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Hi, I am Amy Lee and I am new here.

Amy_Lee profile image
16 Replies

I am a RA patient since Jun 2014. I am now in remission and very much back to normal. However, I am still taking methotrexate until the doctor decided to reduce the amount.

Don't give up is the key to recovery. You must not cut the medication without the knowledge of your doctor. No supplement until you consult your doctor. Also, you must continue to exercise though painful at the beginning.

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16 Replies
Melody123 profile image
Melody123

I am throwing up with the methotrexate only at 4 tabs. I guess he will order it injectable. How do you start exercising? I think I am not ready yet. Maybe the throwing up set me back

Amy_Lee profile image
Amy_Lee in reply to Melody123

Hi Melody123,

Are you just being diagnosed of having RA? 4 tabs are only 10 mg, right? If you are just being diagnosed, I supposed you probably still at your peak of the pain. When you are at your peak, it will be very hard for you to start exercising.

I started the exercise using just a 2.5 feet long stick after 4.5 months of treatment. My muscles were wasted and I was like a very old woman then. The doctor sent me to the physiotherapy sessions and I was still in great pain to do the exercise. However, when the doctor sent me there, I believe it was time for me to start the exercise.

I started moving my hands up and down, front and back painfully. There was no result for about 6 months of non-stop exercising. I could not sit on the floor and could not squat down then. I was also doing the squatting exercise by holding on a chair or table top.

After about six month, I started to feel that my hands could move up higher with less pain. I think the methotrexate started working very well at a higher dose. I started with 4 pills and then 8 pills. Now I am in 6 pills and in my remission.

With the great improvement after many months, I continue to work on more exercises. I used thera band to increase my strength and I used soft ball to increase the mobility of my wrists. My wrists were very tender and painful hence I had to use a soft ball to start with. I was not able to straighten my figures, I sat my fingers under my butt as much as I could.

By doing the squatting down exercise, I finally could squat down lower. By sliding down from a sofa and found ways to bend my knees so that I could keep the mobility of my knees and I finally could sit on my calf now.

So, it was time I tried to use the lightest dumb bells. Then I finally move on to yoga, pilate and foam roller today. When I started the yoga again, I could not do it, so I stopped for a while waiting for me to get stronger and my joints to be more flexible again. I started with certain easier posts and I have no problem to follow the normal yoga exercise now.

As for the legs, I did a lot of walking. I had signed up a trip to Japan just before I felt sick, 10 months later I proceeded with the 8 days trip. Though I still could not sit on the floor and squat down yet, with the help of my friends, I completed the trip without much problem. After I came back from the trip and rested a few days, I felt a milestone improvement on my condition, I knew that it was due to a lot of walking during the trip hence I continue to walk around in the parks nearby when I could.

Today, I am back to my shape and I live a very much normal life though I still can feel some slight stiffness in the morning on my fingers and toes. During the day, I can also feel my shoulders are a bit stiff and I will continue to work on them.

Melody123 profile image
Melody123 in reply to Amy_Lee

Thank you. I have had it for fifteen years. I'm in remission now after the last three years on Orencia in which I had mouth sores and soreness under left arm I feel I came close to death. Now am just on methotrexate. I think I will start with sauna and jacuzzi thank you for your tips. I hope I can get back to normal

Amy_Lee profile image
Amy_Lee in reply to Melody123

You will if you follow the instruction of your doctor closely and work on any low impact exercise to ensure mobility of your joints. Let me know if you need any further information. We need support from one another with this horrible disease around.

pollewog profile image
pollewog

How did you get to be in remission?

Amy_Lee profile image
Amy_Lee

I surrendered myself to the professional who know best of how to handle my condition. I followed her instruction very closely and never failed to take my medication. When the time for me to start exercising, she sent me to the physiotherapy department and I went. Again I followed the instruction closely and never failed to exercise daily.

About 6 months after I started the exercise, then I saw the slight improvement on moving my hands slightly higher with lesser pain. I knew the methotrexate was working well and the non-stop exercising that I did is working too.

I am not on any kind of plant-based diet though. But I do believe that some plant out there will help to reduce inflammation, no harm trying that but not to stop your medication, that is the key.

Do more online research on what kind of plants will help you and try them out. No need to spend unnecessary money to get yourself into any program unless you are rich enough to have a lot of money to go round.

SherryKayB profile image
SherryKayB

Great advice. When in remission it is easy to think we are "cured"...ha! No cure for us, I am afraid...but those remissions are pure gold. By all means, follow your doctor's advice.

Amy_Lee profile image
Amy_Lee in reply to SherryKayB

SherryKayB,

Though in remission but I can still feel the difference. The joints around my body are still not as loose, therefore I still remember I am not totally out of RA but merely under control. I will have to always keep up with my exercise and medication to ensure I keep the sickness away from me forever. I hope and believe I can do it.

Cathy777 profile image
Cathy777

I love your exercise regime! You sound like a very positive lady! I sent you a private message accidentally sorry! Meant it to go here.

X

Amy_Lee profile image
Amy_Lee in reply to Cathy777

Cathy777,

Read the message, it is okay. I make mistake sometimes too. Well, since I am a single mother, I have to ensure that I am strong and positive enough to lead my kids along.

You are indeed right, I am a very positive lady. I do not like to go hide and seek too. I do not feel embarrass to let others know that I am a RA patient. I find being honest is ease to go round really.

I used to go to the play ground to make use of those equipment there to move my hands and legs. My daughter was always with me then because I could not walk properly and I could just fall over on uneven road. Now I am perfectly okay after about 2 years of medication. I am glad I achieve this and could like to help others to go the same way.

Recently I contacted our local arthritics foundation and I told them that I would like to join them as a volunteer. I like to share my experience of recovery and I prepare to guide those in need to do simple exercise during weekend. I feel great to be able to do my little part really.

Melody123 profile image
Melody123

I switched to Arava from methotrexate. Make sure you don't drink any alcohol Arava didn't bother my stomach. I was able to exercise when I started remicade as was feeling less pain then

Amy_Lee profile image
Amy_Lee in reply to Melody123

Hi Melody,

I live a very healthy lifestyle all my life, therefore I do not understand why I could have RA. I do not drink alcohol or I do not smoke. I do not eat very fatty meat, I eat very little red meat too. My diets are mainly fish, chicken, vegetables and fruits. I joined yoga classes 3 to 4 times a week and went hiking during most of the weekends. Therefore, I just could not believe that I collapsed.

I am taking mtx and arava right now. Apparently with a few combination of the DMARDs at the same time will put the RA patients back to their normal life faster and the damage will be minimum if treated at the very early stage. Therefore, I hope you are not only on Arava.

Melody123 profile image
Melody123

Hi. I am new here too. I also lead a healthy lifestyle. No alcohol no smoking and good diet. I am a nurse. My mother had RA so I can see it is genetic. My father's uncle also had it.

No I am not on just Arava. I went on remicade and Arava at a very early onset. In 2001. I tried just about every medicine and last three years was on Orencia and methotrexate. Now I am only on pills. Methotrexate and sulfasalizine

I too am a single mother. I was married but he left when I found out I had RA. I have raised my son by myself and he is 21 today and in college. Very hard though

Thank you

Melody

Amy_Lee profile image
Amy_Lee in reply to Melody123

Dear Melody,

I just send you a link on the exercise which I think you may be able to follow. Try that out.

Yes, it is very tough for us the single mother to raise our kid/s all alone. Anyhow, when the situation as such, then we just have to accept it and do our best with what we can. We will be able to make it somehow.

You should be very proud of yourself now, your son is already 21 and he is in the college now. Isn't a great achievement being a single mother and having RA too? I always feel very proud of myself too, I have 3 kids, they are all in college overseas and I too had been diagnosed with RA.

Leroa profile image
Leroa

I'm newly diagnosed. Only on Plaquenil for 7 weeks. I've read posts about remission, what is that with regards to RA exactly. I'm not sure what to expect in the near or distant future

Amy_Lee profile image
Amy_Lee in reply to Leroa

Dear Leroa,

It is indeed sad to have you to join us here really. RA is a very painful chronic disease that we have to bear for our whole life. We can only try to get to remission so that the disease is in control and we can live our normal life.

Remission is basically when the disease activity is low and you are in control of your life and you can live on with your normal life again. However, it takes time to get into that.

I believe you have gone through the posts above hence I am not going to repeat what I said before. You need to accept yourself and this disease needs to be treated at the very early stage aggressively to avoid any damage to your joints. Then you will have a good chance to go into remission within a short period. Read the videos below to have more information so that you have a good knowledge to fight the disease.

healthunlocked.com/ra-warri...

Do not give up and do continue your exercise. I started my exercise very slowly and painfully after 4 months of methotrexate and Prednisolone and I am therefore recovery very fast and very well. I am basically back to my very much normal life now. Read my link below, I hope it will inspire you to move on positively to fight the disease.

healthunlocked.com/ra-warri....

Also, very importantly, you cannot skip your medication until and unless your rheumatologist approves it. You should not take any health supplement unless your rheumatologist approves it too. Some health supplement may interact with each other that may cause very bad side effect to your body hence you must not just take any supplement without your rheumatologist approval.

You can always ask me if you need to, I will share what I have experienced with anyone of you to build your confident to fight the disease.

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