21/10/2018 Life as normal as it was before RA - NRAS

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21/10/2018 Life as normal as it was before RA

Amy_Lee profile image
24 Replies

Just a little update after many months away. I have been travelling these few months. Since my remission from Aug 2016, my life has been the same before I was diagnosed of RA in Jun 2014.

Going up the slippery limestone cave to take the beautiful photo was not easy and I was the first to go up instead of my healthy friend. She rather stayed low as she did not want to take any risk. RA patient like me can be as strong and health, if not stronger and healthier, as the normal people.

My experience proved that RA can be under control and we can live a very good life again.

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Amy_Lee profile image
Amy_Lee
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24 Replies
Les3867 profile image
Les3867

Brilliant, looks amazing. Well done Amy x

Amy_Lee profile image
Amy_Lee in reply to Les3867

I hope all of us can work toward it too. However, just be prepared the journey of recovery is painful still.

DRunnerchick profile image
DRunnerchick

Good to see you are still doing so well and not letting RA get the best of you! The cave looks fantastic and you look happy to be there. Wishing you all the best!

D🏃🏽‍♀️

Amy_Lee profile image
Amy_Lee in reply to DRunnerchick

Not easy to come to this stage when I looked back those painful days few years ago. Just hope that my experience can give some hope to the patients around.

helixhelix profile image
helixhelix

Thank you for posting. It's good to hear the success stories. I hope life continues to go well for you.

Amy_Lee profile image
Amy_Lee in reply to helixhelix

Helix, I reason of posting sharing my experience is to let other RA patients see that there is indeed chance of going back to our normal life, just do not give up and be strong.

stbernhard profile image
stbernhard

Good to get some great news. I am very happy for you. Keep going.

Amy_Lee profile image
Amy_Lee in reply to stbernhard

Stbernhard, thank you. I hope you will also getting better each day.

Simba1992 profile image
Simba1992

Happy fo you Amy_Lee😊 Are you still on meds or have you been able to cut down on them? x Simba

Amy_Lee profile image
Amy_Lee in reply to Simba1992

Simba, I am still on mtx and Arava. My rheumy told me that 7.5 mg of mtx a week is already the minimum, she said she may remove either one in future for me. She told me that if she removes these medicines all together, I might be at risk of flare-up.

I used to feel vomiting when I saw the box of mtx. Now that I only take 3 tablets a week, I am okay already with it. No more vomiting and so on. I will update again if there is any good progress in future.

One thing, my rheumy had organised the World Arthritis Day event 2 weeks ago and invited me to share my experience. I was so happy to do so and after my sharing, some of the patients walked up to me to thank me that they saw hope again in life. I felt so good to be able to give them hope. I will share when I am free.

Simba1992 profile image
Simba1992 in reply to Amy_Lee

Thank you for your update. I am so very glad you feel so good.Hope decreasing meds will also be possible in the future.All the best. xxSimba

Amy_Lee profile image
Amy_Lee in reply to Simba1992

Simba,

I remember you did try something else instead of taking DMARDs. Any improvement you find? It will be good to share your experience too if you do not mind.

Simba1992 profile image
Simba1992 in reply to Amy_Lee

Hello again Amy_Lee, Thank you for asking🙏🏻I am still not on RA meds. My ongoing research has yet to convince me that this is the best way for me to go. I am still on LDN and aspirin and certain supplements and vitamins as well as weekly planned excersize. I had a bad spell after a taxing stomach flu which caused my first flare and I needed to take pred to calm the situation. Now weaning off with the help of progesterone and pregnelone. Still hoping that possible to keep away from immunosuppressants.

Amy_Lee profile image
Amy_Lee in reply to Simba1992

Simba, you are such a brave and determined woman to me. It is such a great risk that you are taking. I will pray for you and hope that you will find something that work for your naturally. Do update of your progress, that I believe will help some of us who intend to know more. Especially I want to know what next after remission? Can I get away from DMARDs eventually and so on? My rheumy told me that it will be a big risk to take and she does not want to take me off all these at this very moment first until later to decide.

Simba1992 profile image
Simba1992 in reply to Amy_Lee

Thank you Amy_Lee, Yes I am very determined and still find that I personally would take a bigger risk starting with DMARDs and eventually to biologics and then.....yes not really knowing what. Having read about the underlying metabolic problems and dysfunctions that push the illness forward I can only see that meds in fact do not alter these processes only calm the situation for a period of time and I fear in fact gives the illness a firmer hold on us.

But this is me and my choice. I hear of so many that are having a full life and find big help in meds and I am sure this is worth taking the risk. Our bodies are quite amazing in handeling hard situations and stresses of meds but we are all different. When you are young when diagnosed I believe the situation is different in very many ways. I was no longer young when diagnosed.

The best of luck to you and hope you will keep on feeling good and enjoying life.xxSimba

Amy_Lee profile image
Amy_Lee in reply to Simba1992

You are right to say that we are all different. Also, I am not ready to take any risk without DMARDs to control my sickness. What I can do is to listen to my rheumy, if she thinks I should stop, then I will stop else I will continue. However, I will continue to see what next after remission.

Shalf profile image
Shalf

Fantastic! Lovely photo. Keep travelling, keep smiling and keep well. Loved your words re being stronger and leading the way! :) xx

Amy_Lee profile image
Amy_Lee in reply to Shalf

Dear Shalf,

Thank you. Yes, we need to be stronger and fighting along positively to be back to normal again. It is not easy though.

Nyreedw profile image
Nyreedw

I'm same. My life is pretty normal too. I've had RA 20 years and I'm doing brilliantly. I'm working and fully active. I travel as much as I can too. Even climbed to the top of the Vatican dome, 2 years ago. Took me a bit longer than others but I did it. I refuse to let it take over my life. X

Amy_Lee profile image
Amy_Lee in reply to Nyreedw

Dear Nyreedw,

So great to know you are doing so well too. Since I was diagnosed in Jun 2014 and was declared in remission in Aug 2016, I am consider very new too in RA group. Do you mind to tell me if you experience any flare up after your remission? I would like to know more hoping to prevent the flare up to come. I do not want to go through the painful experience again.

Amy.

Gigi71 profile image
Gigi71

Dear Amy_Lee. So good to hear you are still doing so well and encouraging others too. Long may it last, enjoy your life. Love G. X

Amy_Lee profile image
Amy_Lee in reply to Gigi71

Dear Gigi,

Yes, I hope it does last. I have been searching for what next after remission to see how to maintain this forever. I hope you do well too.

Amy

Eiram50 profile image
Eiram50

Happy for you, Amy x

Amy_Lee profile image
Amy_Lee in reply to Eiram50

Thank you. Hope my experience can expire some of the patients here to look forward positively.

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