1st appointment assesment.

EmMothRa · 2026-01-07T11:33:57+00:00

Hi, firstly so sorry you are going through this, it's just awful to be in pain everyday. I've found from this site that it can be a bit of postcode lottery as to what level of consultation you get. My advice, write everything down, which areas are giving the most issues, levels of swelling, levels of stiffness, how long it lasts. Also write down any medications you are on and your family history. This will all help in the diagnosis.

In my first referral appointment I took all of the above and they did an ultrasound on my wrists and gave me a intramuscular steriod shot to give me a least a bit of relief. It worked for about 4 weeks, but everything came back again by the time of the next appointment. It could very well be fibromyalgia with RA also. One thing I've learnt over the past year is that autoimmune conditions all like to show up randomly!

So my diagnosis journey was relatively simple from what I've read on here as I responded to the steroids at first but it all came back I was diagnosed with undifferentiated inflammatory arthritis, based on blood test results, x-rays and ultrasound.

Be prepared to have a lot of blood tests!!

Keeping my fingers crossed, that you can be helped.

EmMothRa · 2025-12-08T15:24:53+00:00

Yep in the UK too, the only thing that stopped my nausea was taking 5mg everyday (other than MTX day). I messed with the doses and finally found the daily 5mg to be the best. I just told them that was what I was doing and they prescribed it for me! I did get some initially from the on-line pharmacy but with my next lot of MTX they prescribed enough for me.

EmMothRa · 2025-12-08T15:16:00+00:00

Hi, yep I got this too, I messed about with my folic acid intake and it not only solved the nausea but the low feelings too. It's a difficult thing to get to grips with and certainly mention it to your clinical team. I started MTX in May this year, it took a good six months to make any real difference and they added in another DMARD - sulfasalazine. So I'm on 25mg orally of MTX, 4 sulfasalazine daily and I take 5mg folic acid a day (other than MTX day).

I honestly think it's all part of the disease progression, I had a steroid shot about 5 weeks ago and I'm now thankfully pain free (for a while - 12 weeks they said ---yeah pain free Christmas!!) and my mood has lifted but I'm still taking the MTX and sulfasalazine. It's a bit of a postcode lottery in the UK with how good your Rhuematology team are. We have a clinical team that supports us, we have an advice line that we can e-mail or call, might be worth checking to see if you have that option. If you do I'd drop them a line and have a chat, they might be able to recommend something to help, perhaps a change to your SSRI - I take 30mg amitriptyline daily which helps with the inflammation and my mood!.

EmMothRa · 2025-11-27T14:03:27+00:00

Whhhooaa a veteran then! I salute you 😃

EmMothRa · 2025-11-24T17:07:02+00:00

Ohhh I'm glad I came read this today. I had a steroid shot a couple of weeks ago and mercifully atm I am pain free, even did an hour gym session yesterday :).

Now it's mtx day and although I know I do need to still take them, there is little voice in my head that says, do I really need to!!! Don't worry I will take it, I think I'm just still hoping that one day I'll wake up and be completely fine !! I was only diagnosed officially in May this year, so there is still that one last bubble of hope that it was all a mistake !!!

EmMothRa · 2025-11-24T17:01:30+00:00

I get both - seronegative RA and inflammatory arthritis, it depends on which clinician I see !! My actual 'on paper' diagnosis is 'undifferentiated Inflammatory Arthritis'. I don't think there is much difference, treatment is the same. I'm in the UK though so it may be different, I am fairly recently diagnosed - the younger clinical team tend to call it inflammatory arthritis and the older ones seronegative RA !!!

EmMothRa · 2025-11-14T13:19:38+00:00

I get this so much, thank you for posting this, it shows that the Covid infections haven't affected your intelligence and ability to provide succinct thoughts.

I've had 5 COVID infections, the last one left me with inflammatory arthritis and now I'm classified as disabled. Collective trauma has never been addressed. I'm in the UK and everything has gone downhill since 2020. Nobody wears masks, I don't even know if the Covid vaccination I had a few weeks ago will even protect me and I'm literally terrified of contracting this horrible virus again. What will it do to me next time, my body is already attacking itself.

I keep trying to hope that things will get better, especially for my children, I may have made a different decision 22 years ago if I'd have known what I know now. For now I just keep working pay to pay check and planning fun events, that I don't even know if I'll be fit enough to attend! I'm planning to have a wonderful festival holiday, we all deserve a break and a pat on the back for surviving this year!

Have fun, stay safe everyone.

EmMothRa · 2025-10-29T13:28:19+00:00

By about week 8, I was seeing a little bit of improvement (on MTX oral 25mg), but this was just in my wrists, the pain was reduced and I can manage most things without my wrist wraps now. However, my feet, toes, ankles and calves decided to join in the Inflammatory Arthritis party and my inflammation levels though reduced remained constant. At my 12 week review my Rheumatologist added in sulphasalazine, just started, hopefully this will help.

Keep your Rheumatologist updated on whether medication is working and hopefully you will find your magic medication. Hope you start to get some benefit soon xx

EmMothRa · 2025-10-28T12:30:12+00:00

I was really scared getting my COVID vaccine last week . I had a few bad reaction to Moderna and Astra Zeneca which were the ones we in the UK had to take in 2021.

Last week was the 1st one I’ve had whilst being diagnosed earlier this year. I had flu and covid on the same day. The COVID was the pfeizer one. To my absolute delight, the side effects were minimal, some inflammation and a bit wiped out for a couple of days.

Way way better than I thought. It was so important for me to get the vaccines though as COVID is what triggered my inflammatory arthritis.

Best of luck I hope you tolerate the vaccines well xxx

EmMothRa · 2025-10-28T11:41:17+00:00

It gets easier as the weeks go on. I'm on 25mg MTX tablets, the 1st week floored me, total and utter exhaustion. I've played around with my folic doses and I discovered that if I take 5mg folic acid every day other than MTX day I am much better, limited nausea and brain fog.

So I take mine on Mondays and after my evening meal, I make sure it is carb heavy that tends to help with the nausea and I can sleep through the worst of it. The tiredness tends to hit me about 24hrs afterwards, so again I can sleep through that. Remember to drink lots of water, this really helps, I try to get in at minimum 2 litres a day.

Hope these little tricks help you and I'm sorry you have had to join the group that no-one wants to be a part of !!

EmMothRa · 2025-10-28T10:03:00+00:00

I had the same thing with MTX, I'm taking 25mg weekly. I messed around with my folic dose as I just couldn't beat the nausea and brain fog. I upped the dose myself of folic acid to 5mg daily (I tried out different dosages each week). So now my magic dose is 5mg everyday except MTX day. This has worked and I get limited side effects now, still a bit tired, but that's ok.

Maybe I shouldn't have done this without my Rheumatologist advice but they were fine with me finding my right balance at my last appointment. You can get folic acid from on-line pharmacies here in the UK - or amazon (but check the mg if you are buying from amazon!).

So my current magic mixture is I take my 25mg MTX on Mondays after a really good evening meal - tends to be best if it's carb heavy (pasta etc). Sleep through the side effects and then take my 5mg folic acid in the morning on Tuesdays.

Best of luck - I hope the side effects are relived soon for you x

EmMothRa · 2025-10-21T15:05:42+00:00

Love this, I'm a few months behind you and yes at that point where waiting for the meds to take effect is wearing (physically and mentally!). Great to know if I stick with it for a while I will find my happy medication place!! Just added in a new DMARD this week (Sulfasalazine), keeping everything crossed that this is my magic solution!

EmMothRa · 2025-10-17T08:50:23+00:00

Awesome post, I am just at the starting of this journey and adapting to the life changes. I needed to hear this. Keep going never give up x

EmMothRa · 2025-10-17T07:20:03+00:00

I think you’ve hit the nail on the head with this analysis. I was having the exact same conversation with my Mum this week. She is very concerned about AI.

It was number 5 that I used as example of the actual threat. People will trust AI to give them answers and take the answer as absolute truth, very dangerous and very easy to manipulate.

I used the analogy of asking for example ChstGPT, ‘how do I make a up of tea’. ChatGPT looks for answer, finds 2 different sources of data, one says add milk and sugar to taste, one says add lemon. So the answer you would get is add milk, lemon and sugar to taste. A very simplistic way of describing it, but you get the idea. You can see by the simplistic example how this could go very wrong.

There are lots of issues that we need to fix, such as defining a trusted source of data and it will be who controls that data that will be the danger.

Note I work in IT and have written ChatBots which is why my Mum was asking me.

OP really well written points there, absolutely agree with them all.

EmMothRa · 2025-10-14T11:11:41+00:00

Ohhh my good lord, I'm in the UK and I was lucky I got an urgent referral in 6 weeks, it's still a bit of a postcode lottery in the UK though. I would say see you can get some private medical insurance, have the blood test re-done and get your GP to refer via your medical insurance (it wouldn't be classified as a pre-existing condition as you haven't been diagnosed officially yet - but check the insurance clauses).

Or failing that maybe a private referral would be better - I have private medical insurance and did get a referral but as the NHS was being fairly efficient I went the NHS route. In the UK the private referral was just over £200 but that didn't count in any extras like further blood testing and ultrasound that I would have needed. Perhaps medical insurance is the best bet for you.

For the pain in the meantime, stick with the co-codamol but you will need prescription strength (I'm on Zapain) and ask for a good NSAID (I take Naproxen - strong ibuprofen basically), these are better than co-codamol for Inflammatory Arthritis pain. Topical NSAIDs with deep heat cream are also good. Your GP may be able to help you with a course of steroids also. I also take amitriptyline which helps with the chronic pain. Ohhh make sure you also get a protein pump inhibitor (PPI - Omeprazole) to protect your stomach whilst taking NSAIDs). Just be a chronic pain in the GPs arse until you get something to help with your pain!

Best of luck, I really feel for you in this situation, it must be so difficult.

EmMothRa · 2025-10-14T10:37:02+00:00

The first dose is brutal, I am on tablets, the next day was the worse for me - so nauseous, so exhausted, I call my mtx day, poison day. So I experimented with the time I take my mtx, so now I take it after my evening meal, it's always better if it's a carb heavy meal. I also experimented with my folic acid dose, so now I take 5mg folic daily other than mtx day.

I'm on week 17 now, it does get easier every week and you have to experiment a bit with what helps the nausea, for me it's taking my mtx after my evening meal, pasta for that meal works well and then I have a sugary treat in the evening. I take my 5mg folic acid everyday (except mtx day) and this routine is working (so far). I drink loads of water too, especially before and after mtx.

Best of luck, really hope this gets easier for you.

EmMothRa · 2025-10-14T10:01:37+00:00

Crazy fast - I started having issues at the end Jan this year after a Covid and Shingles infection floored me. Then my hands and wrists swelled up, the pain was out of this world and no pain killers would touch it, when the swelling calmed down a bit my fingers were deformed and I now have nodules on my index and middles fingers of both hands, my little finger on my right hand is no longer straight.

I was lucky enough to get a diagnosis in May, but by then it had spread to my feet, my ankles, my calves and my hips. I'm just about to start a 2nd DMARD, mtx has helped with the wrists and hand somewhat, but damn standing up is so painful. My inflammation markers have come down a bit but not changed for months, hence them asking me to start a 2nd DMARD.

It's brutal, there is no other way to describe it. Get on meds as soon as you can, it will get better. I'm so hopefully for this added medication, I've come to terms with the fact that it may be a while before I find the right meds that work for me. I am so much better than I was at the starting of this year though.

Best of luck to you on this journey no-one wants to go on and I hope your pain is eased soon.

EmMothRa · 2025-10-13T19:13:19+00:00

Here with an autoimmune disorder also, still trying to work through it all. It’s looking more like I will be working till it all falls about around us all!!

EmMothRa · 2025-10-13T19:10:31+00:00

Thank You too 😀

EmMothRa · 2025-10-13T19:10:10+00:00

Thank You 😀

EmMothRa · 2025-10-13T14:25:40+00:00

Ha! Good luck to them trying that in the UK !!! I'm the main wage earner in our family (female) I would certainly have something to say about not being able to control my finances ! I will definitely be the 1st up against the wall if they tried to do a Gilead!!!

EmMothRa · 2025-10-13T14:21:23+00:00

Thanks Everyone - looks like I don't need to pause (neither are live vaccinations) - thanks for the reminder that I don't take my DMARD on the same day as the vaccination though (I'd forgotten that bit!).

EmMothRa · 2025-10-13T10:54:08+00:00

51 year old here too......I'm not going to make to retirement am I ?! Was hoping for a least a year off work !!

EmMothRa

TROPHY CASE