Rheumatoid Arthritis help!

[Jujujudo]

I’m 51, not diagnosed because I’m still waiting for an appointment…
I need some advice regarding flare-ups. On normal days I struggle with painful fingers and toes but it’s all relatively manageable - but I have frequent flare-ups and I’m really struggling with how to deal with them, and knowing what’s normal for RA and what might be something else unrelated.
I feel like my joints are more painful and inflamed, including shoulders, hips and jaw, and I feel very weak and tired and overwhelmed generally, like flu but without the fever etc.
I’ve taken ibuprofen but it’s not doing much. I’ve also got an awful headache.
Its lasted over 3 days already and I really need some advice from someone who is suffering from RA - what can I do? Does it sound like a flare or something else? How long does it take to be diagnosed etc.
TIA for any replies.

Hi 👋

I was diagnosed about seven years ago. My diagnosis only took a few weeks. Called my GP and described symptoms, which at that point were very sore hands and feet. Had my bloods done then a referral to rheumatology took two weeks. RA is classed as a medical emergency.

In terms of flairs and stuff - your symptoms sound typical to me, but everyone with RA will experience it differently. Mine is well-controlled with meds. I'm on MTX and a biological. However, one of my wrists is now completely immobile and my hand doesn't function any more. I'm only 43 🙄

I have had RA for 20 years and on MTX only. What you are describing sounds like a flare, and fatigue can be a big sign. Your GP may be able to put you on a small dose of prednisone or a longer acting NSAID like naproxen. Ibuprofen won't cut it, I'm afraid.

I’ve had RA for 8 years. I’m on MTX and 6 monthly infusions. When I have a very bad flare I end up on oral Morphine, a not so bad one, naproxen and 30/500 codeine tablets takes the edge off.

Ibuprofen won’t touch the sides.

Thank you. I’ve been to the ER about three times in the past with extreme fatigue and very painful joints. They always did bloods and my CRP was always very high but they just said it’s some unspecified infection and given me IV antibiotics. I’ve been suffering with painful fingers since my late 30’s but what with little kids, work etc I just thought it was aching hands from pushing the buggy etc.
I have an appointment in 2 weeks with a specialist rheumatologist so I’ll make sure that they test me properly and give me something to help. Wishing you all the best!

What’s MTX?

Has it got worse over the years? How often do you have flares and are they related to stress or emotional distress etc?

Methotrexate

They did get worse over the years until I started my infusions. Stress will make them worse. I don’t have any emotional distress, but I would say it has an impact.

My Rheumatologist is brilliant and he has said that any form of stress will make RA worse.

It does sound like a flare up.i don't have to many now as I have anti TNF injections. If I do get a flare up I normally have a short course of steroid tablets and/or a steroid infusion. I agree that stress can make symptoms worse. Good luck with your appointment - I hope you get some answers 🤞

I have had RA probably since I was 15 and like you was fobbed of many times in the UK and never diagnosed or taken seriously. I was diagnosed aged 31 in Spain (where I have now lived for many years), the first time I went to the doctor when having a flare. I was given Prednisone and naproxen for about a month while they ran the necessary tests to check my suitability for a biologic, and then they gave me a biologic and other than the very occasional minor flare after having an infection that means I can't take the biological I have been in remission ever since, that is, practically no pain, no morning stiffness, leading a normal life. Had a third child etc etc.

When I went to the doctor in Spain they ran bloods and found my CRP levels to be sky high and rheumatoid factor of 147. I was unable to dress myself, could lift my arms above my head to tie back my hair, could not walk without a stick, thought I was going to have to sell my flat and move because I live in an apartment without a lift.

After taking the biologic I was fortunate enough to have a great result.

Now my CPR levels are in normal range and RA Factor about 11 (in normal range).

There is hope of living well with this disease.

I have never taken methotrexate or any of the old fashioned medicines and they were never suggested to me here in Spain.

Push very hard and don't allow them to fob you off. The NHS is a bit shit, you need to advocate for yourself. They can prescribe biologics but they usually want to try people on methotrexate first .
Look up the cost of methotrexate Vs the cost of biologics and you will see why.

Best of luck, it doesn't mean your life is ruined. I remember feeling how you are feeling.....and now I am (thank god) leading basically a normal life. I am 40.

Sorry, should say I *couldn't lift my arms above my head, not I could

Sorry to jump on your thread here but it popped up as I was scrolling

I'm lying in bed with two swollen knees - have had 3 steroid injections this year and fluid drained 4 times but they keep swelling back up to the point I'm on crutches

My GP refuses to believe it's RA so I've had to go privately and the consultant appt is in July

In your experience can it just affect one lot of joints? I thought I would have it everywhere by now as it's been on and off for years but only ever my knees

I have inflammation markers in my blood work but nobody has ever referred me