NRAS
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My Story

I thought I would share my journey with everyone.

July 2014 I was 40 and ready to have my baby. Ryan was born on 17th July 2014 & I was over the moon, I just wanted to do everything for him & I did. Ryan was a few weeks old & I could feel my wrist & shoulder getting sore, to the extent were I couldn't lift my arm up. Several days later it was gone.

Ryan was 13 weeks, his Christening was 12th October 2014. The day of his Christening, I just didn't feel right. Both my hands had swollen, they were burning hot & words couldn't describe the pain.

Since Sunday 12th October 2014, I have been crippled. I can't even hold my baby as they pain is so bad. All of my joints are so sore I can't even turn a handle to open a door, brush my hair, feed my baby (which is destroying me).

I have never been to my doctors so much in my life. I got bloods taken & they came back inflammation & liver were high. I was told I had a viral infection from 3 different doctors, all I could do was to see it out.

It was now 10 weeks since Ryan's Christening & I had been suffering the worst pain ever, I just wanted to know if it would ever go away cause I just wanted to hold my wee boy!!

Went back for more bloods in 2 weeks, results were the same.

I changed my doctor, when he examined me etc he said this is not a viral infection. As I was previously told. I was urgently referred to the hospital for scans. Got scans of my Liver and sent to a Rheumatology Specialist.

Several weeks with the specialist I was diagnosed with Severe Rheumatoid Arthritis. They said they had never diagnosed someone that fast in 27 years. It is that severe.

I've never been in so much pain in my life, it's horrific.

I just wish I could wake up one morning and feel alright to lift my baby out his cot, I was missing all that with him. It was breaking my heart. I just have to be strong and keep going, until these meds can be sorted and start working.

All I've ever wanted was my own baby and waited till I was 40 after seeing the world and enjoying my life, maybe this is my punishment for waiting.

Nearly two half years have gone buy and I am still in horrific pain, nothing seemed to work for me. Have been on Humira for a while, first few weeks were good but that's about it. I started Tocilizumab about 6 months ago and the drug is working. I've not had any steroid injections for over 6 months now as they seemed to not work as good as before. The Tocilizumab is working.

I am also on methotrexate this has caused me to lose all my long hair.

My wee boy's smile, makes me want to fight this disease more than anything for my boy, I am so lucky to be Ryan's Mummy.

I have a wonderful mum I don't know what I would have done. I can't thank her enough for helping me through this time.

Hope you don't mind me telling my story.

Catherine Thomas

Glasgow

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WOW! Don't know what to say.

But i do hope that one day that you find suitable meds, to help manage your pain.

As you say 'keep fighting'

All the best

Ruth x

In Shropshire

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Hi Catherine, your history sounds like a tonne of bricks hit you. My story is different and I've only recently been hobbled with the disease in my feet, after having this since 2012.

Almost sound like the disease was saving itself up while you did other things and then a dam of inflammation burst, right through your joints.

I do hope it is able to be controlled at least to the point where you can spend time with your child without pain interrupting you.

MJ

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Hello Catherine. So sorry to read your sad story. I too ended up on Toxizilumab after Methotrexate also made my hair fall out and my headaches far worse. Also mouth ulcers. My hair never recovered fully. Just thought I would let you know that Toxizilumab is the only biologic treatment that can work independently of methotrexate. I inject weekly and it works. Perhaps you could speak to your rheumatologist about taking it on its own and seeing whether it works for you as a mono treatment. It does make my headaches worse but works for the joints. Good luck, Dee

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Hi, KatieBirdie/ Catherine Thomas! 👋

In response to your post, "My Story": healthunlocked.com/nras/pos...

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Kindly take a moment to view Dr. Monica Aggarwal's experience:

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Cardiologist, Dr. Monica Aggarwal, Reduces Her RA Inflammation via Plant-Based Nutrition, Diet, Lifestyle: healthunlocked.com/nras/pos...

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You may gain a renewed sense of hope & realistic possibility. 😌

Wishing you the very best, CT. 🙏 🍀 🌺 🌞

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Kind regards, ☺️

Kai

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Hi Katie, congratulations on the birth of your son. I cannot imagine stronger motivation for wellness. I sincerely hope the current treatment is working for you.

Look forward to future posts 🤗

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Your story is sad and should be happy after having a beautiful child.Many people are like you.I have never held my last grandchild.She has been placed on my knee for few moments but pain so bad and no strength.I have tried methotrexate but was effecting my liver and was replaced by sulfasalazine. Always took Pregabalin send prednisolone. Tried 3 biologics that didn't work and now have hydroxychlorine added which has helped enormously. Could you try that to see if you also get any benefit. I know everyone is different and respond to drugs in other ways.

I agree about steroid injections. First one was amazing but next ones seemed to lose their fizz

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Hello Katiebirdie.

I have been an active observer of this forum for just over a year and tend to read it to see others experiences and in many cases retain motivation. I have never posted until now and only because my situation is identical to yours ie. RA began after I stopped breastfeeding my son and it stopped me from being able to do the things you mention. I'm not interested in why this happened because it did. The purpose of my post is solely to say, you are not alone and that this forum is a place to find inspiration and share frustrations and joy.

My son is now 24 and I went into remission when he was about 2 until 18 months ago so had 20 years of 'normality'. The meds that worked for me back in the old days (Sulphasalazine), didn't touch my inflammation this time so it shows that not only what works for one doesn't for another, but even within the same knarled body, it can react differently over time.

I wish you all the very best with Ryan and it's very clear you are and will continue to be his wonderful mummy.

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Hi Catherine.

I'm so very sorry to read this and hear you are going through this.

I can relate to your journey as I too was diagnosed after having a baby aged 32, I must of gone to the Drs 6 times before I was given a referral to rheumatology which took over 3 months. The Drs told me they thought it was a virus too. All the time I was getting worse and worse and was really struggling to lift and carry my little girl, I was in agony. Once I saw a rheumatologist it only took a few mins for them to confirm I had RA from my symptoms and my bloods were sky high.

It took a while to find the right medication for me and also a change in hospital (at least 2 years) but once they did, i was so much better and I got on with my life. I work part time, run around with my daughter.

Unfortunately 3 years on, the wheels have started to fall off a bit and I'm having an horrible flare up which doesn't seem to be going anywhere . I used to visit this forum daily when I was first diagnosed and everyone was so welcoming and lovely. They really supported me. I haven't really been on the forum for the last few years but I've found myself here today and read your post and had to reply.

I really hope your current medication helps you and things settle down. I m thinking of you. Once my daughter got a bit older and went to nursery it gave me chance to rest more and once she started school I had 2 days to rest which gave me more energy for the other days. I found swimming really helped, or even just floating and a jacuzzi afterwards.

Take care, lots of love Claire

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omg what a sad but strong story don't loose your fight my love keep going to your doc and hospital appointment and tell them what you want remember you pay there wages my love push them to get more tests and try better drugs that work I was dignosed in 2014 after 3 different doctors telling me I was to fat for my legs to carry me as I was 12.5 stone on a 5ft 3 body after suffering to long I went back and said its not my weight and cried at them to help me eventually they gave me the test and my infamation should of been between 4 to 6 mine came back 234 they got me to the ra specialist straight away it took a while but I was better not pain free but better still managed to keep working as a night care assistant but then 4 weeks ago went to work as normal by my shift end I could not walk I could not sit I was in so much pain it was mad now I'm starting another drug in injection form as ive progressed a bit future on in my ra journey its so hard to describe the pain as well but my darling get everythink your intitled to ra is a blue badge illness help with the parking at the hospitals and I wish you your baby all my love x

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Its s shame we didn't know each other back then. July 2014 I was 43 and ready to have my first baby. He was born on 19th July 2014, with an emergency c section. 8 weeks later my hands and wrists started to hurt. I was referred to a rheumatologist very quickly, and I was on Methotrexate within 3 weeks. I've had the same problems as you with finding it difficult to pick up my son since then / get a pram out of the car / get him dressed / SOCKS - OMG etc. My 9 month maternity leave was hell - very lonely and depressing and frightening taking the Methotrexate every week and researching all the side effects... My story followed a slightly different route to yours after that point - I've always struggled with the diagnosis, felt it may be something different than RA, and investigated different avenues with my rheumie and other specialists. I still don't have an answer that my rheumy is happy with / accepts (although I think he's beginning to doubt to RA now). Bacterial and viral infections have also been suggested by other specialists. I'm not on any drugs at the moment (at rheumy's recommendation - "waiting to see what happens"). But still in pain in hands, wrists, knees, shoulders etc with supposedly different innocuous causes for each different thing, which seems weird. I was a fit as a fiddle pre July 2014. I'll PM you sometime to compare notes.

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