiidra
  • Alternative Treatments
    • Helminthic Therapy, specifically necator americanus (hookworm)
    • Low-dose Naltrexone
  • Lifestyle Regimen
    • Autoimmune diet
    • Exercise
    • Sleep
    • Stress reduction
  • Supplements
    • Ubiquinol
    • Epigallocatechin gallate (EGCg)
    • Vitamin D
    • Vitamin K2
    • Fish Oil
  • Treatments I’ve put on hold or abandoned, but which may be useful to others
    • Turmeric/Curcumin
    • Modified Hannah Yoseph Protocol (from Chris)
      • L-Lysine, L-Proline, Glycine, L-Glutamine, and Vitamin C (ascorbic acid)
    • HDC (rat tapeworm)
    • Generic hydroxychloroquine (Plaquenil)

Prescription Medications

Restasis

Restasis is made up of small doses of cyclosporine, an immunosuppressant. It is FDA approved for the treatment of chronic dry eye. While the mechanism of action is not completely known, it is believed to inhibit T-cell activity that may damage the eye and cause dryness.

  • Evidence
  • Side Effects
    • Common side effects of Restasis include eye burning, redness, tearing, discharge, pain, itching, stinging, visual blurring, or feeling as if something is in the eye (source).
  • My Experience
    • Restasis was the first medication I took for Sjogren’s Syndrome, before I even know what SS was. It was prescribed by my optometrist for my initial dry eye.
    • My Schirmer’s test score jumped from ~4mm to ~20mm. I was able to continue wearing contacts for some time, until additional SS symptoms appeared.
    • Today, I cannot wear contacts, but I credit Restasis with the fact that I don’t need daily eye drops.

Xiidra

Xiidra was approved in 2016 by the FDA for the treatment of chronic dry eye. It has a different mechanism of action when compared to Restasis, but also serves to reduce inflammation that causes dry eyes.

  • Evidence
  • Xiidra was approved by the FDA in 2016 as the second prescription treatment for dry eyes, following successful phase 2 and phase 3 trials.
  • Side Effects
  • Common side effects of Xiidra include eye irritation or discomfort, changes in taste, and blurred vision.
  • Less common side effects include cough, discomfort or itching of the eyes, drainage from the eyes, fever, headache, pain or tenderness around the eyes and cheekbones, stuffy or runny nose, tightness of the chest, troubled breathing, watering of the eyes (source).
  • My Experience
    • At this point, I have used Xiidra for about 3 months (1 drop in each eye, twice daily).
    • I have experienced several side effects (burning, metallic taste, sinus congestion).
    • I haven’t noticed major shift in dryness, nor did my eye find a significant change, but my eyes in the morning seem to be less dry.
    • I had to fight with my insurance company to get coverage approved, but there is a program that reduces costs, including providing the first box for free.

Alternative Treatments

Helminthic Therapy

Helminthic therapy involves the use of of parasitic worms to treat various autoimmune conditions, including allergies, asthma, Crohn’s disease, lupus, irritable bowel syndrome (IBS), psoriasis, multiple sclerosis, and even autism. Available helminths include pig whipworm (TSO), human hookworm (necator americanus), human whipworm (Trichuris trichiura), and rat tapeworm (HDC).

For more information, see the section on helminthic therapy.

  • Evidence
  • Side Effects
    • Side effects include diarrhea, nausea, skin rashes, and fatigue. Most side effects for hookworm disappear within 1-2 months.
    • If side effects are severe, patients can eliminate the worms with an anti-helminthic drug.
    • The use of antibiotics and other drugs can reduce the effectiveness of helminths or kill the colony entirely.
  • My Experience
    • I have used both hookworms (necator americanus) and rat tapeworm (HDC).
    • Hookworms have had very beneficial effects for me, eliminating my neurological symptoms and reducing aches, fatigue, and dryness.
    • I tried HDC 3 times. It did not seem to help, but twice shortly after taking it I ended up in a flare.

Low-dose Naltrexone

Naltrexone is a generic medication that is normally prescribed for alcohol or opioid addiction, but there is reasonable evidence for it helping to moderate the immune system. Naltrexone requires a prescription, but can also be ordered online from other countries. It typically comes in 50 mg tablets, which are dissolved in 50 ml of distilled water.

  • Evidence
    • There are a variety of studies showing benefits of LDN for various autoimmune diseases, though nothing specifically for SS.
  • Side Effects
    • LDN side effects are often minimal and include temporary sleep disruptions and feelings of vertigo.
  • My Experience
    • I started LDN early in 2016, eventually using 3-4 mg/day
    • I noticed a small improvement in the quality of my sleep and my energy levels.
    • Unfortunately, I started having dizzy spells, a known side effect of LDN.
    • I am now on just 0.75 mg/day, which so far has worked for me.

Lifestyle Regimen

Autoimmune diet

There are a variety of autoimmune-related diets, including:

Note that the above links are not necessarily endorsements of any related books or other materials. The Internet has an abundance of information on diets.

  • Evidence
    • The links above contain some anecdotes and small studies, but there is little solid scientific evidence for diets influencing autoimmune diseases.
    • This US News article is slightly out of date, but still outlines the current state fairly well.
  • My Experience
    • I began with the autoimmune protocol, eating a very limited diet and slowly adding foods back in to determine what triggered my symptoms.
    • My current diet has is closest to the perfect health diet outlined above. I completely avoid gluten and dairy. I try to avoid processed foods, sugar, and soy. I generally focus on rice, vegetables, fruit, lean meats and fish, and olive oil. Also the occasional mexican food with corn.
    • I know that dairy tends to throw me off, and the other foods I avoid do to a lesser degree. I feel that my diet helps give me more energy and avoid flares.

Exercise

I wrote a blog post about the advantages and challenges of exercise that I encourage you to read. In short, without pushing yourself too hard, exercise is good for you.

  • My experience
    • I try to do a minimum of 30 minutes of exercise a day, primarily biking and elliptical. On bad days, I will shift to walking. Ideally, I do my exercise outdoors, as I find that fresh air and sunlight at least raise my spirits, and potentially improve my health. I’m also working to integrate some stretching, yoga, and breathing exercises.

Sleep

Rest is good for you. I try to get at least 7 hours of sleep per night. The Sjogren’s Syndrome Foundation has some good tips on getting adequate sleep.

Stress Reduction

If there is one thing I’m fairly confident of, it is that stress triggers flares. I believe that my dramatic increase in symptoms a few years ago was due to a particularly stressful period in my life, and research backs this belief. As a result, I try to reduce the stress in my life as much as possible by living within my means and not taking major risks that could introduce significant stress into my life.

Supplements

There are an overwhelming number of supplements available. Most of these have little to no data, and as a result, I’m fairly skeptical. There are a few supplements I have decided to take, however, based on the limited evidence available. Supplements are poorly regulated. As a result, I try to use supplements that have been evaluated by an outside agency, such as GMP, so I can be sure I’m not eating sawdust.

Note that I have linked directly to the specific supplements that I use; I am not endorsing the particular brand nor am I receiving any financial incentives for the links I have posted. I encourage readers to do their own research.

Ubiquinol

I learned about Ubiquinol through a forum post. It is a naturally occurring enzyme that we get in small doses through our food. I didn’t find a lot of solid evidence linking SS with Ubiquinol, but it was cheap, had no real side effects, and several of the forum members noted reduced dryness, increased saliva, and reduced fatigue, so I figured that I had little to lose by trying it. So far, it may be helping a little bit with my mouth dryness. I take one 200mg tablet daily.

  • Cost: ~$35 for 120 tablets (200mg) at Costco.

Epigallocatechin gallate (EGCg)

EGCg is a chemical commonly found in green tea. Early research has found it to have beneficial effects on mediating the autoimmune system. I take 400mg daily.

  • Cost: ~$13 for 180 capsules (400mg) on Amazon.

Vitamin D

There has been considerable research on the effect of vitamin D and autoimmune diseases. When I first suspected Sjogren’s Syndrome, my vitamin D level was borderline low, despite my regular exposure to sunlight. As a result, I now take 15,000 IU daily.

  • Cost: ~$12 for 240 capsules (5,000 IU) on Amazon.

Vitamin K2

Vitamin K is believed to be an important balance to vitamin D, which has a known effect on autoimmune diseases. It also has its own health benefits and is thought to be low in many people . As a result, I now take 15,000 IU daily.

  • Cost: ~$9 for 100 capsules (100 mcg) on Amazon. Also available as the slightly more expensive and more bioavailable MK-7 form.

Fish Oil

There is some scientific evidence that omega-3 oils can improve dry eye symptoms. As a result, I take 1000mg daily. Make sure you look for a brand that reduces mercury content.

  • Cost: ~$11 for 400 softgels (1,000mg) at Costco.

Treatments I’ve put on hold or abandoned, but which may be useful

Turmeric/Curcumin

Evidence

  • There is some solid research that curcumin, an anti-inflammatory agent in turmeric, can reduce the inflammatory symptoms of various autoimmune diseases. I recommend a brand that is formulated for easy absorption. I used to take 100mg/day, but stopped due to possible interactions with helminths. You should not take turmeric/curcumin if you are hosting necator americanus.

My experience:

  • Might have been helping, but not compatible with my helminthic therapy

Cost: ~$25 for 180 capsules (100mg) on Amazon.

Rat tapeworm (HDC)

  • Evidence
    • As mentioned in the helminthic therapy section above, there is significant evidence as to the value of HT, particularly the human hookworm necator americanus (NA).
    • HDC is the newest helminth to be used for therapeutic purposes, and has the least supporting research.
  • My Experience
    • I have tried HDC four times, at doses of 10, 20 (x2), and 30.
    • The first dose of 10 HDC caused almost no reaction that I could tell.
    • The following three doses of 20 and 30 HDC all lead to symptom flares of varying intensities.

Modified Hannah Yoseph Protocol

This was based off of the success that a forum member named Chris found in treating his symptoms. The protocol is made up of 1 teaspoon of 5 different powders, though I have reduced the ascorbic acid dose due to possible long-term complications. If I continue, I may go with Vitamin C tablets.

For more information, see my blog post.

  • My experience
    • After 5 months of religiously following this protocol, I noticed no improvement. When I stopped the protocol, I didn’t notice any increase in symptoms.
    • See this post for more information.
  • Cost:
    • L-Lysine – ~$14 for 500g on Amazon.
    • L-Proline – ~$30 for 500g on Amazon.
    • Glycine – ~$24 for 1kg on Amazon.
    • L-Glutamine – $28 for 1kg on Amazon.
    • Vitamin C (ascorbic acid) – ~$20 for 1kg on Amazon.

Medical Marijuana/Cannabidiol (CBD)

More states and countries have legalized marijuna, particularly for medical purposes. CBD is the most promising component for medical treatment, and has few side effects.

For more information, see these blog posts (1 2 3). Those looking for reliable vendors should review the CBD subreddit.

  • Evidence
    • There is limited research, but the available studies (lab and limited clinical trials) show promising results at high doses
  • Side Effects
    • CBD side effects are limited.
    • If using a general cannabis treatment containing THC, side effects include dry mouth, dizziness, anxiety, and a lack of motivation.
  • My Experience
    • I tried doses ranging from 10-40mg, 2-3 times per day.
    • I found it to be somewhat relaxing, with mixed results on my sleep patterns.
    • I did not find SS symptom or inflammation relief, possibly due to the high doses necessary.
    • Due to the cost and lack of significant relief, I stopped using it.

Generic hydroxychloroquine (Plaquenil)

Hydroxychloroquine is an antimalarial drug created during World War 2. It was discovered to have immune-moderating effects, and has been a mainstay of autoimmune disease treatment for decades.

  • Evidence
    • The scientific evidence for hydroxychloroquine and SS is mixed. It was approved for lupus in 1955, but has not been FDA approved to treat SS, a related disease.
    • While some studies (1999, 2013) have shown benefits for SS patients, other studies (2014) have not.
    • Anecdotal results show a wide variety in helpfulness, ranging from some patients with significant side effects, to those with no benefits, moderate benefits, and significant benefits (Drugs.com, rxlist.com, DailyStrength, Ask a Patient).
      • The most common benefits seem to be related to reduced joint pain and fatigue.
  • Side Effects
    • Possible side effects include gastrointestinal issues, dizziness, hair loss, and others. Most side effects abate over time.
    • In cases of long-term use, hydroxychloroquine can cause permanent retinal damage. Though rare (sjogrens.com, 2014 study), with incidences estimated at 0-4% of users, the risk increases over time and with larger doses.
  • My Experience
    • I started on hydroxychloroquine at 400 mg. After 1 year, I dropped to 300 mg, then to 200mg about 8 months later. This was to reduce my risk of retinal toxicity.
    • I believe that it has had a moderate improvement on my joint and muscle pain. Perhaps a minor improvement for fatigue. Little to no improvement in dryness.
    • Unfortunately, I was taken off hydroxychloroquine after 4 years due to the risk of eye damage.
  • Lyn Jolly

    Hi Luke. Great to see this resource has undergone so much development. And how at you doing these days?

    • whatyousjo

      Hi Lyn,

      Thanks for the encouragement. I’m doing reasonably well I suppose. I feel like I’ve improved to a degree since my diagnosis was made 2.5 years ago after I started HT, Plaquenil, and my diet. I still have a mix of good and bad, but I’m probably around 8 out of 10 most days. Good enough to continue working and living a fairly normal life with some adjustments.

      How about yourself?

      • Lyn Jolly

        I would give myself an 8 out of 10 most of the time as well. I have developed Hashimotos about 6 months ago, so I am now on LDN as well (you still on this?), and I am hopeful I can stop this medication in time, the blood tests are going in the right direction. I am gluten free, and do yoga, working 6 hours a day. As long as I am careful I can do most things. I went to Morocco last year and plan to go to Peru this year. Overseas trips would not have been possible 3 years ago, with HT making a very big difference, so I am very appreciative of this. No magic bullets though unfortunately

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