Methotrexate – My recovery journey

[Amy_Lee]

After the posts last 2 days, from the responses of some, I know that some RA patients have yet to understand the recovery process. Therefore, I feel that it is very important that I share my experience here hoping to create more awareness of the recovery process.

I started my DMARDs in Jul 2014. I was lucky to be treated very early. My attack was quick and I was collapsed. I had been a very healthy person and I hardly took a few days medical leaves throughout my career life.

I developed a lot of side effects from MTX. My whole body swelled up like a balloon which I felt I could burse anytime. I changed a larger size of my shoes and clothes to accommodate that.

My rheumy put me to the occupational therapy at the start and I was treated with hot and ice packs on different part of my body. They used hot sand to sand my hands. They also used a kind of electrical acupuncture equipment to plug on my hands, legs and shoulders.

I did a lot of research after I was diagnosed of RA. My rheumy told me that MTX took 4 to 6 months to kick in. When I went back for my second appointment in Sept 2014, after 2 months of treatment, the pain was still unbearable. Came Nov 2014, I questioned my rheumy why I was still in extreme pain after 4 months of treatment? My rheumy told me to be patient, the pain would go off very slowly.

My rheumy increased my MTX dosage, immediately I felt a little relief. When I went back to see her in Jan 2015, that was the 4th appointment after 6 months of treatment, my pain indicator was still 8 but I could feel that it reduced. I told my rheumy of my feeling happily. She said it was because my body started to get use to MTX and she did increase the dosage for me.

She said that since MTX was working, I could slowly stop prednisolone. My body weight dropped tremendously. I left with 38 kg and I had only skin on bone with me. I looked very old and horrible. Looking at the problem of muscle wastage on me, my rheumy immediately sent me to the physiotherapy center to get started. He said my pain started to reduce so I should start the physio immediately.

It was a very painful process in the physiotherapy center. My neck and back were also in great pain, I walked like a machine. My physiotherapists told me to force my neck and waist to turn, I could hardly do it but I tried to follow. I did my exercises every morning and evening painfully for about 1 to 2 hours each session.

My rheumy increased the MTX dosage again on my 5th visit. I felt the pain relief tremendously again. I was so happy and I knew I was being treated correctly. What I did was continue to trust my rheumy and continue to work on my limbs and body.

Every visit that I had, I demanded to increase MTX so that the pain could reduce faster. I was always looking forward to that. After a year and a half of treatment, the pain level already reduced to a very much tolerable level but unfortunately my liver markers were bad hence my rheumy stopped to increase MTX but to put me under observation. In May 2016, when the liver markers went up to 3 times higher, she decided to reduce MTX instead. At that time, my pain level was already so much better and I was almost back to normal.

In Sept 2016, I decided to go back to the badminton court to see if I could handle the game. I was glad that I could though I did not finish the game to avoid overworked on my hands and legs.

Last week I went for my first bowling game which I was also worried about the weight of the ball and the momentum of the swing? Glad to say that I did it quite okay too.

What I want to say here is MTX needs a long time to work on us. We must be patient and must not expect immediate painless result after the 4 months. I hope my experience of the recovery process does give you a good indicator of what to expect.

[Hidden]

Hello, your experience of your RA is interesting and it's nice of you to share it on the forum. It is your experience and your RA though, my disease progression is rather different in many, many ways and my experience of the drugs and exercise regimes are too. I think I would bet on there being as many different RA experiences on the forum as there are members!

I'm happy for you being able to get back to the sports etc.

[Amy_Lee in reply to Hidden]

Dear Hidden ,

You are very right on that. All of us have our own experience. As I said, I just put that down as a reference especially for new RA patients. They may have their own experience too.

[Patsy70]

Yes it's taken me 15 months before it started working properly. Just slight pain in my ankle which doesn't bother me to much. It's the tiredness that gets me more than anything but try to pace myself

[Amy_Lee in reply to Patsy70]

You are right. I too get tired more easily than before. I try to sleep early every night but I can't sleep as soundly before.

I am glad you are in good condition too. The painful experience really killing me.

[pino99]

Thanks for sharing that, it is always encouraging to hear of imrpovement and people going back to some of their hobbies. I am due my first retuximab infusion this Wednesday (I cannot have mxt due to lung involvement) and I am very much hoping for a similar outcome to yours. Love the spreadsheet! Off to start one of my own 😃

[Amy_Lee in reply to pino99]

Each and individual one of us will have our own recovery journey. The important thing is to trust your rheumy and work closely with him or her.

I purposely extracted the summary for easy uploading this morning. I have a details spreadsheet to support it. It really comes very handy to track my own health performance.

[Simba1992]

Hello Amy_Lee,

What I found interesting in you story was that it seemed that your healing process started when you started your excersize inspite of all the pain and with determanation. I have heard of others that have been on mtx and when starting excersize there has beena turn to the better. Combining this with dietary modifications has been even more effective. xx Simba

[Amy_Lee in reply to Simba1992]

Agree with you, exercise was one of the most important part of my recovery. If I did not sit on my fingers, I believe my fingers would not be flexible again. If I did not use the pulley and monkey bar methods, my hands would not be able to lift up straight again. If I did not try to sit on my calfs, I would not be able to squat and sit on the floor again.

I did use the elimination of food method and I put them all back and I am actually okay with all of them so far. Anyhow, I believe because I have been eating very simple and health food, hence I am okay with my normal diets. I will try to read up more about diets as I deem no harm to learn more.

Amy

[Hidden]

Very nice tracking and story. I do the exact same thing with my entire medical (tracking) and it is so wonderful to see it working, whichever choice you and your doc make for your care. Congratulations!

[Amy_Lee in reply to Hidden]

Dear Caeryl,

I have a very details tracking records on my blood works and medicines record, also how I feel record, when I go for my appointment, I will bring along many questions to ask. I will bring along my blood works record and to ask my rheumy if there is any doubt. All these records are very helpful indeed.

Amy

[Hidden in reply to Amy_Lee]

That my dear friend, is what responsible people do I think. It is really one of the only ways to take control of your own health. Very Nice... I do the same thing with my doc. Have a wonderful week!

[Amy_Lee in reply to Hidden]

You are right, if we want to get better, we should put in some effort to take control of our own health instead of leaving that to the doctor. I am glad that you have similar ways.