RA Newbie Introduction

[ennuitude]

Hey everyone,

I'm new and kinda awkward at doing these things, but I feel like doing this will help.

I just got officially diagnosed with Sero Positive RA after neglecting my symptoms for 3 years (yikes), I'm currently on Methotrexate, Plaquenil, Prednison and Folic Acid. I've been taking them for almost 6 months now and just got my methotrexate dosage increased as my case is quite severe.

At first, when I got diagnosed I did everything on my own, didn't tell anyone, not even my mom and I intended to keep it that way as selfish as that sounds, but I didn't want her to worry, I didn't want her to bear that burden. Chronic illnesses truly makes you feel like you're a burden on others, even if they don't feel that way towards you, it's hard to shake off that feeling. Long story short, she just found out and is constantly reading up medical articles and journals and is desperate to find the closest thing to a "cure".

My Dr. thinks I might need to go on Humira if in the next two months my symptoms don't get better, and honestly I'm down to take it but I'm worried about the side effects, but does my CRP dictate whether I'm eligible for Humira?

When am I eligible for it? and do I take it with mtx and prednison? I've heard it works amazingly for some people and was wondering if I could just go on it even if my CRP isn't as bad as it used to be because I still feel some stiffness and pain?

My mother has been worried about the whole RA patients are at a higher risk for Lymphoma and wants me to get my lymph nodes checked, but what are the chances? like is it a concern now at this stage? I haven't found much information about this online.

But I've been feeling nauseous, I can barely eat and I have chronic fatigue and have no energy to do anything.

I really tried to maintain a healthy lifestyle and never skip meals but it's getting so hard with methotrexate and prednison.

If you guys have any "cheat sheets" that worked for you please help a lost spoonie out.

Much love,

Sara

[sylvi]

Welcome Sara and i am sorry you have had to join us,but you have found a lovely group who are so supportive of one another,whether they have RA or OA if you need support we are your friends here.xxxx

[ennuitude in reply to sylvi]

Thank you so much sylvi, this community really helps newbies feel less lonely

i really appreciate your message 💕💕

[Mandy8175]

Everyone's treatment varies, I am 30 years in and am on Sulfasalazine for about 8months now and methotrexate for a few weeks. I am in chronic pain and fatigue with you, you will find you magic med combo, and feel somewhat norma again! Just remember the more you stress the worse you feel!

There is a lot of support and comfort here, all you need to do is be positive!

[ennuitude in reply to Mandy8175]

Thanks so much Mandy!! thats so reassuring.

ill keep that in mind!!

much love❣️

[helixhelix]

Welcome....

I guess you're in America? The procedures to go on biologics in the US are different from the UK, and I think there's no barrier to starting them if your doctor feels you need it and you have a suitable insurance plan. Most people take it with MTX, but the idea is that your symptoms improve so much you can taper off prednisalone.

As for risks, all these drugs are worrying. However, we are well monitored and the thing to remember is that uncontrolled RA is a huge risk for heart and lung problems. Before all these drugs came along people with RA died 10-15 years earlier than is normal. I'm far more scared of the disease than I am of the drugs.

Pay attention to your body and don't wait three years if you have swollen lymph nodes in your armpits, and you should be fine.

[ennuitude in reply to helixhelix]

You're right, the disease is a lot scarier than the meds!

I will stay alert and not neglect my body.

Thanks so much!!

[AgedCrone]

Hi Sara,sorry you have had to join this site...but you will get the whole story here......most of us have "been there & bought the T shirt."

Rule Number One.....read Dr Google with a large dose of pessimism...or if you can possibly manage it ....don't read it at all. On the whole we don't know the right Q to ask, as we don't know the back story of our own particular range of the disease.....which can be affected by any other health issues you may have had in the past. ....so the answers we get aren't usually the right ones.

Please tell your Mother that there is no cure. But there is very definitely a life after diagnosis.I was diagnosed 18 years ago & it took a good two years to get on the right meds for me ....unfortunately we all need a different recipe....there is no one stop prescription.

Each of us has different needs & in almost 100% of cases the people you should listen to are your Rheumatologist & especially the Rheumy nurses....they will be your salvation many times in the future....plus everyone on this site of course!!

To be eligible for Biologic drugs you will need a Disease Activity Score of 5.1 for two consecutive months, & have failed on 2 or 3 DMards inc Mtx......different PCT's have slightly different criteria. But talk to your Rhemy nurse about that...they will explain how the decision is made to prescribe each different drug you are offered.

Lastly, don't get too despondent...now you have been diagnosed you are on the right path to getting settled on the right drugs for you. I really hope you get the right mix very soon!

[ennuitude in reply to AgedCrone]

This helped me so much, thank you so much for your words.

I think my mom is in a state of shock at the moment, so I'll give her time to process it, but I'm sure she already knows it has no cure, as auto immune diseases, especially lupus, run in my family.

I'll discuss my next course of action with the information you gave me next time i see dr.

again, thank you so much!!

[Kai-- in reply to ennuitude]

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As an aside:

Maybe the 'Lupies' in your family, ennuitude, may be interested in:

• LUPUS UK forum: healthunlocked.com/lupusuk

• Dr. Brooke Goldner's Free 3-Day Webinar, '6 Steps to Reversing Autoimmune Disease with Supermarket Foods': August 3/Thu, 7/Mon, 10/Thu 2017: healthunlocked.com/cure-art...

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Best wishes to you & your family, ennuitude. 🙏 🍀 🌺 🌞

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[ennuitude in reply to Kai--]

Kai, you’re an angel!!

Ill send it over to them ❣️❣️❣️

[Riedenise]

I can't add any more to.all the great responses you have had. Just to welcome you to our lovely site.

Good luck my lovely. X

Rie

[ennuitude in reply to Riedenise]

Thanks Rie, truly this community is so caring and helpful!!

[Hidden]

Hi Sara

I am pretty new here too, been posting for only about two or three weeks.

No two cases are the same. Blood tests don’t necessarily reflect what is going on re RF etc, as I recently experienced when in a flare but blood was ‘normal’. This in spite of formerly always showing up in blood when a flare was in progress!

As I go on battling, it seems that more questions than answers are raised if concentrating on symptoms.

But there are clues discarded by modern medicine just as a cure for scurvy was ignored, dismissed, for hundreds of years.

Your mother might want to investigate the role of mycoplasma in RA and other conditions.

If you type mycoplasma into the search box on this community site, various posts will come up.

Wishing you all the best,

Angela

[ennuitude in reply to Hidden]

Hey Angela,

Thanks so much!! I’ll definitely look into it💕💕

[allanah]

Go on the NRAS ( national rheumatoid arthritis society) website. There's loads of info there, sheets about biologic treatments. Loads of help about being first diagnosed and various options! And keep chatting here too.

[Hidden]

All good advice from very experienced RA sufferers. Especially visiting NRAS website, as well as Arthritis Care website. arthritis.org/ is based in the US, so will explain criteria for meds in the US, and there is a FREE magazine RA and you, to donload. All the best. xx

[ennuitude in reply to Hidden]

Thank you so much 💝💝

[Kai--]

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Bit more realistic hope than you may be aware of, ennuitude:

👩 Alisa (with her mum), are merely 1 example: m.youtube.com/watch?v=gkEys...(Not working as expected?)

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Plenty of young ladies managing well:

👩 Erika: healthunlocked.com/nras/pos...

👩 Lor: healthunlocked.com/nras/pos...

👩 Jenn: healthunlocked.com/nras/pos...

👩 Josefine: healthunlocked.com/nras/pos...

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More young ladies than you can "shake a 'spoon' 🥄 at" ( healthunlocked.com/nras/pos... ). 😄

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Very best wishes to you & your family, ennuitude. 🙏 🍀 🌺 🌞

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[ennuitude in reply to Kai--]

This is great!! thanks so much!!

Ill definitely share these with my mom as well!!

💕💕💕💕

[Kai-- in reply to ennuitude]

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Few more supplemental resources/ topics you & your mum may find interesting 🤔 , ennuitude/ Sara:

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💊 Methotrexate (MTX): healthunlocked.com/nras/pos...

💉 Diagnosing/ Diagnosis (Seropositive ➕ RA): healthunlocked.com/nras/pos...

↩️ Reversing Chronic Disease with Lifestyle Changes: healthunlocked.com/cure-art...

👨‍👩‍👧‍👦 Functional Medicine & Community: healthunlocked.com/cure-art...

🔬 Microbiome: healthunlocked.com/nras/pos...

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[Kai-- in reply to ennuitude]

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Frightful 😱 quantity of eye-bleedingly 👀 tedious info for you & your mum 👩‍👧 to wade through, ennuitude/ Sara, if interested. 😯

Yet, despite 'the quantity' 📚, think you'll be weeping tears of joy 😂 rather than tears of despair 😭 .

Awful lot of research 🕵️‍♀️ 🔎 , study 🤓 📖 , contemplating 🤔 🙇‍♀️, & hard, hard work 💪 ahead . . . 😯

(No shortcuts, no 'cheat sheets' 📝 — merely steadfast, solid, nose-to-the-grindstone 👃⚙️ hard work 🏋️‍♀️ 🤼‍♀️ 🤾‍♀️.)

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You can do it. 😌

You can get through it. 😊

[If you got through 3 years of disease progression — self-managing — without uttering a peep to a soul (not even your mum 👩 ) you can absolutely get through this with the loving support 💕 of those around you 👩 👩‍⚕️ 👨‍⚕️ & your own laser-focused 👁 👁 determination. 👍👍 ]

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You've got good, solid tools 🛠 , and (now) 💓-ing support from (understanding) others to set yourself on a healing path 🛣 .

Kindly consider 🤔 fully enlisting them all to help yourself improve/ heal.

Very best wishes to both you & your mum 👩‍👧 , Sara, on this life-long journey. 🙏 🍀 🌺 🌞

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Kindly bear in mind, there's so much overlap amongst 'n betwixt autoimmune diseases you may well come to the realisation 😳 that what's useful for one autoimmune disease (RA, for example) is useful for other autoimmune diseases (Lupus, Hypothyroid, Fibromyalgia . . . too many to list). 👍 🤔 🤗

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[Eiram50]

Hi sarA

I won’t add to all that’s been said but wanted to extend the welcome.

Marie