Hello All

Call me Hi-Def. My status: 49 years old, married with children. I came to the US when I was a teenager. I had surgery on my right shoulder in my senior year in high school.

I was diagnosed with RA in February 8, 2017. This is the most painful experience that I’ve ever been through. I cannot explain this painful feeling to anyone. It’s just like explaining color to a blind person. Beside I try my best not to complaint about this excruciating pain to anyone around me because I don’t want them to feel helpless and panic. Since I was out on short term disability, I’ve been searching about this crazy illness and I found this group. So far this is the most active group in regard of the RA. I learn a lot from all the experiences that you all been through. And I thank you all for sharing the experiences and advices.

Way back when I was 27 years old. My sister found several bald spots on the back of my head. I was scare at first. After visited the dermatologist, she told me that I had autoimmune disorder. She gave me some cortisone shots around the bald spots then said “Don’t worry about it, your hair will grow back”. So I took her advice not to worry and yes the hair grew back. As I get older, the bald spot resurfaced again but not as bad as before. I was not panic like the first time as bald head become a new style for men. Less that I know this autoimmune disorder can lead to the RA that I have now.

Fast forward a bit to 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 abnormal heavy lifting that triggered the old 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 of my body 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 her friend who happens to be a rheumatologist and set the appointment. I visited the Rheumy the same day. She prescribed 20 mg Prednisone per day and detail blood test. After 5 days of taking the Prednisone, I could move a little bit but nothing near comfortable. My Rheumy called to check on my condition and asked me to increase the dose to 30 mg.

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 mg 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. Even My Rheumy already gave me the information about MTX dose for RA during the visit. As we all know the word “cancer” is a nightmare for all human being. I left the MTX pills on the table for 3 days but finally I took them because the pain was not going away. I could not sit on the floor to play with my son. If I sat down then I could not get up without hang on the any furniture around me. My whole body was pain to the touch. Every time my son gave me a big hug, it sent shockwave throughout my body.

On the second week of taking Methotrexate, the pain on the shoulders and hips gradually go away. But it started on my hands and my ankles. Especially in the morning, I could not hold anything properly. Things easily felt out of my hands so I decided not to do any cooking because I don’t want to handle knife or any hot object due to safety.

I also notices that acnes started to show up on my face and on my back. This upset me a bit because I always have smooth skin but what choice do I have? Side effects are known facts while taking any kind of medicine. Then 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. This reminds me about my childhood. When I was a young boy, I was crazily active which brought a lot of headache to my parents and a lot of scratches and bloody wounds to my body. Whenever I had a deep and bloody cut, my older sister was always there to tend my wound. She smashed the turmeric root and placed it on top of the wound. This helps the wound heal faster and minimize the appearance of the scar. Turmeric is very popular in Asia and known for healing and anti-inflammation.

On my third week of MTX (beginning of 20mg dose), Rheumy told me to reduce prednisone down to 20mg (2 pills) with a caution that I have to listen to my body if the flare comes back I have to increase the dose back to 30mg If my condition getting better after 10 days then I can reduce to 10mg.

After 10 days of Prednisone reduction, I feel 80% better. I still feel some numbness on my hands but the stiffness starts to fade away. I can put my running shoes back on. Yesterday I reduced prednisone down to 10mg (1 pill) and pray to God to help me through this journey.

Since I was diagnosed with RA, I asked my Rheumy about restricted food and drink in regard of my RA condition. She said there is no restriction except beer or hard liquor due to the medicine that i'm taking. Per Doctor’s order, I stopped drinking beer altogether and continue with my normal food. Then I found out a hard way. One morning my wife made me a bowl of Beef Noodle soup, 20 minutes after a yummy breakfast, my left hand swollen up like a banana. That was the end of red meat for me. In my opinion, each RA patient reacts differently to certain kind of food. So I will do trial and error for food and drink.  There is no clear cut on this dietary thing. Right now I only eat chicken or pork but in a very small portion and a lot on vegetables and sea food. Normally I don’t eat that much meat anyway.

Engineer is my day job, so I have the habit of recording data.  I keep track all the detail in regard of my RA. Such as the time I take any kind of medicine, food and drink that I consume daily, even the time the flare starts up and ends. These data help me to adjust the time I take medicine and eliminate any food or drink that triggers the flare. For example; I found out that if I took Prednisone at noon, I would have a very difficult time to sleep at night. So I continued adjusting the time until I found that 9AM is best time for me to take this medicine.

In regard of natural alternative medicine; my family has a long history and back ground in eastern 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 eastern medicine. In some near death cases, western medicine gave up but the eastern medicine worked wonder. 

Since I was on short term disability, I had a lot of free time. Beside daily 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 there is a formula for this illness in eastern medicine but he does not remember the exact ingredients. So he advised me to call my cousin for more details. After one long waiting week, my cousin emailed me copy of the formula with good details for each ingredient and a lot of advices from the doctor in Vietnam. But after I scanned through it, my mind went blank because I didn’t understand 90% of all the medical terms in there. Even if I understood, I just don’t know where to buy those ingredients. So I asked my cousin to purchase those ingredients and send them to me.

Finally one month supply of those ingredients arrived. I took my first bowl of the eastern medicine today. It was so difficult to swallow the first sip. It was as bitter along with woody aroma as eastern 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 eastern 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 RA Medicine. He said that it is ok to take this eastern medicine along with all the pills that I’m taking right now.  He also reminded me that I have to be patience because eastern medicine takes a while to show the result. So I’m in it for the next 4 months.

I’m still taking MXT, Prednisone, vitamin D while taking this Eastern medicine because I cannot stop MXT or Prednisone right away. Depend on the improvement of my condition; I will gradually reduce the MXT, Prednisone intake and let this eastern medicine taken over.

This must be the first and longest post I ever write online. I hope we all get through this journey with the love of God. I know God is always there for us.