Advice: Hi, I was diagnosed with ra over 2 years ago... - NRAS

NRAS
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Advice

Hi, I was diagnosed with ra over 2 years ago, the symptoms had been there for years, but didnt show up in my blood. After attending the hospital they advised that I start on methotrexate, but after reading up about this drug I really didnt want to take it. I phoned to let them know this just before my next appointment, they discharged me and I havent been seen since. I have been trying to get my gut heath in order to help myself and at the moment this is helping but dont for one moment think this will help later on when the ra takes over and I have flare ups, that I will deal with when it arrives. I was diagnosed with bronchiectasis last year which wasnt a problem until I got a cold and now cant get rid of it, even after antibiitics and steriods, three lots havent shifted this out if my system. I also have acid reflux. I do wonder if there are any ra sufferers with these problems that have found anything that helps, other than the turmeric/ginger/acv etc. Many thanks

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Hi Waterdra, it can be quite alarming reading about the potential side effects of the drugs that are prescribed. However, the alternative of not taking medication would not have been possible for me. as I would have been too ill without, and not able to function. I can only speak for myself but the pain and inflammation that I had before I started Methotrexate and after a two month break from Methotrexate, is something I never want to experience again. I'm so relieved to be back on it. I feel lucky that we live in a time and a country where these meds are available so there is less chance of getting the deformities people used to get. I do hope you get another appointment so you can talk through your concerns.

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Thanks Izzyowl, so glad this works for you, as it does for alot of people, my Mum had ra very bad but couldnt take methotrexate, she was on sulfasalozine and my eldest sister is on methotrexate, seems to run in the family.

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I can understand why the hospital discharged you,as waiting lists are long so if you didn't want treatment then it's natural that they would give the time to someone else. However in an ideal world you should be seen every now and then.

Personally I think you should go back to GP and talk about this. Bronchiectasis can be associated with rheumatoid arthritis, as you know the disease is systemic and can attack organs as well as joints. If I were you I would want to be checked to see if there are signs of active disease.

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Thanks helixhelix, it wasnt that I didnt want treatment, just didnt want methotrexate and after finding out that i have bronchiectasis perhaps its as well i didnt go on it. I didnt know that it attacked the organs as well, so may go back to the doctor for a check as you suggest.

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Except that if the broncheistasis was caused by RA, then Methotrexate might have stopped it happening? But neither here not there really, as the key thing is to make sure you get checked out. I'm a bit surprised that your GP hasn't made the link if you've had several lots of antibiotics and so on.

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Dont think this was the case as I was treated for asthma for years until a scan showed the bronchiectasis up, the consultant at the chest clinic told me I have had it for years. Thanks for your advice, knowledge is important when you have problems.

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This might be of interest to you

arthritisresearchuk.org/hea...

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Thank you

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Kindly see if Smitha1521’s post ( healthunlocked.com/nras/pos... ) has some applicable bits, Waterdra?

Ditto for AARA’s post ( healthunlocked.com/nras/pos... ).

And, if interested in additional ‘rounded’/ balanced ⚖️ perspective on Methotrexate (MTX) kindly consider: healthunlocked.com/nras/pos...

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As much as turmeric, ginger, etc. can be helpful ‘tools’ to reduce inflammation/ pain for some of us, they’re not ‘standalone cure-all’s’ for managing entrenched autoimmune disease.

Those spices are merely a couple tools 🔧 🔨 ( healthunlocked.com/cure-art... ) in a much larger toolkit ⛏ ⚒ 🛠 💣 . . .

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If you can gain a better picture — a deeper understanding 🤔 — of what your body is doing, you can work effectively with your rheumatologist to reduce symptoms and even avoid the ‘anticipated disease progression’ that you refer to, Waterdra, ("later on when the ra takes over . . ."). 😳

Please, kindly take time to read Smitha1521’s post. 🧐 You may better grasp that ‘disease progression’ (RA ‘taking over’) isn’t inevitable. 😯 You can keep it ‘at bay’ & can even reverse it — not necessarily ‘easy’, but doable for some of us. 👍👍

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Yes, lung issues can improve with overall health improving — but gets a bit more tricky with the addition of autoimmune disease (& its typical accompanying meds) thrown into an already complex mix. 🙃

If you’ve an insightful pulmonologist 👨‍⚕️💨 (& rheumatologist 👩‍⚕️) aware of autoimmune disease & the complex med interplay on lungs, autoimmunity (& panoply co-morbidities), hang onto them with both hands! ✊✊

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In meantime, research 🕵️‍♀️ 🔎 , study 👩‍🏫, learn 👩‍💻 as much as you can to help yourself. 🙏

Kindly, never underestimate how improving your overall health can influence the ease of managing (& even remitting) autoimmune disease (& co-morbidities).

Breathe easy, Waterdra. 🌬💨 Wishing you the very best. 😌 🙏 🍀 🌺 🌞

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Thank you so much Kai, this is a lot of information which will take me a while to digest and very worthwhile, very kind of you . And yes I agree with you regarding improving overall health. I had a lifestyle change when diagnosed with ra, not just adding turmeric to my diet, but cooking everything from scratch and reading up about nutrition and trying to include anything that can help my gut health from kefir, making sauerkraut, live yugurts, along with herbs to taking magnesium baths and making sure I get enough exercise everyday. Think I have become an open book on anything to improve my health naturally and yes drugs have to come into it when things get serious but at the moment I am bumbling along, and finding that knowledge is the key. X

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(Very welcome, Izb1. 🙏 😌 ) Love it❣️ Yes indeed, we’re all bumbling along in funny (& not so funny) ways. 😳 The good ole "school of hard knocks"! 😖🔨 . . 😖🔨 . . 😂 🤣 🙃

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I can only repeat what everyone else says. RA is a progressive disease and it needs treatment to slow it down or put it in remission. Yes all internal organs can be affected and often with RA comes the risk of lots of secondary diseases...Sjogrens etc. Don't view this as arthritis, see it for what it is, an auto-immune disease. As you will know with RA signs are misread and so many things are seen as the enemy, therefore your body attacks itself. It is so incredibly important to get on the right meds and as soon as possible. Think of it this way inflammation inside the body cannot be seen, but you can be fairly sure that when you can see any sign of it on the outside then it is more likely to be inside. There is then a threat to your skin, eyes, heart. lungs, kidneys. liver...Yes I tell it like it is but auto-immune disease is serious and excrutiatingly painful but can be managed very very well. Get back to your GP, into the system and find a fab consultant. Hopefully you have it mild but act now as auto-immune disease has ways of surprising us. All the best.

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Thank you for your reply junean x

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From someone diagnosed in 1999, who is doing well on RTX, & is very grateful for all the treatment I have received over the years.

I would ignore your feelings about Mtx & stop reading about side effects of drugs that could or could not happen to you. Go back to your GP & ask for a referral to another rheumatology team.

I dread to think the state I would now be in had I not accepted treatment, , 20 years ago I was walking on sticks....now I can run(well trot) for a bus!

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Thank you for your reply agedcrone, so glad the meds are working for you, long may it continue.

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