NRAS
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I'm new here.. trying to deal with all the aspects of RA

I was diagnosed with JRA at about age 2.. the flare ups returned in jr. high and throughout highschool, I couldn't even participate in my required P.E. classes. Due to the severity of the pain and flare ups I finally went to seek medical help. Thanks to my destroyed records from my first diagnoses I was back at square one and docs were no help (" you probably sprained your ankle" let me note I didn't do ANY extraneous activities). One doc tried to diagnose me with lupus which finally led me to a RA specialist in 2015. Again i was diagnosed with RA. Here I am 2 years later at age 21 finally looking into treatment to put my RA into remission. Doc started me on Prednisone and it did WONDERS physically, but greatly affected my mental health, I found myself yelling at my loved ones and I was not myself. Then we tried 15mg of methotrexate.. horrible horrible. I felt hungover every day, and like a zombie. Then I had a flareup so they upped my dosage to 20mg and after that I noticed a big mental shift and I literally didn't want to live. The depression hit me so suddenly. I made the personal choice to stop it because I rather feel like me then what meds shape me to be. I've lost a good 20lbs within the past 6 months due to vomiting, nausea, and loss of appetite from the drugs. I've been prescribed hydroxychloroquine but I'm holding off till an eye appointment in February because my RA specialist is concerned that I may have uveitis and I read hydroxychloroquine can cause eye issues, so better to be safe then sorry right. Since I have been off the methotrexate I've been lucky enough to not have a flare up and I'm happy that I'm me again. But now I'mat the point where I don't like the idea of trial and error, I don't want to take 6 months after 6 months trying to find something that'll work, but I want to be able to walk and run and dance and climb mountains. I also don't want to be on meds the rest of my life and it is so so so hard to have this constant reminder that I have to have this battle for the rest of my life and I'm only so young. I'm not sure how to cope. What scares me most is the emotional effects of RA itself and the mental side effects of drugs, because so far I haven't had much luck..

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I really can’t imagine being your age and having that prospect ahead of me! As a newbie with RA at 52, I feel like 70. All that keeps me going is knowing that there have been many advancements as to RA meds. My Rheumy feels that the new meds will allow me to live a “normal” life once the flares are controlled and I look forward to that very much!! Hang in there! It’ll get better as I know others on this site will confirm! ❤️

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Kindly consider Katy’s 👱‍♀️ experience ( healthunlocked.com/jia/post... ), as well as Jenn 👩 , Cole 👦 , & Joseph’s 👱‍♂️( healthunlocked.com/nras/pos... ), mjhodges. Have learned much from them about dealing with all aspects of RA. 😌 🙏 Think we all have an awful lot in common. 😳

Abundant, realistic hope, mjhodges. ☺️ Wishing you the very best, dear heart❣

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🙏 🍀 🌺 🌞

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Have you tried ginger root, I find it very good. You can buy it at any super market, l peel it slice it put in a jug and fill with boiling water, let it cool and drink a cup full three times a day. There are a lot of antiflamatorie foods out there it’s eorth trying. Good luck

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I feel like that too. The mental side is actually harder sometimes than the physical pain. I have been incredibly low. I’m 7 months into diagnosis and 49. The first two drugs didn’t work (had to wait 2 months each time) and so now I’m on methotrexate 8th week. Yes it is trial and error. Yes the process is shite. But the drugs halt the progression so you have to give it time. It’s not a quick fix. But if you get the right thing now surely it’s worth it. If you decide not to go the drug route you may make things worse.

RA never goes away but it can go Into remission for years. So even though I’m at my lowest point and it has changed my life, I have to keep trying until something works. Xx

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Merely as clarification (underscoring a ‘fine point’ ___🖋 ), 💎💎’s — just in case there’s confusion 🤪 🤷‍♀️ 😧 / misconception 🤨 🙅‍♂️ 🙃 floating 🎈 about . . . 😳 🤔

At times, there seems to be a perception 👓 👀 that there’s only 2 separate, distinct routes (treatment paths) to choose from:

. . . 1️⃣ ⚫️ Allopathic 👩‍⚕️ 👨‍⚕️ med/ drug route 💉 💊 .

. . . 2️⃣ ⚪️ Non-drug/ non-med route, practicing solely ‘non-drug’ approaches (such as, foods 🥗 👨‍🍳 👩‍🌾 , lifestyle 💃🕺, 🧘‍♀️, 💆‍♂️ , 🧖‍♀️ , etc.).

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Merely for clarification, just in case anyone misperceives 🤨 🧐 these approaches as being separate ⚫️ , distinct ⚪️ black & white (◼️◻️) practices that never cross paths 🔀 or overlap 🔁 or work in tandem 🔄 :

They’re not mutually exclusive ⚫️⚪️ ( healthunlocked.com/cure-art... ). 😌 🙏

They’re not ‘either ⚫️/ or ⚪️’ approaches. ☺️

They work together integrated 🔘 🔳 🔲 , hand in hand 🤝 — overlapping 🔀 , intertwining 🔗 🖇 ➿ , intermingling ☯️ . . . 🤗

(Merely explicitly noting 📝 in attempt to minimise any misconceptions 😲 🙅‍♀️ 🤥 floating about.) 😌

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🙏 🍀 🌺 🌞

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Good for you, Jules13. That’s what we all have to do, but it’s so much better knowing we’re not alone! ❤️

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I'm so pleased to see this reply Jules. Your experience like many others is that it's trial & error, that the first med tried isn't necessarily the one that works unless you're one of the fortunate ones. We know how it's affected you yet you're here, advising, giving your experience, recommending that, certainly upon diagnosis, meds are very important if we're to have any chance of stopping this disease romping away.

Lovely to read your final paragraph too, you will get there, many of us have even if we go off the rails now again, it's the nature of the disease unfortunately but thankful we rarely see the destruction from years ago before our Rheumy's had the options to treat nowadays.

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My gp friend said to me last night “Jules, you know it will get better and that’s all you need to focus on”. It may take 3 months, it may take another 6 months but eventually something will work. I have to believe that. X

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She's correct, positivity never brings you down! x😘

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Hi, sorry to hear of your experiences, that must be tough. I think the best advice I could give would be to try and take it one thing at a time - difficult I know because it seems so over-whelming, but if you try to concentrate on one issue at a time instead of thinking/worrying about every aspect it can be more manageable. I got myself into a bit of a stressed mess initially, but learning to deal with it a bit differently now and it is making a difference.

The meds... yeah, can be hit or miss and yes, the thought of being on meds for ever is a horrendous thought, but try n not think about it, concentrate on working with your docs on finding a combination of what works best for your body. I was given several different meds, some worked OK but weren't enough and the disease was progressing so others were added and now (6years after diagnosis) the meds I'm on now seem to be keeping the disease under control - which is brilliant, fingers crossed it continues.... I'm on hydroxychloroquine, sulphasalazine & a biologic. Methotrexate didn't agree with me so I came off it. I refused to go on Biologics initially - didn't want anything with such horrendous potential side effects in my body. I tried going down the homeopathic route for almost a year but I was getting worse and so I had to be sensible and start on the Biologics. I was so busy worrying about what things could go wrong I hadn't even considered that they might actually HELP!! Which is what they did do eventually :)

The mental side can be tougher than the physical. For me it's been almost like a death - the death of the person I used to be & the arrival of somebody I wasn't happy with. That was tough - still is on occasion. I think counselling can help - the folk closest to us generally don't understand so talking to a complete stranger can be a good thing. Meds for anxiety/stress can also be beneficial to help make you want to get up in the morning if nothing else. Once you're up, it's easier to keep moving but the 'getting moving' (mentally & physically) can be tough.

Trying not to think of everything you CAN'T do makes it harder, try and think of the things you CAN do or find new ways of doing what you enjoy doing. I used to do a lot of running, but everything hurt so much I gave it all up - which made things worse, mentally and physically. I later discovered pilates, which was a bit of a life saver! It was something I could do which felt good and it didn't put any pressure on my joints. Swimming also became a life saver.

Learning to pace yourself is another biggy! It's understandable to want to chuck everything because it's too sore or tiring, but if you're giving up things you really love it can make you miserable. So if you're able to still do some of the activities but only do them for a shorter period of time, and maybe 50% instead of 100%, it's frustrating, but at least you're still doing things you love...

RA is a demanding sh*tty madam, but if you take things slowly, find your limits and work with the docs to find the right meds, you can recover some of the control and feel better about you and your life. It all takes time, adjustments and looking at things differently, but I think it is possible to get back to enjoying life and finding ways to keep the 'demanding madam' under control :)

Sorry for the huge rabble, hope some of it made some sense.... Good luck, hang in there :)

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**wee error..."Trying not to think of everything you CAN'T do makes it harder" that should have been "thinking of everything you CAN'T do makes it harder"**

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No you’re right. It is a mourning period. I went through the same mourning when I had my knee and thigh surgery. I can’t do any of the sports I used to do... tennis, skiing, etc. So I mourned the loss of my old life. Ironically they think that the trauma and rehab of that surgery could have triggered the RA. great!!

I do miss my old life. But I also do still know that I will get better. There is hope behind the sadness. X

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It sounds as though you've not had the best of experiences & at your age too, that's really such a shame. You mention trial & error, well along with being an invisible disease it comes as part of the deal unfortunately because as much as each of us are different so is the disease & the road it takes us down. This means that there's no one treatment for all, we sometimes have to try a few, or many, before the one is found that we respond best to. For example, I am on methotrexate, have been 8 of the 9 years I've been diagnosed, though my first DMARD was hydroxychloroquine. I've also tried sulfasalazine & leflunomide, both of which I had bad reactions to. So you see, 4 DMARDs in & I'm reasonably well controlled but still have iffy days, I've come to accept it's par for the course for me. I've also been on steroids for over 4 years, tried tapering once without success & recently had to withdraw another taper due to stopping the LEF.

It may not take as long as 6 months to determine if HCQ is the one for you, you've had one bad experience with MTX, that's such a shame, but don't let that one experience deter you from all meds because those together with a good balanced diet & exercise could be all it takes for you to become controlled, positive thinking eh? You'll be up dancing, walking, maybe even running though not too sure about the mountains until you're well enough controlled, something to aim for through isn't it?! Til then try not to lump all the disappointing thoughts together, there are positives they just need to be found. Some say it's a grieving process & if that's how you feel allow yourself to grieve but don't let it take over, just pop on here & talk if you feel low, there's always someone here who'll relate to how you feel.

The main thing I'd like to say is talk to your Rheumy, show him or tell him what you've written here. It could be he's unaware of how you're feeling but please don't not take your meds. I know you're waiting until you've had your eye test before starting HCQ, that's the right thing to do, but give it a good go, it can be a good med, it was for the first year after diagnosis for me. Are you starting on full dose, 400mg? If so I was advised to take 200mg with breakfast & 200mg with my evening meal. If you're taking a ppi (omeprazole or similar) it's recommended you leave 4 hours either before or after taking HCQ.

I hope some of this helps, that HCQ works well for you & you start to feel more like you wish to.

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I've been off MTX for about 2 weeks now and I'm lucky enough to say that I haven't had a flare up or pain since. My ankle is a little tender at times but I actually have full range of motion in it now too. For the first time in forever I feel like I don't even have the disease, cheers to that! I know it's likely to not last but its made it easier to take things day by day. Thank you all for the positivity, and suggestions!

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