Newly diagnosed,worried lady

Hi

Have been reading some of your very positive uplifting reviews, after googling since diagnosis of Soma positive erosive RA, some of which has terrified me and really upset me. I am 53, it has been diagnosed early, was in so much pain swollen fingers, pain in all joints. Had 3 steroid injections and px hydroxychloriquin which has helped immencly. I am now ready to commence px Methotrexate and have been very worried and low about taking it, my main concern is the toxic medication itself, but i have also read that it can take 10 to 15 yrs of your life, is this right? would really appreciate some straight talking advice as everyone i have spoken to skirts around this question, i think the close monitoring is grt but also enhanced my fears. When i found you lovely helpful people it was bery refreshing, its difficult to talk to my family as i am not in a good place at the minute and dont want them to see how upset i really am regarding diagnosis. Your advice and support is wecome and very much needed

Thanks for taking the time to read

11 Replies

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  • It is very alarming being diagnosed with any long term condition, especially one which is treated with drugs which have potentially harmful effects. But the result of not being treated is equally alarming (remembering my grandmother, who despite being one of the first people to have gold injections, lived a life full of pain, joint distortion and difficulty).

    Modern treatments allow many of us to live an almost normal life. You will read on here about the people still struggling to find adequate treatment and those who are having problems with their medication, as those who are doing 'all right' rarely post.

    I can remember being told that I was unlikely to live past my mid-fifties when I was first diagnosed in my thirties - but I'm still here. And my sister, who also has RD, is now 81 and about to make a tour of SW England from France where she has lived for many years.

    Have a good look at the treatments page on the NRAS site and if you are still worried, give them a ring.

  • Thank you so very much for your reply support and advice. It is lovely to know there are people out there, like your good self, who help me to put things into perspective, much appreciated x

  • I took Mtx,& three other Dmards during the 18 years I have been diagnosed...plus numerous steroid injections.

    A longtime ago I decided I know nothing about treating RA or understanding blood tests & put myself in the hands of my rheumatologist.

    Seems to have worked out for me...I reckon not stressing about pills has helped a lot.

    I am now leading a life on a par with my peers....not better- not worse.

    Hope you can come to terms with your treatment.!

  • Thank you so much for your advice and support, really appeciate you taking the time to help me, i will stop burying my head in the sand and take the Methotrexate as px. Thanyou 😊

  • Hi Cheryl,

    Hope you're having a good day.

    My wife was recently diagnosed with RA. We did exactly the same thing as you and FREAKED OUT.

    We bought an expensive house at the beginning of the year and started freaking out about how we were going to be able to keep up mortgage payments and if she was going to be able to hold down a job. Symptoms started to appear literally the week after we moved in!

    Since then I've gone deep down the Rabbit hole of RA and learned a hell of a lot about it...

    Chronic inflammation is what leads to the development of all modern diseases including RA and Cancer.

    When you read the statistic "RA sufferers on average have a reduced life expectancy of 10 to 15 years", you have to read between the lines and understand what that actually means...

    RA doesn't lead to a reduced life expectancy. Chronic inflammation leads to a reduced life expectancy.

    A massive, massive percentage of the population are currently dealing with Chronic Inflammation due to immune system stressors that are a direct result of Westernized diet, Pollution, Stress, Lack of exercise etc...

    This Chronic Inflammation may result in someone developing an Autoimmune disease like RA, or Cancer, or something less severe like an allergy or they may appear to have absolutely no symptoms their whole life and then die in their 60s or 70s from Lung Disease, Bowel Disease or Heart Disease caused by Chronic inflammation...

    RA is a Chronic Inflammatory disease which means that people who suffer from RA tend to have higher levels of inflammation in their body than a "Regular" person. This Chronic Inflammation does damage to your heart and lungs over time, which puts you at an increased risk for Lung Disease like Pulmonary Fibrosis or a Heart Attack.

    BUT...

    TRUST ME WHEN I SAY THERE IS A A HUGE BUT...

    The statistic you read online is STUPID and it doesn't mean ANYTHING because you CAN directly influence the levels of inflammation in your body with lifestyle changes. It won't happen over night, but in time you can gradually bring down your ESR, CRP, RF and Anti CCP levels.

    I would recommend you eliminate Gluten, Wheat, Dairy, Caffeine, Nightshade Vegetables, Nuts and Sugar from your diet COMPLETELY. Go total cold turkey from these foods and don't cheat. Even a small amount of these foods can trigger an inflammatory response in your body...

    I would also recommend avoiding nonsensical "Cure Rheumatoid Arthritis" online programs like that Australian guy Clint Paddison is selling. Yes he sounds very convincing and yes his plant based diet is the FASTEST way to reduce Chronic inflammation in the body, but a total plant based diet doesn't provide your body with all the nutrients it needs to heal the underlying causes of RA, take care of bone health and regulate the immune system.

    RA drugs tend to make the Liver work really hard, so it's really important that you give the body the nutrients it needs so that the Liver can function correctly. It's almost impossible to get these nutrients on a Plant Based diet, so steer clear of anyone that recommends them.

    Remember that RA doesn't influence your life expectancy, Chronic Inflammation does. If someone gets diagnosed with RA and continues to eat a Western Diet full of Sugar and Gluten then yes they will probably have a lower life expectancy because eventually the body will break under the stress of Chronic Inflammation, but that goes for everyone. Just because someone hasn't been diagnosed with an Autoimmune Disease, it doesn't mean that their body is not being damaged by Chronic Inflammation.

    Please try not to worry. I read a medical study the other day where Scientists were able to reduce the CRP levels in an RA sufferers blood by 20% in just 2 months after taking Probiotic supplements. That's without any changes to diet, lifestyle or exercise.

    20%!!!

    Imagine the influence you can have on your inflammation levels with further supplements and changes to diet, exercise and lifestyle stressors.

    Chronic Inflammation is the root cause for all the "natural" things that we die of. It literally causes everything. It causes Cancer, Lung Disease, Heart Disease and Dementia. If you live a lifestyle that keeps inflammation levels in your blood as low as possible you should live a very long life.

    There's strong evidence to suggest that innate immune system responses in RA are triggered by the dietary stressors I mentioned above. Cut them out of your diet and you should see a big improvement to your inflammation levels in time.

    Unfortunately another big cause of Chronic Inflammation in the body is stress. This is of course something that is much harder to deal with. I can't give you any advice on how to manage this better, but by being aware that stress is harmful for you, hopefully you may find away to limit the amount of stress you have to deal with in your life.

    Good luck. You will be fine. :)

  • Thank you so very much for your reply, really appreciate all your amazing advice. I do swim and walk, so my excersise regime has allowed me to remain fairly fit, sadly i had a double Whammy at once,also diagnosed with spinal stenosis, both since January this year,however, physio due for this soon. It does restrict me, regarding excersise sometimes, but i keep doing what i always have as much as possible. You have really helped me today and as i awoke tearful and worried, i now feel more positive, thanks to you. Thanks for advice re. dietary intake, i will avoid these foods, and look at foods i can eat that are both neutritious and tasty. I am a specialist nurse practitioner in Dementia/MH and love my job, was so afraid the RA would prevent me from continuing. I need to commence the Methotrexate, I keep looking at it like it will jump up and bite me. I need to take medication as i have not been offered any alternative medication. You are right of course re. stress, which of course i have been , due to all this. The have given me hope, thank you for taking the time to offer your advice and support, il try to get a grip now, thanks again😊

  • Hi Cheryl,

    It's amazing that you are a nurse! I wish I was strong enough to do a job like that. You are the salt of the earth!

    As a nurse you'll know a lot more about the depth of the Human body than I do!

    A lot of stuff you read online about Methotrexate is bad, but as a nurse you'll also know that the Liver is a very hardy organ if you treat it well.

    Methotrexate does stress out the digestive system and the Liver, causing nasty side effects in many people, but everyone is different and you have to consider whether those side effects are made worse by the Liver and digestive systems struggling to deal with a diet high in foods that put a lot of pressure on the body. [ie the Western Diet]

    If someone has a high sugar, high gluten diet, like most of us in the Western World the Liver is already struggling to function optimally. It's no surprise that adverse effects are experienced when we throw strong medication into the mix.

    If you were to cut out Liver and Digestive Stressors like Sugar, Dairy, Gluten etc etc, this would free up more energy and resources for your body to process Methotrexate more effectively, which should hopefully result in much less serious side effects.

    I believe that a double pronged attack to RA can work very well. Lighten the burden on your body by giving it an easy to digest, nutritious diet, so that the medication can work more effectively.

    Good luck! I wish you wellness!

  • Hi hope you and your wife are doing ok. I sadly had a bad reaction to MXT 10mg, vomiting, high temp, breathing issues, gasric problems. Out of hours GP said to commence normal diet, as this could have been a contributing factor, me changing diet may have been too much at once, instead of gradually, which i also thought. I then administered my seconed lot of MXT, however, again within 2 days breathing problems, nausea and also noticed briusing on my legs😔, as we know these are severe SE and can be dangerous. Contacted the nurse who told me to discontinue MXT asap, further chest Xray, bloods and Pulmonary test to be completed Mon(last one clear 3 weeks ago). In repect of the pain , i was doing ok and dont want the symptoms to return. I am hoping there is a less severe medication,that has less awful SE,that i may be able to tolerate that will prove beneficial, if you have any suggestions, would appreciate

    Kind regards

    Cheryl😁

  • Thank you for your kind words, you are very clued up in this area and i appreciate all your advice, infact i am going shopping later today to find

    alternative food products for my condition. You know what they say, nurses make the worse patients🙂 , hope your wife is doing much better

    Regards

    Cheryl

  • Hiya Cheryl & welcome, though sorry I need to say this. I do hope you find it helpful being amongst people in the same rocky boat, personal experience can't be beaten in my book!

    Now, to tackle your concern.....yes it is taboo but then everything regarding shortening of live or death is, unnecessarily so because we need to live for today not be fearful of each day. This one reason I try to avoid the word sufferer, I won't pigeonhole myself as such, yes I'm aflicted but if you let yourself be aflicted then that will surely send you to meet your maker sooner!

    One thing to consider with the often mentioned 5 or even 10-15 years (that in itself raises alarm bells for me) is as with anything like this we can't generalise or, as the saying goes, there are three kinds of lies: lies, damned lies & statistics. There will always be the exception to the rule, that's just the way, but, in some instances, depends on genetics. For example, both my parents died relatively young, both had heart disease yet one, my Dad, didn't die as a result of it. My Nan lived into her mid 80's, had RD when all it could be treated with was ibuprofen, she died of breast cancer. So, you see I have the possibility of either heart disease or cancer, if RD doesn't try me first. I don't say that lightly as we have members here who have had cancer & I'm pleased to say doing well, & are dealing with RD as well.

    I'm at risk of rambling & my siesta is beckoning so I shall list other considerations:

    Age at onset

    Lifestyle, diet, BMI

    Drug responses/remission either clinical or natural

    Negative drug response ie ILD

    Delay in referring thereby initiating treatment....effect on essential organs

    You get the idea. I'll leave you with some reading relating to Delay in referring rheumatology.org.uk/Knowled...

    I hope this hasn't turned into a ramble & I haven't frightened you, not my intention, but you asked & I hope see it's not as clear cut as giving out a figure. Oh & I've been on MTX 8 years, it's made the biggest difference of all, the meds I've been prescribed & thought I knew all I needed to know about it! I can't recall reading what you say about it taking 10 - 15 off your life though. It's concerning enough for some when Rheumy's ititiate it, still considered the gold standard treatment, I'm not sure that will ease their concern, something those of us who have had success on it attempt to do, so if you could send the link where you read that I'd be most interested. Thanks.

  • Thank you very much for info 😁 appreciate

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