To ask how your rhumatoid arthritis affects you or someone you know

[BuffyTheBuffetSlayer]

I'm sorry, posting for traffic as the health boards can be really quiet.

I have just been told by the physio that he believes I have rhumatoid arthritis due to pain in several joints plus being young and x-rays showing knee arthritis, so he made a referral to rheumatology.

But I know very little about it other than the generic info through Google. So I was wondering what early symptoms people experienced and how has it impacted quality of life later on? Is there anything I can or should be doing? Has anyone been referred with similar symptoms and it turned out not to be rhumatoid arthritis? My head is still spinning at reading 'degenerative disease' and 'fused joints'!!

For those of you who failed methotrexate, what happened next?
DH is on 15mg and is still in pain.
OP, wishing you well. It's easier to deal with something when there is a name for it xx

I have had RA for 40 years. Sadly in the early years there were not the aggressive drugs that we have access to now. This has meant I have had to have extensive surgery to keep mobile.
Methotrexate did not work but luckily these days there are biologic drugs which are game changers. They are expensive and the NICE guidelines for their prescription can make it difficult to qualify. I inject a drug called Tocilizumab each week. It has worked for me for 12 years. It cannot repair the previous damage to joints but can prevent further damage.
Rheumatoid Arthritis does not only affect joints, it can affect the whole body. Heart, lungs and can be unrelenting. I have had anaemia for years and have needed blood transfusions and permanent iron tablets. Never make the mistake of thinking this disease can be controlled by "natural" means.

I have RA and was diagnosed in 2017. I started with pains in my hands and shoulders and was diagnosed with muscle strain.

What made me push for a better diagnosis was when I started to get a lot of pain in my feet (especially in the mornings) and when I couldn't even pull myself up an indoor climbing wall as I was in too much pain. I was 45 at the time and otherwise very fit.

Mine was found to be severe and to a point it still is. I am on methotrexate injections weekly (25mg and so easy to do) and have also been on a biologic called adalimumab, which hasn't worked, so I'm going on to baricitinib. Methotrexate has been good for me.

It's been a pretty hard road and sometimes is still very hard going, but if you go into it with a positive mind, it's not as bad as you think it will be.

Don't think you will become immobile and your life is over, it won't be. I still do martial arts and whilst I'm not as flexible and as quick as I was, I can still do it. I just take it easy.

I am very grateful to all who have shared how this affects you. My heart breaks for all of you going through this.

I have been in SO much pain for such a long time, going through incredible pain right now, I honestly believed my pain could be fixed. I asked to be re-referred to orthopedics to have the plantar fascia release surgery I put off year's ago. And I was meant to get another steroid injection in my knees which the physiotherapist decided won't help and I was hoping to get the aching, crushing pain in my legs investigated and hoped for them to find a cause which is easily fixed. And then I would be pain free!! But it's not going to happen now, none of it. Right now I can barely stand without bringing tears to my eyes!! And I have my 2 toddlers to run after!

I have its cousin, psoriatic arthritis and like some others here methotrexate has been a game changer. Sometimes I need steroids but not too often, I'm flaring currently, but I'm usually very well controlled and very fit and active. I generally feel so much better than I did pre diagnosis,

Do you have any skin issues? Like Psoriasis/silvery dry skin/terrible 'dandruff' that forms into lumps or scales on your scalp?

You're possibly describing tendon involvement which is more common with Psoriatic Arthritis, especially as that can commonly affect your back and hips.

Anyhow, rheumatology is the place to be seen and take the medication they prescribe. These days, they try to get it under control quickly to reduce the chance for further joint damage. I found methotrexate a bit crap even by injection, but once I'd tried it for a good period, I got approved for biologics. I'm on my second now and that has genuinely given me a life I can't remember ever having.

The awful stuff you read about or see photos of is generally historical or at least in part due to the information coming from countries where there is no free healthcare, so people are going undiagnosed or untreated due to the cost. Its a lot rarer here because you don't have to pay tens of thousands of pounds for medication and physiotherapy.

Other than that, trying to keep mobile really does help. Swimming, particularly, as it supports you, cools down inflamed joints, warms up cold and stiff ones, reduces impact and chances of injury and makes you feel good. And a good mattress and pillows are worth every penny to reduce pain at night and maximising the rest you do get.

Versus Arthritis is the main charity involved with research into arthritis. They have some excellent brochures and booklets online, they will also post them out to you for free. The NHS also gives them out so you can Trust their advice.

@BlossomOnTrees

For those of you who failed methotrexate, what happened next? DH is on 15mg and is still in pain. OP, wishing you well. It's easier to deal with something when there is a name for it xx

There are other medication they can try, if they fail they will then try a specialist biological treatment, however they are very expensive (mine cost nearly £600 an injection and I needed 2-3 a month) so require assessments and approval from the board for funding so if the RA isn’t active enough to score high enough it won’t be approved x

@NeverDropYourMoonCup I developed what I think is rosacea on my cheeks over a year ago. My skin on my hands and other places can also be very dry, sometimes flakey. My DM said I had psoriasis on my head when I was younger but never that I remember.

Last year was full of investigation into numbness around my face and limbs. Since typing tonight the tip of my index finger started to ache and feels numb! My toes on both feet started to ache earlier.

@BlossomOnTrees

For those of you who failed methotrexate, what happened next? DH is on 15mg and is still in pain. OP, wishing you well. It's easier to deal with something when there is a name for it xx

Does he take methotrexate alone? Combining with Hydroxychloroquine may help if not already doing so x

Sorry, I'm rubbish at explaining 'what hurts' or 'what does it feel like' so just saying what I notice tonight.

I said earlier that I didn't think it could be RA because I haven't experienced hot joints. BUT remember now after talking with DP that I often put my hands on his cheeks to ask him if my hands are hot because they feel on fire! Can't believe I forgot about this! Is that what it feels like? I also feel a burning sensation on the sole of my feet. Not my knees tho where I know through x-rays where there is definite arthritic damage.

My db has RA. Unfortunately he hasn't had the "good fortune" like some on this thread. He has just turned 41 but had RA at least since his early/mid 20's. He is now bed bound and every joint and muscle has been affected. He a shadow of his former self and it's heartbreaking to see. He is in constant agony and it seems like his joints and neck are fusing.
He can't wear shoes as his toes have turned outwards. He can't raise his arms to touch his face and his phone is too heavy to hold. He can't type as his fingers are deformed and the joints bend the wrong way. He can't open his mouth more than 1-2cms. He has muscle wastage and has gone from 22st to about 15st (probably less).
He is physically and mentally an absolute mess.

He has felt suicidal and I can't imagine him living this life for potentially the next 40/50 years.

He's currently on etanercept injections, methotrexate, prednisone, tramadol and paracetamol. He's been on these before and they still make no difference to pain relief.
He has also had morphine patches, sulfasalazine and quite a few other medications but I can't remember the names.

I was diagnosed as a child and struggled on and off for years. I had the Rheumatoid factor and also uveitis. At my worst I was going down the steps on my bum and on walking crutches, at best living normally but could never climb hills well or do sports. It was a few years on, a few years off with recurring pain when it rained etc even when in remission.

Then, I had to start a FODMAP diet for unrelated reasons in my mid 30s. Miraculously, it cleared up my arthritis almost entirely. I don’t know if it was the gluten or the lactose but something -probably gluten - had been the trigger. I’m in full remission now.

My mum was diagnosed around 12 years ago in her early seventies. She was put on a clinical trial for a new drug (forgotten the name) and it was basically a magical cure. All symptoms disappeared, and apart from having to take the drug and quarterly check ups it was as though she never had it. A couple of year ago she had to come off it temporarily in order to have an operation and it no longer worked when she started taking it again (a known possibility). But luckily there was yet another new drug available (again I don't know the names, but both now approved by NICE), which works as well as the first one. Before she was put on the original trial the NHS put her on methotrexate and steriods, which didn't work well at all and made her feel very ill from the side effects.

In order to get the initial referral to the trial she paid for a private consultation, but after that it's all be NHS funded (luckily as apparently the cost of the drugs is around £20,000 a year). Apparently both these drugs are only suitable for people who have been recently diagnosed, and any damage to the joints can't be reversed, so it's important to start on them quickly. I think it would be worth paying for a private consultation to start with.

@thebookworm1

I was diagnosed as a child and struggled on and off for years. I had the Rheumatoid factor and also uveitis. At my worst I was going down the steps on my bum and on walking crutches, at best living normally but could never climb hills well or do sports. It was a few years on, a few years off with recurring pain when it rained etc even when in remission.

Then, I had to start a FODMAP diet for unrelated reasons in my mid 30s. Miraculously, it cleared up my arthritis almost entirely. I don’t know if it was the gluten or the lactose but something -probably gluten - had been the trigger. I’m in full remission now.

I’m glad that worked for you but I don’t think you should be promoting it as some miracle cure - majority of people with true rheumatoid arthritis is not going to be put into remission simply from changing their diet and I think it’s irresponsible of you to suggest so.

@thebookworm1

I was diagnosed as a child and struggled on and off for years. I had the Rheumatoid factor and also uveitis. At my worst I was going down the steps on my bum and on walking crutches, at best living normally but could never climb hills well or do sports. It was a few years on, a few years off with recurring pain when it rained etc even when in remission.

Then, I had to start a FODMAP diet for unrelated reasons in my mid 30s. Miraculously, it cleared up my arthritis almost entirely. I don’t know if it was the gluten or the lactose but something -probably gluten - had been the trigger. I’m in full remission now.

Equally - food does not trigger rheumatoid arthritis - its caused by the immune system attacking healthy parts of the body.

@ANON3749 Well said.

[quote thecatneuterer]@ANON3749 Well said.[/quote]
Honestly I know people mean well but I don’t think they understand how upsetting these ‘miracle cures’ they’ve found can be.

The amount of times people have said to me “have you tried changing your diet?” “Have you tried these vitamins? I heard that someone took them and was cured within weeks!” and does it help me? Absolutely not, because they don’t work and all it does is remind me that my illness is not curable only ‘treatable’ and that it’s something I’m going to have to endure for the rest of my life.

Yes some things may help and improve symptoms for some people which is great, but to try and kid everyone into thinking it’ll put you into remission is irresponsible and disheartening because for most it won’t.

RA is a brutal disease and the treatments are usually equally as brutal for a reason x

[quote thecatneuterer]@ANON3749 Well said.[/quote]
I was also the same as your mother on methotrexate - gosh the stuff was awful, honestly thought it was going to be the end of me!

Do you happen to know the name of the other drug she had that worked really well?

Currently discussing new meds with my doctor! X

I warned in my first post that someone would be along telling the OP to follow some special diet.
No. There is nothing more infuriating than being told sagely that all your problems would go away if you atr tumeric, or cut out dairy, or bought snake oil.
If you get a diagnosis and all else fails then maybe, if you believe in it, it's worth a try. If there were any credible evidence for this my Rheumatologist would be telling me.

@ANON3749 I'll find out for you.

I was diagnosed with RA at 31, I'm now 42 and on 20mg methotrexate weekly. It's been hard at times, I also developed plantar fasciitis which I'm not sure was linked and the side effects of the methotrexate can be draining. I echo others here who say don't automatically jump to worst case scenario - there is a lot of treatment out there. Definitely listen to your rheumatologist though and ignore the people who tell you to just eat (whatever..)!!!

Was going to add, I also have a full time job and am pretty active within my limits. It's not necessarily the end of life as you know it...

@furrysocks

I was diagnosed with RA at 31, I'm now 42 and on 20mg methotrexate weekly. It's been hard at times, I also developed plantar fasciitis which I'm not sure was linked and the side effects of the methotrexate can be draining. I echo others here who say don't automatically jump to worst case scenario - there is a lot of treatment out there. Definitely listen to your rheumatologist though and ignore the people who tell you to just eat (whatever..)!!!

I echo ignoring all of the miracle cure stuff. Just nod and thank them and move on.

OP - the names of the two wonderful drugs my mum had (not at the same time) were TCZ and Baricitinib. Both completely stopped any symptoms of RA. It's worth asking about them.