French Rheumatoid Arthritis Patient Meets East
Hi, My name is Nathalie Barbé
I do my best to bring you accurate and updated knowledge about the plant called Thunder God Vine (Tripterygium wilfoordii Hook F. TwHF or Lei Gong Teng in Chinese) and its indications in Rheumatoid Arthritis and in other autoimmune disorders.
Thunder God Vine in the form of medicinal root extracts developed in the 1970s in China is cheap and usually more effective and safe than conventional immunosuppressants.
As you know, managing an autoimmune condition often means seeing one’s income reduced because working is made difficult or impossible.
And in the same time, autoimmune treatments can be very expensive. So how is it even possible to survive without a welfare state, a health insurance, or with a health insurance but too much left to pay ? As a result, in many places in the world including the richest, having an autoimmune condition means facing extreme survival and enduring a lot of pain.
My goal here is to give access to the available information about this plant medicinal extract and its uses so anyone can make their best informed decisions if considering taking it.
Long Story Short
My Blue Pillbox is about the plant named Thunder God Vine also known as Lei Gong Teng or Tripterygium Wilfordii (TwHF).
In China, it was considered an efficient but rather toxic treatment until the 1970s when research developed 2 medicinal extracts that are well tolerated. One of these extracts is in use extensively from the 1980s on (almost 40 years) to treat Rheumatoid Arthritis and a number of other autoimmune disorders.
I am taking medicinal Thunder God Vine medicinal since September 2015 and have stabilized my autoimmune condition which is Rheumatoid Arthritis (RA) quite successfully. My actual situation (September 2020) is remission since April 2016, so that’s now 4 years.
I use the plant in the form of tablets of medicinal extract considered the most effective and safe form available nowadays that you will find discussed in most pages of this website. This extract is often referred to as T2 extract in clinical trials. A Chinese physician helped me with this. I am also followed by a Rheumatologist for my regular blood tests and checkups where I live, in Bangkok, and in Paris once or every other year.
The relief and getting my life back made me want to share my experience and the knowledge I have gathered about this existing option.
Long Story Long
I am a 52 years old French expatriate living in Asia (Bangkok, Thailand) since September 2014 with my husband and daughter. My Rheumatoid Arthritis was diagnosed in Paris in May 2014. After several painful episodes, the lab results came back positive to RF and to anti-cyclic citrullinated peptide (anti-CCP) with a skyrocketing CRP.
I will forever remember the look in my rheumatologist’s eyes. I immediately understood that having a normal life is a party. My party was over.
Then she explained my options and possible future depending if I was lucky or not. Eventually, I had a life threatening, painful, crippling and impossible to cure disease. Treatment would involve lifelong heavy and dangerous medication.
——This is my story——
It is not different or worse than many. I will not speak for others, every experience is so personal and different.
Back then, Rheumatoid Arthritis changed my life in a terrifying way. It crippled my body and my energy, cursed many days with pain and anxiety for the future, took from me good things that I loved to do and destroyed my confidence. It also made me cry many times with anger, fear, frustration and despair and left me so desperate with the pain.
——My first treatment ——
Methotrexate is the first intention drug in France for Rheumatoid Arthritis. So I started with Methotrexate tablets which made me sick. Soon with injections I did myself weekly at 15 and then 20mg which is the maximum dose when injected in my home country.
It did help a lot with the pain even though it didn’t completely suppress it. I was never able to go lower than 3mg Prednisolone per day and additionally used painkillers (Naproxen). I was experiencing morning stiffness, daily tender joints and a lot of exhaustion. Another side effects of Methotrexate for me was nausea especially the 4 days following the injections.
——I threw it all away !——
If I could, I would undo that and I would first call my rheumatologist then stop. It was just before our summer holiday in the beginning of July. I did see my rheumatologist in Paris the next week. After I told her I had stopped injecting myself, she said Ok ! be prepared to suffer. She prescribed another DMARD (disease-modifying anti rheumatic drug) called Arava, more Prednisolone and painkillers although I told her I had no intention to take this new drug.
10 days break, no more nausea and crippling exhaustion giving way, tremendous relief, it was feeling so good. Then of course, it started hurting again… Back on Prednisolone and painkillers, I limited myself to not go on more than 10mg/day Prednisolone. I spent many bad days in bed at my mother’s house that summer but still found the situation more tolerable than the idea to go back on Methotrexate or to try Arava which is not available in Thailand.
——Trying Thunder God Vine with the help of a Chinese physician——
I spent a lot of time on the internet and read studies, blogs, forums about Rheumatoid Arthritis and autoimmune diseases in general. Then I started collecting bits of everything about alternative and complementary treatments. That’s how I learned about medicinal Thunder God Vine, through clinical studies mostly.
As a matter of fact, Methotrexate is the only Western style medicine available in Thailand for Rheumatoid Arthritis patients. China is not very far, so back after that painful summer holiday, I started searching for a physician knowledgeable about RA and medicinal Thunder God Vine, and willing to take care of me. The alternative was organizing a complicated medication importation from France or otherwise getting back to my previous life by moving back to France. And that’s how it all started.
——What happened ?——
It helped me stabilize the disease activity at a very low level.
I stared on the lower base dose of 1mg/kg/day. During the first 20 days I experienced nothing, which is not unusual. My Chinese doctor said it would take 4 weeks to 5 weeks to start noticing something. I was in a LOT of pain. After noticing no improvement, my physician put me at 1.5mg/day.
That’s when, after 10 days or so something happened: I slightly got better in a way I had not experienced before. That’s when I started rating on ten points how I felt.
- 5 when I stay at home with a minimal activity and 4 or more affected joints.
- 7 and 8 when I can go out and do errands and have 2 or 3 joints affected.
- 10 is before it all happened.
I also have noted how I lowered the Prednisolone dose and put it all in an Excel sheet to study the improvement day after day. I wrote an article using this data in the Blog section, you can read it here : Three years taking Thunder God Vine.
——The Thunder God Vine dose needed adjustment——
Today (September 2020) my RA takes 1,5mg/kg/day of Thunder God Vine (I weight 67kg, so that’s 100mg daily = 10 X 10mg tablets). With Prednisolone 2,5mg/day (we only have 5mg tablets around here, to split in 2) and no painkillers.
——I am now on what can be qualified as a very low disease activity——
Today (September 2020) after 4 and a half years of treatment, my condition is very good, around 9,5 but more usually 10/ 10. I consider myself in a remission (low disease activity) since April 2016. But things have kept improving even further the 6 following months and even more after that. Most of the time I have no symptoms at all and hardly remember what it used to be like. All symptoms resumed over time, some quicker than others. My last CRP (C-Reactive Protein) is a 0,81 which is low and my liver / kidney / blood cell counts are all in the normal range. I experience minor or no side effects. This aspect is detailed in the following page : My Thunder God Vine Personal Experience.
In 2019, I started exercising again because I was gaining weight. Thailand is really hot and humid and it’s not easy to stay fit for me here because it’s uncomfortable to walk outside and I’m not fond of exercising indoors. The best I found was to walk 1 hour on a daily basis on a 10% inclined treadmill. I maintain my heart rate at 60 to 85% of my maximum which is 145bps during the period. It can be considered vigorous exercising. I found cycling and swimming are great too.
During the confinement following Covid19, the gym was closed. Since then I have a new routine in the morning by running and exercising outside during 45 minutes and I think I’ll stick to that for some time. I feel great, have lots of energy.
When I look back, I would say RA can be compared to a major internal invisible physical trauma. It takes a LOT of time to recover fully.Although I know I am NOT without RA and know for trying that symptoms will resurface if I stop my medication.
When it comes to diet, I eat of everything and avoid industrial processed food (always have actually). In the WE, I like wine or a beer when the sun goes down. I am glad I can enjoy it again since I stopped Methotrexate. I am also able to wear high heels which I never imagined would be possible again. I know it sounds stupid, but it’s one of those things that make a difference, making me feel I was back from wearing only sneakers for the rest of my life. The fear of shaking hands and stories I told to avoid them are a distant souvenir too.
To qualify my present treatment I would say this : more efficient than Methotrexate without the adverse effects. My Chinese doctor says that if I tolerate it, I can continue to take this medicinal extract with equal benefit. I have my life back and try not to get used to the idea just in case. As we learn on the way, some medications do the job for a while and then just stop.
My Thunder God Vine personal experience : The account of the drugs and doses I took, benefits and side effects I experienced until today.
Three years taking Thunder God Vine : The account of my beginnings with medicinal TGV, from a more clinical point of view.
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