My story

[Happy5]

Having read lots of others' concerns about their diagnosis, treatment , symptoms and procedures, thought I'd write up my story which may help others on here.

My symptoms started November 2011 firstly in my left foot to the point I found walking very painful. It developed into what felt like burning in my small joints i.e. wrists , shoulders ankles, which woke me up in the night. I recall thinking I don't know what this is but it's going to kill me. Also masses amounts of my hair came out when I showered, washed it. I was abroad for the winter so didn't get to see my GP till March 2012, he sent my blood test off for testing. By July I was sent to the RA dept, where I was told my diagnosis ( me had first thought it was gout ) went into shock. Doctor told me what treatment they wanted me to start in September 2012. I explained not possible going abroad in October 2012, Doctor told me I could take medication there ( will come back to this *) I was sent for all the usual tests includes chest x-ray, comprehensive blood test, and health history checked. My GP very kindly prescribed me steroid injections to put into my buttock muscle I could do myself which I took abroad. I did one in November, next one in December, but by the end of December I was bedridden. Gone from super fit to this in a few months, so bad hubby changed the flight and I came back to the UK early January. GP visited me the evening I came home (Monday) started me on high dose steroids tablets organised an appointment for the Thursday amazing response by NHS staff.

A friend kindly took me to the hospital, this time I'd got my head round what I had, what the treatment is and how to deal with the condition, so was armed with questions written down. The specialist nurse fitted me into her lunch break, was so kind , patiently listened to my questions and concerns, answered them clearly and concisely . I apologised for taking up her lunch time with so many questions, she said no problem much better the way I was approaching things as understand the condition and treatment so know how to care for myself better. I was start on 20mg MTX that day and had it explained need to be in UK for a year so they can monitor my RA and how I respond to MTX, so much for doctor saying could go abroad*. I was able to start the MTX as nurse thought steroids unlikely in my system fully so not likely to effect the MTX .

First year (2013) was a roller coaster,with me often calling the advice line for symptoms. Nausea post MTX , fatigue , still in pain, reduced activity. Was prescribed anti-sickness meds, upped folic acid to take 6 days , not the day of MTX then put on MTX injections. One symptom was urgency to pee when first starting MTX drinking lots and body adjusting reduces this.

About 6 years after I managed to have THR both sides which meant have to stop MTX for couple of weeks, each surgery. This plus stopping MTX for vaccines , boosters , infections needing antibiotics, results in awful flares. The pain, weakness , mental distress, lack of motivation, ones round you offering kind (but useless) suggestions about diet, exercise, supplements, are all devastating and reduce you to a crying mess feeling useless. The team at the RA dept are gems and have always helped me asap, even during Covid, usual solution was intramuscular steroid injection couple of time into my left painful knee. Having my THR seemed to reduce some of my pain, I have OA in large joints and hand which is a different pain and limitation but I can manage this.

Moving on saw another delightful specialist nurse who has started me on Adalimumab injections 40mg. I also was given an intramuscular steroid injection which worked well till my new meds arrived. Prior to starting Adalimumab had to have comprehensive blood test, x-ray and health history taken.

How to administer the injections was done 23 December 2024 by a nurse via team meeting video call. Again I had my questions ready and again kindly answered. My RA feels controlled at present, new meds seem to be working, some minor usual side effects, fatigue small nose bleeds ( got them prior to new meds) runny nose, slightly headachy not every time I take Adalimumab.

So onwards and upwards my fellow auto immune people, this site and your input have been a large part of coping. Thanks for reading. 🤗

[AgedCrone]

Although being diagnosed with RA is not on anyone’s Wish List the swift treatments you found available in 2011 are sadly not usually readily available in most places in the UK in 2025. You were indeed most fortunate.

Sadly we read here of the newly diagnosed waiting months for their first rheumatology appointment.

So for those of you still waiting for that long awaited first appointment don,’t despair, the medication we have available now does tend to bring relief a bit faster than all those years ago & once you get on the treatment ladder things do get a move on. Just remember to always keep your Rheumy team in the picture…if you don’t tell your team you are struggling, they won’t be able t help you.

[Happy5 in reply to AgedCrone]

Agree 🙂

[sylvi]

When rheumatology depts work they are marvellous and if you get good care it is even better. I have had RA over 20yrs now and there will always be blips along the way. I wish you well darling. xxxx

[Happy5 in reply to sylvi]

thanks sylvi 🤗

[Womble57]

Thank you for sharing your experiences. Good to hear that you have a supportive rheumatology dept. That makes such a difference to managing symptoms and the emotional side of the diagnosis. I was interested to read about your issues with travelling and this has prompted me to update my travel insurance info.

Best wishes for continued good RA health!

[bienassis]

Well, Happy 5, what a rollercoaster you have been on! But you have survived to tell the story - and have come out the other end with some triumph. This is a wretched disease as we all know, and determination to continue the search for a suitable treatment amongst all the options available is admirable - although very tiring and sometimes very dispiriting. So well done!

I was diagnosed in 1967, so apart from “gold” injections and aspirins nothing else, except steroids, were on the cards. Things have improved and there is a good chance now of getting a successful treatment - albeit after much experimenting. And, there’s always something else waiting in the wings when you need it.

I wish you well, and hope you continue with an active life.

[Happy5 in reply to bienassis]

Merci tres gentil. Yes I recall the days of gold injections etc as you say so much progress made to treat RA. A Bientot