Having a Flare up

Jackn

Hi All. I feel I’m having a flare up, life is a struggle, contacted my Rheumatology Hub at the Hospital on the 19th and again on the 28th, they said it could take up to 4 weeks for one of the Nurses to get back to me.

I’ve tried to get a doctors appointment, but all they say, is it urgent?! Yes, I’m in pain and I have a debilitating energy levels, but I don’t think it’s an urgent case, or an I wrong. So, I’ll have to wait weeks for a routine appointment.

I struggle to get to sleep at night, then struggle to get up, because I’m painful and exhausted. Any advice is most grateful. Or if anyone else in the same boat, I’d love to talk to you.

frogmorton

Hi @Jackn

That's pretty awful not being able to get any help for weeks!!!!

Your rheumatology helpline isn't up to much is it? gosh I am sorry. Personally I would do one of two things either get an 'emergency' apt at the Drs and CRY if you want to let them know how bad it is.

There are things they can do to at least help you sleep while you wait to hear from a rheumatology nurse.

Or I'd maybe ring 111 for advice.

You are important. This is urgent. REAL urgent conditions, like strokes and heart attacks, should be going to A&E not the GP anyway.

Very best of luck and do let us know how you get on

Toni x

Trish9556

Hi

If you're in pain it is urgent. Ring the surgery and get an appointment with a doctor you get on with. We are not the people that say they're in agony because a fly landed on them (you know the type), we are the people who deserve better treatment from our doctors surgeries .

Don't take no for no answer.

I hope you get some respite soon

Love n hugs

Trish xx

stickywicket

I've been on methotrexate for over 20 years and only rung my helpline twice. In my view it's always urgent and I don't see the point of one that only functions so lengthily.

Equally, I'm not sure what your GP can do other than give exercises you can find on here or, if you're lucky, expedite an appt. with rheumatology.

I'm with @frogmorton (as usual!) I'd ring 111.

Your GP or pharmacist could prescribe / suggest pain relief but that doesn't tackle the source. Meanwhile the RA is doing damaGe.

Final thought - your GP could do another blood test if you get yours there. That way the rheumatologist has more info to go on.

Arthuritis

@Jackn @stickywicket @frogmorton As everyone above says, if you are in pain, it’s urgent. They can’t see the pain on your face with a phone call and have compassion exhaustion as they hear the same thing so many times a day, so you’ll need to insist.

The gp should get you an urgent appointment and the hospital can prescribe steroids to manage a flare up to tide you over until the MTX has sufficiently suppressed your immune system. Steroids are not a good thing long term, but in private practice long lasting 3month steroid injections are routinely available and popular as the flare pain decreases or stops dramatically within hours. This is generally in the 1st few months of diagnosis before the MTX kicks in.

NHS offers prednisolone tabs, which are also a short term solution. I had them and they do work, but can cause other damage if taken for too long, which is why you need to discuss the pros and cons with your rheumy.

Cath100

Hi @Jackn and welcome to the online community if you haven't already received a welcome 🤗,

So sorry to hear about your current situation, if you feel that you need to talk to a GP more urgently then perhaps taking an urgent appointment could be an option, they can or are meant to in theory be able to contact the rheumatologist on your behalf in some cases and it may be that they could review your medications also. You are important and it sounds like you are struggling. Or as already suggested NHS 111 may be able to advise.

In the meantime do keep chatting to people on the online community, the National Rheumatoid Arthritis Society also have some information on their website and a helpline and a facility where you may be able to speak to someone else with Rheumatoid Arthritis over the phone.

Application of heat or ice covered can sometimes take the edge off and gentle exercises when you feel able to will also help a little.

You can find out more here Managing your pain | Treatments and self-help (versusarthritis.org)

and also here

https://nras.org.uk/

A mentioned above also it may be that the GP/rheumatologist/rheumatologist nurse could be able to prescribe a short term course of steroid tablets which can sometimes help or look at changing or altering the medication you are currently on. If you need to chat too you can always call the helpline on 0800 5200 5200 to talk further.

Thanks

Cath100

(Moderator)

Baloo

@Jackn I was taught early on to see my arthritis as a timeline. I was hospitalised by my first attack, tested, and then discharged to the rheumatology as an outpatients.

I relied on their expert opinion to answer my question whats next, and that is exactly what I think you should do.

I try to carry on a normal life. I go to work, I come home, I nurse my aches and pains. I go back to the medics when I need their guidance on how to carry on.