[Closed] Talk to me about...Rheumatoid Arthritis

My Dad has had RA for at least 15 years now - he is now 72.

He takes Methotrexate and has regular blood tests to ensure all well. There was a little experimentation to get appropriate dosage initially.

It has never slowed him down - still working, plus does plenty of manual graft at home and whilst helping at the local transport museum workshops. He did buy himself an ebike and is out on it often too.

Alcohol - he was never really a drinker (Xmas lunch generally...) but does enjoy the odd beer, glass of wine, etc.

Step 1: The no.1 place to get medical advice is from your doctor. Not an internet forum

Step 2: While you're here...

RA is a chronic inflammatory condition. Remove inflammation causes from your habitual life. You may well have had a youthful body covering up and accommodating a build-up in prevalance/vulnerability to chronic inflammation. Now that has come to an end. It has flared up. You should heed the warning signs and consider that all the *causes (plural)* are as yet unidentified. The doctors can medicate to resolve the symptoms but lifestyle choices will be up to you to experiment with and determine.

Look at the usual suspects which may include food sensitivities. Gluten, sugar, alcohol, caffeine, dairy. Get rid of canned drinks and fruit juices. Start reading ingredients lists looking for and avoiding the things in bold print that are still on your suspicious list. Prefer short ingredients lists in everything. Ditch processed food. Find a recipe book that concentrates on good food made from real ingredients that isn't too much to prepare and you like the tastes, textures, experiences. I'm now eating better than I ever have before. Healthier. Tastier.

My own experience with inflammatory disease is not the same as yours. Did turn out I was gluten intolerant and caffeine intolerant.Dairy seems to be causally linked to onset of prostate symptoms (for me). Alcohol is now something I enjoy rarely; previously the lurking sensitivity would make me hyper on one beer - fight or flight; I'd go with the hyper and instantly, obsessively reach for the next beer; absolutely easy to drink moderately now I'm not being put on edge by proteins that my body can't tolerate. Don't substitute in alternatives (but gluten-free beer is marvellous). Ditch anything suspect and move on. Be alert for the things you habitually consume causing mood/obsessive swings; if there's anything you can't stop eating at will and have to hoof the whole lot, the alarm bells should be ringing. For me the worst were coffee / bread / pizza / beer - easy to see the pattern in retrospect. I feel much better for the changes and can keep flare ups to an absolute minimum. YMMV.

I run. I have been running more now than ever before. I'd be looking to sustain some form of load-bearing exercise in preference to exclusively low impact sports like cycling and swimming.

I'm in my fifties and generally I'm feeling healthier than I have done for 20 years. I can get out of bed without rolling off the side onto my knees and gradually coaxing back and joints to let me stand up.

All I can add is like you I was struck with RA out of the blue, reasonably fit 52 year old and suddenly developed severe joint pains over a weekend (doctors are now sure it was some kind of massive over response by my immune system to something unknown)

joint pain was indescribable (at its worst it felt like knitting needles being hammered down the very centre of my bones...culminated in one weekend where I just sat on the sofa sobbing as could not walk or even lift a cup to my mouth !)

ended up having weeks of blood tests to try and find cause - finally markers for RA were found.

have ended up on cocktail of Methotrexate and Hydroxycholoroqinine which my RA consultant wanted to use as first line of treatment - have moved from tablet form of Methotrexate to self injecting.

be aware that some individuals can have reactions to Methotrexate (it can have some nasty side effects as its effectively a chemo drug - I had nausea, tinnitus,and some 'brain fog' as my main side effects..)

Key thing is get a meeting with the RA nurses/consultant and have an assessment of how bad the RA is, then they can work with you at trying to come up with an action plan and medication to get it under control.

Although I have some bad days, and still have a certain amount of pain in my hands/thumbs, I can function fairly well on a day-to-day basis - I certainly find keeping active on the bike does me good (both mentally and also the pain in my legs whist riding drowns out the pain in my hands so I can forget the RA for a while...)

if you want to discuss any more ping me a PM as I'm happy to help...

my Mrs has just been diagnosed with this during lock down. currently just restricted to her hands but she is concerned it will interfere with her mountain biking
cant help with the drugs questions but i think the trick is to do as much as you can as far as exercise is concerned to keep it at bay. without seeing you run its hard to say but you may be able to change your style which might improve things, cadence over 180 steps per min to avoid the heel striking for example which will put less strain on the joints. only run off road..
as its essentially an autoimmune condition the standard lifestyle changes should probably apply too

A few weeks ago I had what I thought was just a groin strain due to work now I'm convinced I've got polymyalgia rheumatica as it has spread to both legs and now arms
Just have to blank it out with ibuprofen to keep working as the tests keep getting done in case of something more serious

Not 100% related, but in 2017 (at the age of 36!) I had a bout of all-over reactive arthritis.

I'd been on a stag weekend and felt rather grotty on returning home on the Sunday, but by Monday I was literally struggling to get out of bed. All my joints were really painful and I was really freaked out!

By Wednesday, when I saw my GP, I'd already self-diagnosed reactive arthritis because it was so extensive and came on so quickly. It seems an E. coli had got into me somehow that weekend and caused a severe reaction, despite none of the usual symptoms you'd expect from a bug. I was told I was more likely to be prone to arthritis in the future.

Anyway, I found that generally moving my body helped hugely - not load-bearing, but things like moving around the house, short walks etc. The pain was by far the worst once I sat or lay down at night to sleep. Thankfully, within a week the pain had subsided and almost gone within a fortnight. I took only basic painkillers and a course of antibiotics.

Sadly, it wasn't the end of that nasty E. Coli for me. It's a long story, but it seems it may have eventually gone on to cause the pericarditis I had in 2018 and the subsequent 7 UTIs I had from 2018-19 (all sorts of fast-track investigations done, which thankfully ruled out cancer but couldn't explain the repeated E. coli presence). Fingers crossed, I'm now 8 months free of all symptoms.

Thanks guys, reading this has been very reassuring

@peaslaker - this is exactly the type of info I am after, the non medical side, absolutely will listen to the medical professionals for their advice and ill follow any instructions to the letter but I want to do what I can to help minimise the symptoms of the problem and then also the side effects of the medication. Generally speaking I love cooking, I don't drink many things with calories in them other than beer or wine, but I was hoping that really doubling down this focus on home cooked, healthy balance diet type eating would help so hearing that for you it has is really encouraging.

@ uncle Zaskar - I think my cause is the same, I was really ill with a cold that I just could not shake for the whole month of January, didn't run at all as I had no spare lung capacity or energy (covid maybe) and it seems to be since then that this has come on. I am booked in with the NHS Early Arthritis clinic next week so am going through those motions as you should do - you mention "brain fog", nausea etc, again I have read about these side effects, out of interest what day of the week do you dose yourself up? and how long do those effects last if you have suffered them, a day or so each week?

@ sailor74 - I feel it's a balancing act, I need to try and do enough that things don't seize or I guess longer term weaken like you say, but without overdoing it and leaving myself immobile for 2 weeks, I think that's the info I'm after, once I'm on meds etc what will I be able to do, I can make peace with the fact that maybe my marathon running days are over, but am I going to be ok to run the occasional 10k or 5k or whatever

The most important thing you said was Bupa. This will get you seen and re-seen in timescales that the NHS just can't match (in my area anyway). Get to know your specialist nurse, she/he will be more useful to you than the consultant for on-going treatment and questions. Not dissing the NHS, the team that have helped me have been excellent, to the extent both the nurse and consultant retired due to burn out!

For me methotrexate helped a little but became (after 2/3 years of tablets) unbearable due to the nausea. I'm talking a couple of days of constantly feeling like you're about to puke after each dose. They tried me on injections in case it was a tablet reaction (i.e. me!) but just as bad.

My salvation was Humira (that is a brand name I think). Cost a lot of cash at the time so there was a reluctance to let me have it but it has been transformational for me. One injection at home every two weeks and some other tablets daily. Rarely use the anti inflam tablets now.

Key to getting it was being honest in the quarterly review questionnaires that they ask you to complete (describing pain levels and mental well being). I was being too 'stiff upper lip' about it all so the data suggested I wasn't doing too badly. A conversation with the nurse on how to explain the pain and 6 months later the Humira was prescribed. It might be easier to get it now as the patent has expired.

I have AS btw

I don’t have RA but have psoriatic arthritis, which has several similarities. Was on mtx for a while - didn’t have any bad side effects for me, but didn’t find it very effective. I was bloody sore for a while, mainly hands and feet - really got me down. Was looking at biologic like humira or etanercept as the next step, but then a new small molecule drug called apremilast came out, and it’s been completely transformative for me over the last 4 years or so. Not sure if it’s approved for RA. They’ll want to try you on mtx and other conventional DMARDS, because they’re cheap as chips and can be effective for some. Mtx is a nasty drug for some and can cause liver and lung fibrosis amount other side effects. But for others it’s fine and effective. But if they don’t work, there are many more options out there, e.g. biological (mainly anti-TNF therapy), as well as some newer treatments. They’ll probably try you in a couple of conventional DMARDS before moving to something more pricey. I get a bit geeky about this as I’m a molecular biologist, so the science behind it all interests me. I actually did my undergrad thesis on RA.

Good luck. Don’t get too down as it is FAR more treatable and controllable than it was just 10-15 years ago.

Thanks guys, good to know that if after giving the Methotrexate a fair crack of the whip there are other options if it doesn't suit me.

Cheers

I was diagnosed with RA 7 years ago (I'm 53 now). I got to the point where I couldn't work or dress myself in the morning let alone ride my bike. There is some very good advice above which I can't improve on. All I would say is listen and trust your RA consultant. It took me about year on a bit of a roller coaster to get the right Meds sorted me. Now I'm working again (self employed plumber) and riding my bike at a half decent speed and distance, I managed a lap of Brighton Big Dog under 40 minutes last year which i was quite pleased with being an old timer with RA! Of course I have my off days but that is something I have got use to. Good luck with with it all 👍

There is a good charity called NRAS which supports RA sufferers. Easy to find on tinternet

I don't have RA (yet, I have a family history of multiple autoimmune disease and have had psoriasis since birth), but I have worked on the development of new treatments for RA for many years. In the past, more potent treatments were reserved until disease progressed. Then came the era of the biologics (anti-TNF#1, anti-IL6#2, anti-CD20#3...) and JAK inhibitors, and a more aggressive approach which is found to improve long-term outcome.

Methotrexate is a standard first line therapy, but don't be afraid to ask your rheumatologist about more aggressive earlier treatment. Cost is the likely driver for avoiding treatment escalation (NICE guidelines) to "methotrexate non-responders" as we call them. It's not a nice drug and can have liver issues for some.

RA is a very variable disease, which can in some instances be rapidly debilitating, but there are now many more therapeutic options than when I started research in the field (2000), and more are coming. To such an extent that finding "better" drugs is really challenging. One last fact, RA does not reduce overall life expectancy appreciably, but does have increased morbidity.

#1 adalimumab (Humira), infliximab (Remicade), golimumab (Simponi), certolizumab (Cimzia)- they all work the same
#2 tocilizumab (RoActemra), sarilumab (Kevzara)
#3 rituximab (Rituxan)

TiRed,that's informative post, cheers👍

My pleasure.

When you google RA and look at the awful images of twisted hands (Renoir being one of the most well-known btw), those extremes are now much rarer due to modern therapy (my mother had RA and AS).

RA is measured using two clinical scores that are basically the same - 28-joint Disease Activity Score (DAS28) which is the sum of swollen and tender joint count plus an addition for inflammatory blood markers (C reactive protein, CSR, or erythrocyte sedimentation rate, ESR) plus a score of how well your doctor thinks you are doing is favoured in the EU. The other US American College of Rheumatology measure is ACR20, 50 and 70%, which is proportion of patients with 20, 50 and 70% reduction in the same clinical measures - including CRP and ESR. We used to be happy looking at high ACR20 responses, say 50% of patients responding with 20% reductions, but the goalposts have now moved onto ACR50's and even ACR70's - which is basically disease remission!

You can estimate your DAS28 just by counting the 28 swollen and tender joints and seeing how you feel. https://www.nras.org.uk/the-das28-score

source website from the Dutch group who developed DAS28 is here

Have you discussed Sulfasalazine, a similar but different DMARD to methotrexate? It was put to me that they were quite similar in my case ...but one of the two didn’t require giving up booze. No reason. Worked really well for me and my consultant is great. Don’t like being a disabled but I can run pretty hard and climbing not too far off where I was 20 years ago. A lot of it is about lifestyle and stress and spotting the signs. Good luck, get help. It may not be as grim as your worst fears.

Sulfasalazine really did nothing for me, except turn my pee very orange! It was a lot of tablets too, almost like a pharmaceutical meal. It’s a lot safer than mtx, so good to try, but think you’re pretty lucky if it’s effective for you. I’ll second googling RA images is a bad idea.