I was diagnosed with RA in February 8, 2017. This is the most painful experience that I’ve ever been through.
October 2016; after two weeks of training for employees to run new machine, I did a lot of heavy lifting at work which I normally don’t do at work. I felt pain on my right shoulder but I told myself that it must be the cold weather and the heavy lifting that triggered the old surgery wound. I didn’t take any medicine and waited for the pain to disappear as it did in the past. As time passed, I started to feel the mild pain and stiffness on my left hip in the morning and the pain went away as I moved around. If I sat down and relax, the stiffness would come back so I kept myself moving all day until I went to bed.
During Christmas break, the pain is more severe and new pain appeared on my left shoulder and right hip. At this time my wife took me to the see MD. He gave me pain killer and instructed me to have blood test and “Chest X-ray”. I asked him “why do I need chest x-ray while I had a severe pain in all the joins and muscle?”, but he insisted that sometimes something wrong in the lungs can cause the pain elsewhere too. I took his words as he is a DOCTOR
January 13, 2017, my condition got a lot worse (3 weeks after first Doctor Visit). It was extremely difficult to get out of bed in the morning. I was paralyzed 85% of my body. My arms and legs were locked up as being wrapped around by thousand rounds of rope. At this point, the only parts that pain free were my hands and feet. I also had mild fever in the afternoon and difficult to fall into sleep at night. I woke up every 30 minutes due to the pain and cold. I could not position my blanket to cover myself as I used to. So I decided to sleep on the couch. This helped me to rise up out of the couch whenever I want to. I used heavy coffee table as an anchor. I put my foot under the table and used the muscle of my back to lift myself up.
Then the initial blood test came back. There was no indication of anything besides little inflammation in the blood test and my lungs are OK, so the doctor gave me more pain killer with stronger dose. At this time I got so angry (let me skip the conversation with this Doctor because there was a lot of bad language in that conversation)
On the way home, I called my sister; she is a Register Nurse. I told her about my symptoms. She said I might have Rheumatoid Arthritis. She called and set the appointment with Rheumy for me. I visited the Rheumy the same day. She prescribed 20 mg Prednisone per day and ordered detail blood test
On my second visit with Rheumy, the second blood test result showed that I indeed have RA and extremely low in vitamin D. So She prescribes Methotrexate (gradually increase weekly from 10 mg to 15 mg then 20 mg) along with 50K IU Vitamin D, 30 mg of Prednisone and Folic acid.
I was reluctant to take the MTX because the term “MTX is for Cancer treatment” kept pounding on my nerve. I left the pills on the table for 3 days but finally I took them because the pain was so bad and not going away.
On the second week of taking Methotrexate, I noticed that acnes started to show up on my face and on my back. These were the symptoms of weak liver and MTX is the culprit. My wife told me to take Turmeric pill (500 mg daily) which may help the liver. After a week of taking Turmeric pill along with other pills, I did not see any new acne and the old one started to heal pretty quickly. Two weeks into MTX and these side effects sent me into high gear of searching for natural alternative treatment.
In regard of natural alternative medicine; my family has a long history and back ground in Vietnamese medicine which dated back 5 generations to my grandfather. My father could not continue this profession due to the Vietnam War. But I had seen a lot of successful results of Vietnamese medicine. In some near death cases, western medicine gave up but the Vietnamese medicine worked wonder.
Since I was on short term disability, I had a lot of free time. Beside daily light exercise, I spend a lot of time online in search for alternative medicine. The gloomy vision of taking bunch of pills daily for the rest of my life and waiting for the side effects is horrible. My youngest boy is only 4 years old. I want to be healthy to spend quality time with him. This thought alone gave me the energy to dig for more information but there is not much information online about alternative medicine for RA. Majority of the posts are not trustworthy or they try to sell you some powerful pills that can cure all sicknesses.
On a phone call with my father, He said that Vietnamese naturopathy has a formula for this but he does not remember the exact ingredients. It is kind of tough for 91 years old memory. So he advised me to call my cousin for more details. After one long waiting week, my cousin emailed me the name of formula which is “Hoạt Huyết Phục Cốt Hoàn” (Translate: improve blood flow and rejuvenises bone structure) and also a lot of advices from the doctor in Vietnam. I asked my cousin to purchase and send them to me.
Finally one month supply of those ingredients arrived. After 6 hours of cooking the medicine, I took my first bowl of the Vietnamese medicine. It was so difficult to swallow the first sip. It was as bitter along with woody aroma as Vietnamese medicine smell and taste like. After 15 minutes I finished my first bowl. I realized that it was not as bad as the first sip, just like drinking strong cup of coffee without sugar.
Note that while waited for this Vietnamese medicine come to my door, I had many long conversations with the doctor in Vietnam about my current condition and all of the medicines that I’m taking right now. He is very familiar with MTX, Prednisone and other popular main stream RA Medicine. He said that it is ok to take this Vietnamese medicine along with all the pills for now but prepare to taper them down as soon as I can. The Vietnamese medicine does not have any side effect at all so it is safe even for 3 months pregnant ladies and children of 2 years of age. He also reminded me that I have to be patience because Vietnamese medicine takes a while to show the result.
2 weeks into the Vietnamese medicine, I decided to stop taking MTX and began to taper the Prednisone. The first 20 mg Prednisone was easy to come off but the last 10 mg was a battle. I had to ask Rheumy to prescribed 1mg pill so I could manage the dose correctly. After 4 weeks I was strategically off prednisone completely. I also I drastically changed my diet and quit smoking and alcohol completely overnight.
During my research I found another alternative way to fight this RA which is the Anti-biotic Protocol (AP) of Dr. Brown. If Vietnamese Med does not work out then AP will be my “Plan B” because it is cheaper and less invasive so I asked my Rheumy about the AP, she said never heard of it and assumed it was another scheme of money making. Less that she knows, AP is approved by RA Board or she was just plainly playing dump. But instead she advised me to take biologic and ordered me to take a test for TB, I walked out of her office and not came back since.
At this point; beside Vietnamese medicine; I only took Vitamin D, C, and Turmeric, not any kind of other forms of pain killer or Big Pharma drugs.
The first 2 months of taking Vietnamese Medicine, I did not see any change except sleeping and eating a lot. The excruciating pain was still there I was frustrated and wanted to give up but the doctor in Vietnam advised me to be patience. At this time, I was still on sick leave so when the worst pain attacked I just bit my tongue or took hot Epsom salt bath.
At the beginning of the third month, I started to see the result of the Vietnamese Med. Every morning I woke up with a new surprise like miracle. The pain, swelling, bruise and stiffness started to fade away little by little from different location of my body. I could feel the improvement through all the volunteer and non-volunteer movements of my body. My family and friends also observed and surprised at this improvement too. 1 month before they saw me had an extremely hard time to get in and out of the car. 1 month later they saw me ran through the parking lot to get to my car under the rain.
After little over six months of fighting this disease, I feel so good; I don’t feel pain anywhere on my body. Matter of fact, one week ago I ate some left over French fried from my boy and yesterday I ate 1 slide of Pizza but no flare showed up. Oh boy, it tasted so good. But I did not want to push too far because technically my body still weak.
Hopefully this will be the end of my RA journey. I will begin my cleansing plan to push my health up to its optimal.
Now I understand why the Vietnamese Doctor mentioned that suppressing the immune system is not the right approach because it’s just like sending the troops to battle without gun and ammunition while politicians sit in air conditioning room and keeps saying “we win the battle” AKA “Masking the symptom. No more pain”. But the true is the war is silently expanding to other region. As soon as you remove those immune suppression drugs, the pain will come back in revenge.
I just want all the RA fellows to know that there is alternative treatment for this RA.
Update: 10/10/2017 – I’m in complete remission. I don’t take any medicine for RA anymore. I regained all the weight that I lost. Bad weather does not bother me anymore. I can consume all the restricted food such as beef, egg, shrimp which triggered the flares during the battle with RA.
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HDo2010
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Yes, in 2000 they did a clinical trial with 200 RA patients.
-157 patients were in complete remission after 90 days treatment
-28 patients were 70% - 80% improved after 120 days treatment. All of these patients were in severe cases with joints deformed prior to this clinical trial.
-15 patients were 40% improved after 120 days treatment. All of these patients does not follow diet, exercise plan
I got English translation but it's rubbish/Google translate. Can't see any study mentioned though, just the one page too, Blood centre to the core? Does that make any sense? The link doesn't retain translation to English.
Keep in mind that, i was a RA patient just like other RA fellows. those are the only 2 links that the clinic has. I cannot control their website, but myself I don't sell anything
There is a similar disease called reactive arthritis that is more common I understand in younger men - whereas rheumatoid arthritis is more common in older women. Reactive arthritis can go into spontaneous remission. Of course there are always exceptions!
However it strikes me that the majority of people who pop up here with positive experiences of achieving disease remission through diet or other alternatives are men in their 30's and 40's. Not a scientific study, just my informal observations over 7 years - but is this just a coincidence?
I meant to say that I'm pleased it's worked for you, and I hope you stay in remission with no further problems.
It is just hard for those of us who have tried many different approaches with no success to read that someone can get over this disease so lightly. We know that this disease is very variable, and that for the majority of people the only success they have is with the conventional approaches.
Thanks, there are many doctors who are wrongly labelled quacks.
There is a difference between alternative practitioners and those who only use herbs etc.
In the USA, Dr Mercola is a fully qualified and long practising MD who happens to also embrace methods that are ancient and which cut out the pharmaceutical companies.
A large number of such doctors have mysteriously and suddenly died over the last 15 months or so, particularly in Florida.
So we have to watch out also for the motives behind labelling, especially in the USA.
Some of what this Doctor says has been most helpful to me.
We all have to judge for ourselves, weighing up real facts as far as we can verify them.
I am supportive of several alternative practioners, as well as new approaches. I don't believe all conventional doctors are right, and I certainly think there is sense in looking at the whole person and their lifestyle. However I remain suspicious of some practioners who seem to have the desire for wealth and reputation as their motive, and charge rather a lot for very little, and refuse to open their data for indépendant study.
There is much truth in the theory of good gut health and links to cancer and all kinds of immune system diseases if gut health is neglected.
In the USA, where you appear to have been diagnosed, LDN is apparently FDA approved but I never heard of it being prescribed for RA.
If low dose MTX works, why not low dose naltrexone?
And adopting healthier lifestyle choices, as you appear to have done, is good.
Why be more vulnerable than we have to be, to getting cancer etc, which is more likely in RA people, when we can maximise our chances by eating non inflammatory foods, taking turmeric curcumin/boswellia/boron/astaxanthin, and generally looking after the amazing machine (the body) in which we have to live?
But we need to have citations to proper studies and approved methods.
I had 3 prongs attack plan; Food, Medicine/Detox/Pain Management, and Meditation.
- Food/drink: Besides eliminating all flare trigger and/or unhealthy food, I increase vegetable and fruit, especially anti-inflammation fruit to 70%, reduce meat to 10%, remain 20% rice or rice noodle. Drink only water, apple cider, and pickle lime juice to neutralize the pH in my gut.
- Medication/Detox: Changed to Eastern Medicine, stopped taking Methotrexate or any kind of pain killer pill and taper Prednisone to 0 mg. Add more supplement such as MSM (2 tea spoons/day), Turmeric (2 times/day. 3 pills each time). For Detox, I drink a lot of water; take long hot shower in the morning (too much bathroom traffic in the morning for a bath) and Epsom salt bath before bed. I also used hot water pouch to apply on my hand. If the water pouch was too hot, I covered it with a t-shirt then apply to my hand. I know this does not take away the pain for a long run but at least it at that moment it made me feel less pain and relax.
- Meditation/Praise/Reading: I was on disability leave for 2 months. I was frustrated, angry and hate myself for getting this disease. But I thought “being negative about this disease only made the matter worse, I should look at it as a glass half full” then I praised and meditated. I still do now. This helps me to take my mind off the pain and give me hope for recovery. Then I researched and read a lot about this disease in all RA websites. I found that all of the successful remissions stories from RA patient bring me hope. The roadback.org has a lot of successful story. Even though I do not follow Anti-biotic Protocol but at least I know this disease can be defeated.
That is good. It is very difficult in some countries to get a balance of treatments ie modern medicine and the ancient knowledge that was discarded with the advent of pharmaceuticals.
As I mentioned in my story, my family has experience with eastern medicine for 5 generations. Unfortunately since my father's generation, none of us continue in this profession due to Vietnam war. As my father looked at the ingredients, he said this formula for RA has been used for hundred years. Now they improve the formula and combine with modern lab to diagnose and monitor the disease more effectively.
The fund for RA research is next to none. I read some where; it costs millions of dollars to do this research. Who will fund this research? Government? or Big Pharma? I don't think so. Government is already in bed with big pharma to earn billions of dollars from selling immune suppression drugs. Why rock the boat. I can not wait for any study or research. I was in pain and I had to find my way out of this mess and help others along the way too.
Arthritis Research UK lists all current studies they are funding, if you'd like to see the link takes you to 32 pages of them, 331 in total, they're the current ones arthritisresearchuk.org/res...
I'm pleased you've found something that works for your form of arthritis, I really hope that you retain remission. I do wonder though how much stopping both alcohol & smoking added. Also if you were advised when your liver values rose that alcohol should be limited, even stopped, or MTX was halted to allow your liver to recover. With respect many of us take MTX with success, it's a commonly used med, first line treatment & for many newly diagnosed members it's their first specialist med & so can be a concerning time, we understand that. Hopefully this link will help dispel their concerns that when used in much lower doses & far less frequently it changed from being the chemotherapy med it was developed as & became a DMARD bjchealth.com.au/connected-...
The link you provided unfortunately doesn't lead to any research study. Unfortunately we would need more than the information you provided Allanah, if you could find the names of the authors, title & date that might prove helpful. Thank you.
In regard of smoking, one morning of the first month of this disease, I limped outside of my house for a cigarette. As soon as I inhaled, instantly I got excruciating pain throughout my whole body. I collapsed right there on the footstep of the door. This experience is enough for me to quit cigarette.
When the Rhuemy just prescribed Methotrexate, she mentioned that my liver had to be monitored because of this drug. It's logical to quit alcohol too. If the drug already bad for your liver why add more toxin to it.
I don't need any link that help to dispel my concern about Methotrexate or Prednisone because I'd already been through the horrible side effects of those so called "miracle pills". Is it safe? if my hair fall out, Acne all over my face and back, my liver enzyme was through the roof, just to name a few. Also it took me a whole month to ween off Prednisone.
AS I mentioned early, I am just an RA patient. I don't have the access to the library of that clinic so I can not provide any detail study beside what I saw (and translated) on their website. If it not satisfy you then so be it because I'm not trying to gain any PhD out of all this.
Again, with respect, the link wasn't intended solely for your information, rather those who may have been concerned about the term you used to describe MTX. We are all patients here but we can't just take one person's word for a type of treatment without clinical evidence of safety & efficacy even though it appears to work for them. This is the reason we asked, no underhand reason, it's common practice to provide them if at all possible.
As far as I can tell, those patient numbers match up with a market survey 'trial' of a vietnamese formulation in 2008 of people with osteoarthritis, not RA, and there isn't a published paper nor even a conference abstract to outline it more fully nor describe how improvements in pain levels, mobility, or other symptoms were assessed.
It's a little difficult to track but that is the closest match in reported numbers and impact - just a different disease - to the summary given by HDo2010 .
My deleted reply was long so I'll just state the "Gist" of it.
Some people may actually seem cured of their RA and believe that they were able to put it in remission. They honestly believe this and they want to share it with the people who still suffer. How do I know this? Well my hubby's RA+ diagnosis went away once he change his diet. His rheumy was confused.
My hubby, James, spent the last 40+ years binge eating on smoked meats, sausages & cheese. He would peel a block of cheese like I would peel a banana.
He wasn't overwieght, so no one but me knew of his obsession with cheese & smoked meats. One morning he couldn't get out of bed and he was in exteme pain with all his joints swollen. Saw GP and blood work came back positive RF. He saw a rheumatologist and was put on meds.
He was still in extreme pain & he was house bound. He couldn't get out to the store to buy his favorite foods so he was left to eat what was in our house. Slowly his swellings went down and he was able to go back to work. As his swellings went down, his rheumy was able to do more tests on him. It turned out that James has & still has pseudogoat and he is able to control it by his diet for now.
Pseudogoat can mimick RA. The Calcium pyrophosphate crystals accumulate in a joint and trigger an immune system response. These Calcium pyrophospate crystals attacked all of James' joints because of his obsession with cheeses & sausages. If your diet can help lower the calcuim pyrophoshate, then why wouldn't you change your diet?
Anyways it is dangerous to stop dmards in the hopes that someone can offer you an alternative treatment. And it is dangerous to believe that many people have been misdiagnosed with RA.
As of today, there is no 1st world Country's Medical Authority that states alternate treatments for RA. Why risk your life? Why cause irreversable damage to your joints in the hopes that such & such will cure you?
I think people resort to alternative medicine when conventional medicine has failed. Electro acupuncture and Chinese herbal medicine worked wonders for me, whereas Western medicine had failed. I don't think it is dangerous to stop Dmards for a while; in fact, it will give your liver a rest. I also find that any medicine works better after a break as the body just gets used to it.
By the way, I was diagnosed with gout on the basis of a very high uric acid blood test result and I was told that the nodules on my fingers were typical gout topi. That is UK conventional medicine at its best - Harley Street. An ultrasound identified the nodules as variously a piece of tendon that had popped its sheath, a bony lump and a soft tissue swelling. Ultrasound and MRI also revealed synovial thickening with increased vascularity, effusions, fluid on the wrists and inflammation. Blood tests done at the same time showed no inflammation yet it was clearly visible on MRI and ultrasound.
I am really not convinced by Western medicine.
Also, I have joint damage in my fingers on account of the delay and denial in Western medicine - all based on blood tests.
Thanks for sharing your story. I found it fascinating. I’ve recently had to increase my meds which I hate and I’m still no better. Anything that helps I’m all for it
Thanks for the info and I have made a note of the medicine.
I feel a lot of our problems in the West, certainly in the UK, is the over-reliance on blood test results. RA does not show abnormal blood tests for a long time and the doctors here know that but they fob us off until we are in a severe state. They seem to be afraid to make a diagnosis of RA - is it because treatment costs money, I wonder. My blood tests were normal at first but six months later they were abnormal. Also, they relied on a high uric acid blood test to diagnose gout - yet there are specific tests for gout which were not carried out, and high uric acid does not always cause gout. I had RA, not gout.
After nine months, with no relief from Western medicine, I tried electro acupuncture followed by Chinese herbal medicine and it worked very well. I tried the electro acupuncture on its own at first to see if it would work alone. My fingers were jammed and swollen and after about 35 minutes, my fingers started moving and it relieved the pain for 3/4 days. I tried it again and the same thing happened. I then had a course of it. Along with the course, I tried Chinese herbal medicine in the form of tablets. They comprise Danshen, Dong Quai, Myrrh, Frankincense and Liquorice. I cannot get them in the UK any more because of EU regulations but they are available in Australia and Hong Kong.
I was taking Hydroxychloroquine along with the Chinese tablets and noticed improvements in my shoulder and my hands last year. After two months, I ran out of the Chinese tablets and my hands immediately flared up and were stiff and painful. The shoulder stopped improving but it did not get worse. I then found a bottle of the Chinese tablets and started again - within one/two days the pain and swelling in my fingers had gone down.
My shoulder resolved completely and has been normal and fantastically flexible for a year now. I still had little flare ups in my hands from time to time, but not bad. Last June, for the first time in three years, I could actually write. I was discharged from the hospital in August with the proviso that I could get the GP to re-refer me at any time if I wished.
However, for the last fortnight, my hands have again flared up along with my forearms and elbows and even both hips have now started. I really don't feel like going to the hospital again. Even if their medicine was any use, they are so inordinately slow I feel they defeat the object of treating the condition. I only found them any use in providing ultrasound and MRI scans to diagnose the condition - which showed synovial thickening and increased vascularity, along with excess fluid and inflammation. I have very little confidence in Western medicine and doctors. I suffered from endometriosis for many years and just wished I had given Chinese medicine a try then - it works by balancing the hormones which is crucial in relieving endometriosis.
It is a valid question. There is nothing rude about it so I will continue to state what I think.
My mother had severe RA at 31 and she was treated for it and it cleared up. She died at 80 without it ever recurring. It runs in my family and it does clear up for years and decades, so it is curable. The yardstick of cure in any illness, including cancer, is when it does not recur within five years and that is accepted by all insurance companies. I've also had friends with cancer and after five years they are discharged as cured and I really don't think anything can be more life-threatening than that.
I don't believe I am a first - I have been diagnosed with it and I have been discharged as "cured". In fact, I know I am not a first - because I know a number of people who have had it in the past and it has simply not recurred.
Lifestyle plays a large part in keeping it at bay, as in fact with most conditions. It is not serious in most cases - otherwise I would not have been discharged. Maybe it is just a feature of this site that those who get on with their lives do not post on here when they are cured.
There is a difference between different types of arthritis. RA is not curable. I'm glad yours is not reoccurring but i can assure you that many of us, yes the ones posting on here , need support and encouragement with our treatments which DO flare and reoccur.
I would never suggest that anyone comes off traditional medications without a long discussion with their Rheumatologist.
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