My scleroderma helminth journey
My medical conditions and treatments
I am 58 years old and have had systemic scleroderma and myositis, along with Raynaud syndrome which was severe and made the cold unbearable. I have also had calcinoses on my fingertips, which caused painful ulcers, plus polyarthritis and gastric reflux.
The first thing I noticed in the beginning stages of scleroderma was a blue little finger and feeling more tired than usual. From there, I developed a red rash on my face, carpal tunnel in both hands and felt exhausted all the time. After having carpal tunnel release surgery, there was swelling in my hands which simply didn't go away. I was then diagnosed in 2010 and have been pretty lucky to have kept quite well and escape the worst outcomes.
I have had some hardened skin over the back of my hands and chest with a skin score of 16 (out of 50). Arthritis never worried me until 2018 with mild burning in my knees and shoulders. Myositis causes me the most problems, with weak muscles in the quads and biceps. My creatine kinase (CK) level, which is a measure of muscle enzymes/damage, was around 500. Normal is under 220.
I had regular flares of muscle weakness which sometimes meant that I couldn't get up our stairs without one or two rests. I began taking 7.5 mg prednisone daily to ease the severe fatigue that came along with the weakness, but eventually had to increase my dose to 30 mg a day. I would then wean down to 5 mg in continuous cycles of flares every 3 months.
I have been trialled on methotrexate, which helped, and have also taken Intragam P, which also helped. And I’m on medicine for the reflux and other symptoms of scleroderma, along with many other drugs that caused side effects. I used to call mercaptopurine my vomit pills, lol!
The type of scleroderma I have can result in very severe disease such as lung fibrosis and renal failure, and I do believe that immune suppression helped my disease stay mild at the beginning. But, for one reason or another, the doctors had to stop these drugs. Many of the immune suppressing medications have horrible side effects and don't actually reverse disease. Rather, they help stop it progressing or help with symptoms.
In spite of all the symptoms, I still managed to work for 20 hours per week, and danced in the evenings, although I needed a nap in the afternoon if I wanted to go out dancing.
The first nine months with helminths
My hookworm journey began in July 2018, when I applied 10 Necator americanus (NA) hookworms to my skin and began to feel a stinging itchy feeling 10 minutes after the patch was applied. I was so hopeful this was them burrowing and not my over excited and hopeful imagination.
In the first nine months, I took doses of between 5 and 8 NA every 3 months, and had an early positive response with skin softening and increased energy and muscle strength.
The skin softening continued, and was noticeable on my hands and face. I could drink from a drink bottle and suck through a straw, which was fabulous because scleroderma makes the skin thick and tight and the mouth cavity gets smaller. My Rosacea was totally gone, and finger nails were strong for the first time in my life.
As for muscle strength/weakness (myositis), it was difficult to know because I still got periods of weakness. But I didn't have to use high dose prednisone in the 9 months of hosting, which was a big change. Usually I needed to go up to 30mg every few months. I had got down to 5 mg a day but had a return of symptoms when I tried to reduce further than that.
I was not climbing any mountains but I was working and walking on the flat. And dancing without sneaking extra prednisone. Unfortunately I hadn't coped with an increase in workload and being on my feet for 5 hours a day. So... all in all, it was a cautious win on the myositis front. As for Raynaud's, I could definitely claim a big improvement there. Even when the temperature had dropped here in NZ, I was not getting much - just a faint blush of blue fingertips occasionally, but I had previously had a severe reaction to even a faint breeze, so subjectively I think it was 80% better.
Three years in
In September 2021, at 3 years into my hookworm journey, I'm trying to think of the good, the bad and the ugly so that you get a realistic idea of how things progressed for me.
After the first nine months, I began inoculating with between 15 and 25 NA every 3 months, and have continued with the improvements described above. The only time my muscles flare now is if I have taken antibiotics. Usually I am quite fatigued for a month to 6 weeks following abx.
I haven't needed to take increased doses of Prednisone in the 3 years of being on NA, except for needing a one-off dose during an antibiotic-induced myositis flare about a year ago. I want to be entirely honest about this journey!
My CK, which measures muscle damage, has remained in the normal range (under 220) for 2 years now, despite weaning Prednisone. My skin score is 4-6, down from 16.
I have managed to get down to 2 mg Prednisone daily which is amazing after 10 or more years on it! I have done this slowly over the last 18 months, but without very much effort or effect on my life. I like to live each day and keep up my dancing so have limited tolerance for putting up with too much weakness!
My lungs, whilst never too bad, have improved from borderline low to normal range in terms of lung function tests.
I don't nap in the day as much, still work 20 hours a week and walk 4 km a few times a week.
My Raynaud’s is still improving and muscle strength is pretty good consistently, although I still can't go uphill! My big issue now is calcinosis in my ligaments around my joints. This started prior to hookworm but it has got worse and I have pretty stiff joints now. But, at the age of 58, maybe I expect too much!
Currently no calcinosis or ulcers on my fingertips even though we have just been through winter, but I do still get this occasionally and have had some surgery.
Sometimes I get annoyed that I am not completely in remission, but, when this happens, my lovely family reminds me how far I have come!
I am so grateful for having found the online helminthic therapy community centred on the Facebook Helminthic Therapy Support group, and for the wealth of information that is gathered in the Helminthic Therapy wiki.
This week, I am about to add HDC (rat tapeworm larvae) to my existing NA for the first time. My goal is to come off the last 2 mg of Prednisone, completely resolve the Raynauds, reduce joint stiffness and walk uphill. I also want to soften the skin on my index fingers which are still tight and prevent me making a complete fist.
Wish me luck! I'll keep the group updated!
By Jane, September 2021. (Originally shared on Facebook )