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Autoimmune disease

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Original poster

Rheumatoid arthritis help. Deperate

28 replies

Sofedup15 · 12/01/2026 11:59

Il try to keep this short.
Had diagnosis in May 25 privately as NHS waiting list was 18months.
Had been suffering for around 18months prior to this.
Anti ccp level was 508.
Seen by NHS consultant in July 25 given methotrexate, had bad reaction and told to stop after 2weeks.
Started methotrexate injections end of Aug less than 24hrs later was in A&E with another awful reaction, injection stopped.
Was given sulfasalazine beginning of Oct. Again stopped after 2weeks due to severe stomach issues. The I actually had to wear my dad's incontinence pants to allow me to do the school run! It was that bad.
Rheumatology told me to have a break and see them after Christmas.
I have been in absolute agony but knew my appointment was coming so kept pushing through.
Appointment was on Friday past, they cancelled . Can't give me another appointment until at least April.

I'm devastated. I'm in agony I can't sleep I can't look after my young child. Some days I can't even drive.
Gp gave me codine which does nothing.
Scared of taking steroids again, not that they have been offered, because I can't cope with the lack of sleep and the increased appetite. I'm already so over weight.

Has anyone any advice on what I can do. I can't go on like this until April. I just can't, plus the fact the drugs take another 3months to work.
I'm at my wits end.

OP posts:

Original poster

Sofedup15 · 14/01/2026 11:50

sashh · 14/01/2026 05:11

I have psoriatic arthritis. I've had it for 33 years so I have had a lot of treatment.

I'm glad you have an appointment in the near future.

Things that can help. You need a stronger pain killer. Something a GP told me is that paracetamol alone is quite mild but strong when it is prescribed with other drugs eg codeine.

Naproxen is an anti-inflammatory, it worked really well for me but as I got older the GP stopped prescribing it as there are risks to taking it over a certain age.

As well as painkillers you need an autoinflammatory, your GP should be able to prescribe it.

Steroid injections in to particularly painful joints. I'm lucky my GP does them some people have to go to the hospital.

Heat / cold. This depend on how you feel, cold (ice packs) can reduce inflammation, heat can help with pain a hot water bottle or heated throw.

The drugs you have described are disease modifiers, I've had them both but also reacted so I am not on them at all now.

A TENS machine, in simple terms it confuses the nerves so the pain signal doesn't get to the brain. I was lent one by a physio, it worked so I bought my own.

Hot paraffin wax, this is great for hands, You probably need to see a physio to learn how to use it safely.

Hydrotherapy, preferably at a hydrotherapy pool with a physio but they will give you exercises to do at a local pool.

Physiotherapy.

Lastly a visit to an orthotist, they make various items made for you. For me it was some foam built up to put in my shoes and some 'resting splints' mine are for my hands, these are made to your size and in a position that is how your hands should be at rest. I use them for an hour in the evening.

Thank you so much very helpful info

OP posts:

LiteralNightmare · 25/02/2026 07:16

I hope you get on a biologic soon, it will stop any further damage being caused. And the pain of course. I'm totally pain free on a weekly Benepali injection (I do it at home) for about 10 years. One of my wrists doesn't move anymore, the bones fused together before I started treatment, but there's no pain whatsoever now. Methotrexate did nothing for me.

Thisbastardcomputer · 25/02/2026 07:40

I’m 15 years in with RA but l also have osteoarthritis as well, after the initial diagnosis which took a year, at first they thought I’d got fibromyalgia. It was reasonably under control for a long time but the last few years have been hell.

if a body transplant, from the waist down was available, that might help, it’s hips, knees, ankles, feet. If l drive for 45 minutes I can barely get out of the car.

im on methotrexate, sulfasazine, meloxicam, cocodamol, l had to beg for an appointment with the consultant, which l got in January and he will see me within 3 months, I’ve had bloods, x ray, scans, just hoping he comes up with something to alleviate this hell I’m going through.

I’m 70 this year but my life is like someone mid eighties would experience, l rarely go out, if a friend suggested a day out shopping, there’s no way l could go, I’m not fit and in too much pain for a holiday, l try to make the best of what I have but it gets me down.

Good luck with yours x

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