Newly diagnosed

BBJ

Hi All

Mine feels like a complicated journey but relatively quick compared to some.

I started off with a cold I couldn't shift, last March which was very unusual for me. Then I developed sinusitus for the first time ever. Then I developed pain behind both eyes. After a fruitless eye test with Specsavers I developed redness in my left eye which was diagnosed as episcleritis then, I began to get pains in my thumbs, then other fingers then my wrist then my foot, then finally swelling in the thumb and fingers of my right hand.

I contacted my GP about the hand pain in December. Following a referral to a physiotherapist, then blood tests recommended by the physio, a referral to rheumatology with more blood tests, a urine sample, x-rays, an ultrasound (which identified osteoarthritis) and a urine sample being taken and then a gap of 6 weeks to see if it might get better on it's own (as the previous blood test didn't identify inflammation) during which my left wrist decided to go on strike along with my right ankle (which eased off after a few days thankfully), then back to rheumatology yesterday when I was formally diagnosed with RA.

I was immediately prescribed Methtrexate. There was a bit of to-ing and fro-ing in the discussion with my consultant as they're not certain of the impact that this will have on the efficacy of the Covid vaccine (I've not had my second dose yet) but I decided to start the treatment immediately in case I struggled to get a rheumatology appointment after the jab. I read the horrific patient leaflet then took my first dose at bedtime as advised by the nurse. Had a minor panic attack (that is one scary leaflet) but managed to wake up alive which was a relief.

I think what I'm looking for here is some hope. In the past if I've abused my body it suffered. When I took care of it, it responded. The past year has been the first time in my life (apart from a genetic condition resolved through surgery) that my body is doing it's own thing regardless of my actions or inaction. I would really like to know that I'm not as powerless as I feel. I've given up booze and aspartame (more or less!). I've even started eating kale. I started taking supplements but I might have to rethink that as my vitamins contain folic acid which I've also been prescribed. I think I just want to know that there are things that I can do to make this better, or at least prevent it from getting any worse.

anneb82

Hello @BBJ

Welcome to the online community and thank you for sharing your story with us.

It sounds like you have had a difficult year. It started with a cold last march that you couldn't get rid off, which developed into other conditions. You developed various joint pain and after contacting your GP's and having physio, you were finally sent for further tests and then finally referred to Rheumatology. You have now been diagnosed with Rheumatoid Arthritis and have been prescribed Methotrexate, which you were concerned about taking after reading through the patient leaflet.

I can understand your concerns, it does sound scary and can be a lot to take in especially after the news of your diagnosis. It does get easier though and you will find that you have a tonne of support at your finger tips with this forum if and when you need it.

Ive included a few links below that I think you may find useful.

https://www.versusarthritis.org/about-arthritis/conditions/rheumatoid-arthritis/

https://www.versusarthritis.org/about-arthritis/treatments/drugs/methotrexate/

https://www.versusarthritis.org/about-arthritis/living-with-arthritis/

I hope that they are of help to you. Please continue to join in on the forum and let us know how you are getting on.

Take care

Anne (moderator)

frogmorton

Hello @BBJ

I loved your story which actually is similar to mine although more squashed together!

My episcleritis was just after tonsillitis the inflammatory arthritis probably a year even more later.

You write well and made me smile "....Had a minor panic attack (that is one scary leaflet) but managed to wake up alive which was a relief...."

It is one scary leaflet indeed, but you are here to tell the tale.😁

Give your meds a chance to work then you can and will repossess your life to a very large extent. I thought my life would never be the same again, that it was over, that i was ruining my husband's and children's lives..... I stopped making plans in case I couldn't do this or that too🙄

BUT here I am many years later still on my feet (more or less) still exercising daily (more or less!!). I no longer overthink the future the way I did in fact we bought a motorhome and intend to do some travelling. I have made adjustments along the way (and still have the odd glass here and there!), but in general life is GOOD!

Take care and any MTX issues post on here we'll alway help if we can.

Lilymary

Hi @BBJ , you know you’ve reached the brink of desperation when you start eating kale! I do hope the drugs start working for you soon. As @frogmorton says, your journey now may be different from what you had planned, but that doesn’t mean there won’t be new pleasures and discoveries, even adventures, along the way.

Farahoff

Dear @BBJ ,

I am new to this community and only signed up to it on Saturday after a horrific flare up on Friday night. I was diagnosed with RA almost 5 years to the day. My symptoms started with a terrible cold which I couldn’t shift and then severe pains in my hands and wrists which ended up with me going to A&E on a couple of occasions until my GP finally had my bloods tested for inflammation which came back positive. I too went in Methotrexate immediately for two and a half years. I can’t say it made me feel much better (let’s just say some of the things on the leaflet came true for me). I spent most of those two years in and out of the rheumatology department getting steroids injection or starting a course of prednisolone. After those two and half years a rheumatology consultant switched me to to Sulphasalazine and Hydroxychloroquine which seems to suit me a lot better. On top of that I have quite a restricted diet (mainly plant based with occasional fish), no gluten and limited night shades and limited alcohol. I found white potatoes are a severe trigger for me. Nowadays, I am down to mild flare ups every 3 months. Except for this Friday, which was the third worst one in memory. I had my first vaccine jab 9 days ago and I can’t help thinking it may have made my immune system go a bit crazy.

Anyway, I wanted to say that you are not alone. RA is hard. I’ve always been quite a healthy person so it has knocked me for six. Not knowing what each day is going to bring. Some holidays completely ruined because of a flare up. Crying in front of my kids and husband when I pride myself on being the strong one.

I hope you learn to live with RA as I and lots of us have done. Also, learn to listen to your body. Good luck with everything!

BBJ

@anneb82 , @frogmorton , @Lilymary and @Farahoff

Thank you so much for the lovely welcome. My apologies for the delay in getting back to you. It's great (but also a bit sad) to know that I'm not alone and it's pretty startling, to hear that others have had similar experiences to mine, the episcleritis, previously being ridiculously healthy. I told my rheumatology nurse that I'd always been an overachiever, my immune system included!

I did some more reading today. some of which made me fearful and a little tearful. It is scary feeling like things are happening inside my body but outside my control. but I continue to make changes to be as healthy as I can. Stress is the toughie but I'm working on it.

I do have good news though, after a bit of to-ing and fro-ing the NHS has agreed to bring forward my second covid-19 vaccination so they'll only be 4 weeks apart rather than 12. It was nice to be heard.

I have the week off work so will do some more looking around here. Thanks again for being so welcoming xxx😊

Veemo

Hi BBJ

I only found out about here and signed up the other day having had my life turned upside down with RA and osteoarthritis in the last year - with lockdown thrown in for good measure. It really does help to know that other people feel the same about it all . I've been healthy all my life until now - I worked on a farm and could match the men in strength (well, some of them!) in my heyday - now I have to get my husband to open childproof bottles for me! I've never been a drinker (got drunk once when 21 and didn't like not being in control of my actions) and I hate being a passenger in a car because I like to be in charge of my own life (!) - and suddenly I'm not anymore! Only positives so far are that I lost one and a half stone in the first month of my RA flare - and only put half a stone back on (feels good!) and I now have a disabled sticker and can park on the double yellow lines outside of the dentist instead of panicking to find a parking space!!! Every cloud......! Hope things improve for you - I'm more positive than I have been, but still get depressed at times.

frogmorton

Hi @BBJ

Thanks for getting back to us and thanking us it's nice to know when people appreciate our replies. I am glad you have been reading, but remember not everything that could happen will happen to you.

Like @Veemo and yourself i was always proud of my immune system - I never got cold etc or the two-bob-bits when the kids did but such is life.

What you both are maybe doing is grieving a little for the lives you had planned and envisaged (yes you had we all do!!) and start living the new life. There are definitely adaptations to be made, but for me it has and is being good🙂

I hope to see you both posting and supporting each other too. That's what this community is all about.

Take care