Rheumatoid arthritis

[Nocturne123]

If anyone has any experience of this it'd be great to hear .

I started having stiff joints a few years ago when I was 22 ( now 28) initially the rheumatologist thought it was psoriatic arthritis but now thinks it may be rheumatoid.

I'll be starting methotrexate in the next couple of weeks .

Does anyone have Any tips on how to get through the next couple of weeks ?

I've had an intramuscular steroid injection and have cocodamol / anti inflammatories but they're not cutting it at the moment .

Dh had to dress me this morning the pain is just so bad at the moment. Dd ( 19 mo) and ds ( 4mo) show no mercy!

Any weird and wonderful tips on dealing with pain would be great and if anyone has experience of methotrexate please share because I'm terrified of starting a "proper" drug .

Sorry a bit long but thanks in advance

Hi Nocturne
God - sorry - am completely new to this, mid way through typing you a message, I pressed return by mistake.
I do have RA & was diagnosed 8 yrs ago. MTX did help me in those first few months. In terms of pain relief, warm baths (or showers if problems with mobility), layer up (clothes wise) to keep warm & rest when your body tells you to. I also found (& your consultant will probably say it's not such a good idea), the odd glass of wine helped - but obviously not too much

Hello Nocturne, I don't have RA myself, but my sister's quality of life improved soooo much with methotrexate, she is practically a new woman.

For the time being just try to take it easy and accept help. And I know, that's much easier said than done and not very helpful.

Thanks for replies

Growing - you said in first few months it helped , did it stop working?

I'm driving myself crazy about it which is stupid because obviously everyone reacts and tolerates things differently .

The steroid injection seems to have kicked in and it's great . I'm just hoping to get back to some normality when on drugs as I used to play a lot of sport and be very active .

I know I probably won't be able to do these things to the same extent just hoping .

That's great that it's helped your sister . I just try and think things could be a lot worse but dear god does it hurt sometimes

You're right pippi I do need to accept help . I hate the thought of burdening others with this but I've just had to cave this time .

Dh said he likes taking off my clothes not putting them on

Thanks korma . I have read that some people can't tolerate it but at least there are other options .

My df is a doctor so I like to torture him a lot about it and although it's great, it's not quite the same as talking to people actually dealing with it.

It's nice to speak to people who understand

Hi Nocturne
My experience pretty much echo's korma's; I have tried it 3 times but it just doesn't work for me - though I do know people who have great success on it. I would suggest that if you do suffer side effects, that you ask your consultant for injectable mtx as opposed to tablets; apparently it's more tolerable. Wishing you all the best - I do appreciate how hard it is to deal with a diagnosis

Thanks growing , I'll keep that in mind about the injections too . It really has been tough but I'm looking forward to the possibility of less pain .

I want to go surfing again . Or at least be able to run faster than my toddler

Hello nocture, I have RA since the age of 4, 30 years now!
MTX is good, it is the start off drug these days, you may not always be on it. Biologics are a wonder drug for people when you consider what we were on 30 years ago, advances are fab.

Bear in mind that all arthritis meds should be supplemented with a varied diet, good exercise that suits you, plenty of rest and plenty of oppertunities to look after your mental health and well being by doing nice things for you. I say that as a self management leader and I know that these things are not always easy but it will get better.

Also note that DR GOOGLE is not your friend!

Swim, walk, move.

Aloe Vera, copper bracelets etc DO NOT WORK. Please do not listen to people who peddle that crap.

Surfing is one of the really good exercises you can do with RA. You may need to modify your activities but technically there is nothing you cant do.

Know that auto immune arthritis such as RA comes in flares or cycles. You can feel really good one day and over do things and push yourself into a flare. Try to monitor your flares and see what triggers them.. is it housework? Stress? Lack of sleep? Make changes to improve.

If you have any questions, just ask. I have a mine of info and will be happy to help

Thanks takemeup that's really helpful
I think my flares mostly come from stress.

I'm a naturally very anxious person and do get stressed very easily . Christmas visiting in laws completely stressed me out ( all nice people just hate obligatory visiting )

I then had an awful flare. 30 years of RA must have been so tough ??.

That oughta do it alright!

Do you know it has been tough, but manageable. Im on my second pregnancy now (which took a while cos I was in a flare)

The young years are a distant memory and I pretended I didnt have it when I was a teen.

But the worst flare was after my first child. 3.5 years it took me to get back into the hospital system here in Ireland. I was lost and depressed, I knew nothing of my arthritis and knew no one beside the very elderly with it.

But when the meds were prescribe, I took a self management course (and I bet they have them where you are) and though the info was helpful and basic, it was the people who changed things for me. I met people like me! They knew what I was going through, some had hints and tips about getting through.

I still have lasting friendships through the group and for many years, I ran the course myself and I tell everyone, YOU control your arthritis, not the there way round. People who don't have it, don't understand it. Meet other people, learn your condition and keep going and you will be grand.

Also bear it mind some days will be shit. And thats ok too!

I have friend with RA. She was in terrible pain when she was diagnosed initially and had to take 2 month off work. Now she continues to work in her demanding job and travel and socialise. She is on regular gold injections, works from home a couple of days a week, swims and works with a personal trainer doing yoga and low impact exercise. She is careful not to get overtired, or allow recovery time if necessary. She manages her condition and it has been a real learning experience for her on how to look after herself to avoid and reduce flares. She is awesome, but it hasn't been a simple journey.

I'm NI and never heard about self management courses but then again I haven't been looking , bet they do have them here.

Pregnancy was so great for me , tiny 9month pain killers , I shall be forever grateful to my Dcs but like you I did have awful flares after both.

I thought it was time to stop burying my head in the sand . It was only when the consultant said i was in a bad state I really believed it .

I think I had convinced myself I was grand and I could live with it like that.

Your journey sounds so hard but you still have positivity which is an inspiration .

I'm mostly positive and get on with things as best I can but like you said some days are shit and I get angry at my body and cry .At least I do have a lovely dh who has been great at helping even if he doesn't understand.

Mrs cakes you sound like a great friend .

My friends, although sympathetic wouldn't know the ins and outs of things at all . Probably more my fault than theirs though, I've mastered the art of "I'm fiinnnneee"

I was diagnosed with RA inflammatory arthritis 2 years ago. I've worked my way up the medication ladder and saw the consultant today who is starting me on Humira (biologics) in a month or so. I just have to wait for the specialist nurse appointment.

I'm on injectable mtx and maximum triple therapy and I'm still very up and down. I'm struggling especially with my wrists, ankles and shoulder and also have pain in my neck, back and fingers as well as toes and knees. Analgesia is difficult because I have an adverse reaction to codeine, and am on maximum Naproxen and paracetamol. I feel like an old woman! Being a single parent to 3 girls (one of whom has SN and disabilities) and working doesn't help. I only work 20 hours a week but it's a physical job and I'm always tired. Because there's nothing to "see" I don't think people understand how tired and achey I am. Some days I'll get the girls to school then just want to go home to bed but that's not an option.

I'm moving in with my partner in July and stopping work which I think will help - I'll have more time for me and hopefully can integrate a more sensible activity plan and eat better!

Hope the MTX helps you and you feel better soon.

Oh sidge not sure what I'd do without codeine .

As for being a single parent , hats off to you .

Hope things get much easier for you when you move in with your partner

Hi op, I've got psoriatic arthritis and was on 20 mg methotrexate for about 1 yr. I started on the tablets then moved onto injections as the side effects were quite hard for me (but everyone's different so please don't worry).
I also had steroid injections regularly as the inflammation was damaging my joints fairly quickly. I'd also tried sulfasalazine but came off that within 3 days as I ended up poorly with it.
I'm currently on Humira which is a biological drug and it is a wonder drug. I feel normal! Tho I still get quite fatigued....but with two small children I'm not sure if it's the disease or them ha!
I'd say for pain relief, keep up with your inflammatries (I'm on etodolac and they help loads. I do notice if I forget to take it). Hot baths help me and try to do little bits at a time. Don't try to do everything if you're feeling a bit better cos it comes back to kick you up the bum later!
Try the drugs and if the side effects are too much go back. I changed consultants cos my first (old fashioned) consultant expected me to just put up with the side effects and ignored me when I said it wasn't working. New consultant listened to me, carried out ultrasounds and my thumb and other joints have damage to them off a few months of inflammation. Think he was genuinely angry on my behalf. He put me straight on humira and I haven't looked back! I can now go to my exercise classes and do nearly everything I used to be able to do.
The best advice I can give you is don't put up with something you're not happy with. Fight your corner cos no one else will.
Hope you get sorted asap

Thank you so good to know there are options if things don't work out with methotrexate .

I'm glad you've found a drug that works for you and thanks for the advice

OP, sorry to butt in, I hope you won't mind. I have another chronic pain condition so hugely sympathise. I am starting BuTrans patches as pp suggested and the early signs are hopeful for steady pain control to replace the codeine.

The reason I'm posting is to ask if you have considered applying for PIP ( personal independence payment), previously DLA, which is to help with the additional costs of long term conditions / disability. It's a lengthy and horrid form but the money is extremely useful and can be spent on anything you like ie cleaner, ready food, easier clothes, taxis. Also consider applying for a Blue Badge for easy parking which is so handy when trying to park and not using all your strength just getting into the shops or whatever.

You might well feel you would be a fraud for applying due to your age and not really 'disabled' but I assure you that if you pass the application then you do qualify. Disability comes in many forms. Good luck with all your treatment.

Aww, she isn't a great sharer, but I also have an immune disorder so we tend to share notes. But MN can be good for letting off steam too .

Hi Nocturne, I'm in the worst flare of my life too, my DD is 8 months and it all kicked off four months ago. I've been bf'ing, so managing with oral and injectable steroids. I'm going to start on Methotrexate in February.

I was diagnosed after my first pregnancy, spent the two years in between with no symptoms on sulfasalazine and hydroxycloriquine. Stopped all meds whist preg, lovely remission but it's been hell. I'm currently on a maintenance dose of predisonole, which is keeping the worst of it at bay.

I don't have loads of advice because this level of hell is new to me, but heat packs (the wheat filled ones) help me with aches and stiffness, but for the really dreadful bone splintery pains I find alternating ice and heat packs takes the point off.

I guess learning to manage is something I'm hoping not to have to do, I'm hoping the drugs will just take it nicely away again .

Thanks everyone ! Yes Sarah I find ice and heat helpful too .

Does anyone sleep on a particular mattress ? I slept on top of my duvet last night and either it was coincidence and my flare has settled or it did help a bit .

If only everyday could be like this

Hi Nocturne and everyone,
I've just been diagnosed with RA too (high rheumatoid factor showed up in blood tests). Been really struggling the last six months or more with feet and more recently hands too. Waiting for a rheumy appointment now.
I've got three older daughters, 12, 15, and 19, and a 3 year old.
I'm also on naproxin and cocodamol etc for the pain.
Sigh!

Hi the graub ! Yeh it just sucks but there are definitely some positive stories from past posters about medication they're on .

It's hard with kids too , I'm sure your 3 year old shows no mercy , my two are far too young to understand.

I'm actually going to the rheumatologist tomorrow to find out about my blood test / neck x ray and talk about medication . I am a tad nervous but it's definitely for the greater good !

Good luck , hope we both get sorted out with medication that suits us .