Rheumatoid arthritis help. Deperate

[Sofedup15]

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.

I've been there - I'm so sorry. It really sucks. Can you ring your consultant's secretary and explain the situation? They probably aren't in charge of the appointments for outpatients but might be able to get you bumped up. Going forward, I have had excellent results on Benepali (Etanercept) weekly injections. Ask about biologics when you get to see someone.

Thanks for this squashyhat. I have called the rheumatology help line my hospital has on Thurs Fri and today lol so hopefully someone will be in touch soon. I'm hoping even for pain relief in the meantime.
From what little understanding I have because I have 'failed' 2 drugs they will now look at biologics but not without me seeing the consultant first.
It's a vicious circle.

Sounds absolutely horrific I can’t offer much advice but I’m truly sorry this is happening to you.
My dad has the same condition and he takes methotrexate in pill form every day for the past 30 years. He does get diarrhoea occasionally but not frequently.
Maybe you can try a lower dose prescription from your GP?
I will ask him which prescription he has, obviously it may not suit you.
Perhaps you could also contact your MP and try and get a quicker appointment?

Thanks peachoctopus I appreciate it

If it helps I managed to reverse RA for 4 years with diet, only for Covid to retrigger.

My levels are down below the diagnostic criteria again now.

Keto, gluten free and very low dairy, hard going at times but I find when stable I can slacken off somewhat.

Very hard dealing dealing with a young child when so incapacitated so I really feel for you.

Thanks stayathomegardner I'm going to look up some diet info now thank you

Hello OP,

I also have RA. Am really sorry to hear things have been so rough for you.

I know you mentioned trying to avoid steroids, but sometimes they are needed to bring significant flares under control whilst a more long term plan is put into place. Have you been given a long acting steroid injection before? They might just buy you some relief whilst you wait for the consultant review and consider the biologics. I have been given kenalog as a bridging treatment whilst waiting for new meds to kick in, and it worked really well. I'd be recontacting the advice line.

Good luck and hope you get some relief soon.

I’m so sorry to hear this. Our timelines for diagnosis are very similar. I’m taking oral methotrexate but also experiencing gastric symptoms but no where near as bad as yours.

I was discussing this with a family member who has moved between medications and has settled on one of the injectable ones that has turned everything around for her so please don’t give up hope.

It is an awful condition.

This sounds absolutely awful. Contact PALS at your hospital. Tell them what you’ve said about being in agony, you can’t sleep, can’t drive, are incontinent, can’t look after your child. Tell them you will take any appointment, phone them every day asking about cancellations, We shouldn’t have to advocate for ourselves in this way for healthcare but at the moment, we do.

Thank you everyone who has replied to me, just even typing it all out has helped.
I will ask about a steroid injection thank you.
I do have hope it will finally get all sorted out.
Think I will keep on at the hospital and shout a little louder for myself.

Thank u all

I can’t believe that they’ve left you in this much pain! I’m so sorry that you’re having to go through this but second PP with trying to get a steroid injection sorted until you get the actual Rheumatology appointment.

I was given a course of Prednisolone when was first diagnosed with Psoriatic Arthritis as well as injections to target the most affected joints. Before this Naproxen helped a bit with the inflammation.

Hope you find some relief soon.

I have RA, diagnosed 10 years ago. Sorry to say it was trial and error for a while with meds, especially as they have to give them 6 months ish to assess effectiveness. I know how hard it is but to reassure you, I am so well now I wouldn't know I have it most days. I hope you get to that point. I would definitely consider steroids in the short term, just to get you moving. Can you GP prescribe naproxen instead of codeine?
I also found VS Arthritis very helpful for advice.

I asked my dad who has a similar problem and he only takes methotrexate once a month and he takes 6 tramadol tablets a day, I don’t know if you could try similar, glad you are getting some advice from others on here.

I've had RA for 20 years, and you sound like you're having a bad flare. See if you GP is willing to give you a very short course of naproxen. Diet-wise cut out all sugar and refined carbs. Rice and potato yes, bread/biscuits and cakes no. Limit fruit as well. The diet is the toughest bit.

Good luck and let us know how you get on.

I have RA first diagnosed 11 years ago.
I second what is said about steroids, they will give pain relief and calm things a little until you get treatment that works. Unfortunately in my area I think you have to fail three DMARDs before biologics so you may be offered hydroxychloroquine or leflunomide.
While I accept some people claim that various diets / supplements / exclusions have cured their arthritis I am a total sceptic. If I had a £1 for everyone who told me to go keto / GF / take turmeric etc I would be rich but I'd still have RA. I confess I have tried a few of these in desperation but I think you have to believe. All I'm saying is try diets by all means but don't get hopes up. If there truly was a miracle cure my rheumatologist would tell me.

Codeine is no good for RA other than it might help you get some sleep.
Naproxen can help but is brutal on the stomach, you might need PPIs to go with it.

Thank u nowiknowhowtomakehumans.
I will def ask about naproxen. I spoke to vs arthritis today I'm in Northern Ireland so some info didn't really apply to me but still good to be listened to.
Great to hear u feel so much better now and that there is hope thank u

Thank u. I have just done an one shoo for new foods so will def be giving this a go. Il try anything at atm

Thank u. Overall consensus is the steroids do work short term so think il be trying that again.
Thank u

Update for you all. I have got speaking to a nurse at the rheumatology department and they have put me in for an appointment end of February and have prescribed me some naproxen for pain relief in the meantime 🤞

Diet definitely effects me.
Things that worked for me;
cutting out potatoes - game changer.
cutting out tomatoes type products - acidic I think.
I still play around with my diet.
oh and get plenty of sleep and drink plenty of water.

Thank you for the tips

I found losing weight through weight loss injections helped my RA a lot, and they are also supposed to help with inflammation.. worth trying

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 u I am going to look into this once I get started in medication