My journey with Rheumatoid Arthritis

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 it’s indications in Rheumatoid Arthritis and in other autoimmune disorders. If you wish to read further, sources are cited or linked at the end of each post.

Thunder God Vine in the form of medicinal root extracts (T2) developed in the 1970s in China is cheap and usually more effective and safe than the commonly prescribed DMARDs for Rheumatoid Arthritis.

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 using it.

Long Story Short

My Rheumatoid Arthritis Journey in China

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 2 medicinal extracts were developed 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 Thunder God Vine medicinal extract since September 2015 and have stabilized my autoimmune condition which is Rheumatoid Arthritis (RA) quite successfully. My actual situation (April 2018) is remission since April 2016.

I use the plant in the form of tablets of medicinal extract considered the most effective and safe form available nowadays. This extract is often referred to as T2 extract in clinical trials. A Chinese physician helped me in this practice. I am also followed by a Rheumatologist for my regular blood tests and checkups where I live, in Bangkok.

The relief and getting my life back made me want to share my experience and to raise the awareness of this existing option. My experience is very good, as you will read in the next part down this page.

Long Story Long

My Rheumatoid Arthritis Journey in Bangkok

I am a 50 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. 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 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 15 days up to 4 weeks to start noticing something. I was in a lot of pain.

Then, something happened: I slightly got better. 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 overview.

——The Thunder God Vine dose needed adjustment——

Today (April 2018) 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 3,75mg/day (we only have 5mg tablets around here, to split in 4) and no painkillers.

——I am now on what can be qualified as a very low disease activity——

Today (April 2018) after more than 2 years of treatment, my condition is very good, around 9,5 to 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. 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.

I do sports sometimes, and am even able to run which I though would never be possible again, although I feel cycling and swimming are the best. I can also walk for hours with pleasure under the tropical sun when it’s not too hot. Whenever I feel I’m doing too much I try to rest and sleep more.

When it comes to diet, I eat of everything but avoid industrial processed food (always have actually). In the WE, I like wine or a beer when the sun goes down and am glad I can enjoy it again since I stopped Methotrexate.

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.

 
A Rheumatoid Arthritis Journey with My Blue Pillbox

 

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