I was recently diagnosed with RA in Feb and since then playing the gauntlet with different meds to sort things out. I didn't do myself any favours as symptoms 1st began in the Aug and didn't see GP until Jan so swelling etc by this point was quite bad but I was so busy and kept thinking it would go away.
My question is, really, after another consultation today, the bloods are looking good and are down from 35 to 3, but the pain and swelling have begun to return. My consultant has said to up methotrexate and have another steroid injection, then back in 6 weeks and may be changed to injection. The plan is to have it under control within 6 months.
I know everyone is different, but I'm wondering if it's realistic to hope to be back to normal ? Will they be a point where it is under control and the pain/swelling will stop ?
I don't personally know anyone with RA so this is proving to be a very step learning curve.
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Crumble324
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Yes remission is the aim but it can take time, some sadly don’t achieve that, but RA has many medications and it’s finding the one that suits you. Sadly all take time to work and as we are all used to antibiotics which work quickly it can be a shock to find that RA meds take 12/14 weeks in some cases. So don’t feel despondent it is early days and if MTX isn’t the med that works for you then the next one might and the next one after that. Do read up on RA meds on the NRAS website and you’ll soon see how it’s a journey but there is good reason to be optimistic. MTX didn’t work for me but LEF was brilliant for years.
I'm hoping 🙏 I have only just turned 36 and have 4 children to keep up with so I'm praying for enough normality to keep up with them.
I was surprised when she said bloods were good, as was thinking it wouldn't be as the pains back although granted not as bad so was starting to wonder if this is going to be the new normal or whether hoping to be rid of the pain/swelling was realistic
I have a bit of a blip at the moment, but it’s because of changing medication. I’ve had RA for years and my hands and other joints are normal just at the moment a bit sore. So stay optimistic and see what happens. As the thing I’ve learnt with RA is patience. X
Thankyou for your story it does give me some hope.
I think I'm going to need to learn to have some patience, I know I'm the worst patient ever I hate being ill, im very independent and I'm really to busy to not be at 100% just wished my body understood that 🙃. x
As are the huge majority of people. But I don’t think of myself as ill; I just have a condition that can be treated and I take the meds and inject then forget. I’ve walked up Snowden, worked normally and retired to ramble, swim, dance and travel. All of which I do and did without any issues only CKD has impacted that recently. And I worked full time with a family, life really doesn’t stop just changes a bit so don’t think this is it, because it isn’t. Stay positive and take each day as it comes.
four kids! And you are so young! LOL. I had my first at age 36. ha ha. I do not think that this will be your new normal. For me the onset was the worst and it only got better.❤️
Hi Crumble. I was diagnosed in March. I'm on sulfasalazine and hydroxychloroquine. My joints are gradually easing apart from wrists and a couple of fingers!
I am so pleased you asked that question because I too have been wondering if 'normality' is possible. Also wondering how being 'careful' re infections is too careful.
I'm sorry to hear you're going through it too, but it's nice to have someone in the same place.
There's so much to understand, and I think different Dr's give different approaches, which is why i thought some advice and opinions from others living with it might help make sense of it all.
Initially the consultant put me on hydroxychloroquine with a view to add mtx but I had a reaction to it before starting mtx so was anticipating her maybe adding something else but for now she has increased the dose so hoping it gets rid of the issues in my hands especially. X
I know it’s hard to quantify like how long is a piece of string but in my opinion it’s just the usual, hands , face, space stuff. I have a little cute granddaughter and love a kiss and cuddle from her. So far so good but really all you can be a careful, despite masks etc and at the time 5 vaccines I got Covid and no idea where from. So my best advice is just do your best and don’t obsess about things as frankly that could cause more stress than the risk of a cold and really is it possible to eliminate all risk especially if you have children and as my GP said grandchildren who are germ factories. Lol
most people on here are struggling. It’s the go to for many of us sometimes just to rant. Those that are doing well are just getting on with their lives. I’m not one of those unfortunately. I did find one drug that really helped but after the first vaccine it stopped working.I still have my vaccines even though it cause flares. I am determined to find the one and Will keep trying even after 6 years of treatment. I had symptoms in my 30s but my Gp dismissed me as my bloods were good now know I have s-negative RA which doesn’t show in bloods and I was diagnosed due to symptoms. Hang on in there . You know where we are if you need support etc
Thanks J1707. I have been reading things here for a while before my post and felt it was a good place to get honest opinions.
Think I'm really looking to hear how other people have been and what I should realistically expect. I have got the impression it's definitely about finding which drug suits you best and am hopeful normal will return.
I think take the word normal out and accept you have RA and it’s weirdness and see what after a year the drugs do or don’t do for you.
I am not being pessimistic just if you keep hoping for normal And it does not appear you might then have to adjust your headspace and feel upset. It’s a slow process for drugs and meds for some and I would say swelling and pain is part of the course. I take oral Steroids as prefer this, as I can up and down when I need it based on my body and of course with GP knowing I know what to do.
Also if something does not feel right don’t put off asking for professional help. We all get days worse than others but if extended periods of time make sure you check in with you RA team don’t suffer in silence.
I started with symptoms quickly and severely 16 months ago. It took a long time to get into the system due to very long wait times although the GP and when I got there, rheumy have been fantastic. I have had oral courses of steroids (injections didn't work for me) every so often that get me on top of things for a while but in the meantime, since Oct last year, I have been trying different DMARDs. My CRP level went right down on oral steroids, then crept up a bit and after a second course it's down again and stayed down. This surprises me as I'd say I'm about 60% back to normal and I know for me it's going to take a bit more tinkering with the meds and perhaps biologics but I do remain optimistic that I'll get closer to normal. In the meantime, learning how to manage my illness (making sure I rest enough) has helped.
I do find that rest is key, since this began I have found I need more sleep and I am sleeping heavier but the times where I'm late to bed I do feel worse for the next few days. There's is so much about RA to learn, to be honest I never realised what it really was before my diagnosis and just thought it was a type or arthritis nievely old people get how wrong could I be.
But it's good to hear from others who are in the same boat x
Hi Crumble I have been on Methotrexate for many years now and had biologic added about 4 years ago when inflammation levels were high.I would say my life is normal I have the occasional tired day but not sure if that is due to RA. Have about 6-7 hours sleep a night.Very occasionally have a mini flare in my wrist which lasts 2-3 days and the most annoying thing is that my fingers swell if I over use tools in the garden like secateurs or shears but that is a minor hindrance compared with other peoples problems. I just wanted to say having RA is not all negative and once you are on the drug that’s right for you your life too could be ‘normal’
I have had RA since 1987. Quite a few medications which worked and then stopped working over time. Latest medications are great. But listen to your body, if you are tired then rest. Avoid stress. MTX worked for many years for me but took 12 weeks to kick in..Newer drugs like anti TNF and Jak medications are the next line..I live life normally now...Good luck..
your story has started very similar to mine. It took the best part of year and and several upping of MTX.
After 7-8 months whilst still by no means pain free when compared to when I first went to the GP I was so much better. But I wasn’t back to where I was before it all started. Always some pain some where and I likened it to whack mole, it would be quite sore one day, ease off them pop up somewhere else. Sometimes needing pain meds sometimes not. I thought of it like a deflated ballon, you squeeze it and certain bits swell that’s how I was until I started injections at 9 months in and then hydroxy was added 3 weeks later when I had my f2f review with consultant. He did say given where I had started all my markers were very high, he does expect me end up on biologics and advised that he would have started my in both hydroxy and MTX at the beginning.
Eventually once the MTX injections and hydroxy and 12 months on from first starting MTX I am worlds away from where I started. I can walk my 2 large dogs together for several miles, I can do the gardening without paying for it later. I am still sore in the mornings and several of my joints fingers:wrists/ankles feel “bloated” or “full of water” similar to when your hands swell when flying when I first get up but resolve pretty quickly. I do still have pain though n some joints daily but more of a dull ache as opposed to a throbbing or intense pain before the meds or when flaring.
My hips can ache when I first walk after sitting at a desk for a while but again resolves quite quickly. My Sub talar joint (that I didn’t know existed remains a persistent offender but I feel I am in touching distance of remission. Whist I have several tender joints none are swollen which is when the damage happens.
Life is good and I am pretty much able to do everything I could do before without having to ignore or medicate the pain.
Hope this helps. Everyone is different but drs have lots of options to find what works best for you so keep going it will be worth it.
I got so bad very quickly after diagnosis that could barely move and started to think in terms of a wheelchair. However, it’s now under control to the extent that I have periods when I forget I’ve got it and it hardly affects me. Still trying to find perfect medication regime but it’s a world away from where I was.
Thanks all for your replies its really given me some hope, I am definitely better than I first was. The swelling at the beginning was off the scale so I am seeing some improvement and reading your replies has given me some hope there's still room to get even better still 😊 .x
Sometimes it can burn itself out in six months! Unfortunately for me it did not. Don’t see meds as a weakness but a strength in fighting back! You are an RA Warrior now.
I was diagnosed during the Covid lockdowns, which certainly brought its own set of frustrations! I tried sulphasalazine and methotrexate, but my liver didn't like either of them.
After over a year on steroids only while I tried those (and waited what felt like an eternity for my consultant to do anything), I was put on a biologic, Benepali, and I never looked back.
I knew from the morning after my first dose that it was going to help. I just had to pray that my liver was ok with this one, which it is. I understand overnight is an extraordinarily quick response to new meds so don't bank on that, but I was almost back to normal after a couple of weeks. I had some lingering (mild) stiffness in my fingers that I assumed was here to stay, but after a year or so on Benepali, that too disappeared.
I think there's every reason to feel confident about the future. New drugs are being developed all the time, so if one doesn't work for you, try another.
Honestly, I feel like my old self on Benepali. The only thing that reminds me I'm not is that I get tired sooner in the evenings. But that's given me an incentive to look after myself better and I've developed a newfound love of my duvet!
Hi Crumble I was 42 when I was diagnosed with RA and am now 72 and treatment is now so much better. Mine was difficult to treat as my liver function test results were high so couldn't methotrexate so managed for years on steroid injections and different drugs like Sulphasalazine. 9 years ago I started on biologic injections and they have revolutionised my life, I have no pain apart from the damage done previously, I also take steroids orally 5mgs per day which is not ideal but hey ho I can live my life as I want. I'm sure you will find sth eventually that helps you and by the way my biologic injections worked very quickly. Best of luck with everything.
I was diagnosed in October. Put on methotrexate beg of January. No improvement so sulfasalazine added in 5 weeks ago. Also on steroids, although slowly reducing dose. My inflammation levels are still high so can’t wait for something to kick in, but still early days! Hope we both find some relief soon! 🤞🤞🤞
Thats where I am confused as at my appointment yesterday she said inflammation levels have come down which is good but yet I'm still getting pain, stiffness and some swelling in certain joints. Think after reading the replies is definitely a step in the right direction but maybe will need a different/another med to completely get it under control 🤔 it's just nice to speak to people who understand. My friends/family have been fab but just as I did they don't understand its a moving problem. X
Hi. I have had RA for 21 years and I am in remission. I still have to take medication because it is only the meds that are keeping me in remission. I do still get flares but they are short lived and I can deal with them. I hope you get to remission quickly so you can continue to enjoy your young family. All the best.
Well. I have had it for 21 years so I don't know what normal would have been and I am 72. On saying that I can walk further than I have ever done. I think the only thing I can't do is unscrew tight jars and I can't do any activity for very long i.e. gardening, hoovering etc but I can play with my 9 year old granddaughter and I have a great life ....except when I am in a flare. Try not to worry so much. I know you will read horror stories on here and some people do go through a very rough time, I have myself but there is light at the end of the tunnel and once you get on the right medication you will feel more positive about the future. All the best.
Sounds like your consultant is on the ball regarding your treatment. Do you have specialist nurse in the team? They're great to discuss things like pain swollen joints etc and helping to reduce your symptoms.
Like you there was a delay starting my treatment (my fault) but once it got in my system and things settled I'm in remission, still take my meds of course , no stopping those, First year is a bit of a roller coaster as your body gets used to the meds.
Hi I was told the same, maybe six months to get it under control or it might even go on its own. I didn’t see a doc either for several months, kept thinking it was an allergy. I was given steroids to start with, several courses of 20 reducing. Told by docs to go on methotrexolate but friends had had a horrible time on it and I refused as my liver hormones had gone mad after antibiotics for Lyme disease. (It wasn’t) changed my diet, kept on with steroids and had injections in hands and fluid taken off knees. then after eight months decided to go on hydroxychloroquine as I was fed up with it. It’s the entrance drug and least damaging. And you can drink with it! It worked a treat in literally the three months it normally takes. I kept on with steroids reducing over a year, very slowly. and now just on 200 hydroxy. I think don’t panic, go slowly, read as much as possible, don’t take everything they try to give you if it seems too much. They can go over the top and methotrexate is the cheapest so they try and get you on it!! For whatever reason they don’t like giving out steroids but for me they were a lifesaver. I did see a private doc in tandem a couple of times and he was really helpful, drugs from nhs but a second opinion was excellent. Good luck, it is such a shock when it starts…. bit will get better. Do have a think about diet as I found that really helped. Ask for oral steroids maybe.
Thanks, I started with hydroxychloroquine but had an allergic reaction, so had to stop that one. Which diet do u find helps if you don't mind me asking ?
Hi Crumble324, that's a shame about the hydroxy... so you were in at the deep end early. To start with through a practitioner I gave up all the nightshade family (tomato, aubergine, pepper, potato) garlic, ginger, onions, gluten, cakes and biscuits - because of the sugar - soya, red meat,and dairy... had to give up wine and coffee too for a bit as I reacted badly but they are back on (and if I do I put up with it!) Now I have some dairy mostly goats, still no nightshade or gluten and the occasional red meat. In fact there is a lot of stuff you can have, rice, veg, fish chicken, eggs, gluten free pasta and oats, rice cakes and gluten free all sorts but watch out for the additives, and the sweet stuff as they are full of sugar, expensive. Gluten free flour, rice and gram flour are all easy to use. Sulphites in dried fruits and fruit juice and so on really seem to affect me and certain vitamin pills. Now I add in things and if I flush or feel weird I take them out again! A friend does the FOD diet which has suited him well but it is kind of complicated... I also had acupuncture and herbs for a while at the worst points, both of which helped. You could keep a diary and see how you go, it really does make a difference and you'll see if your hands, fingers or some area goes red and swells. I can't understand why the rheumatologists don't help in this way, at least with some basic information... it's a pain trying to keep track but it will help and though it looks difficult you do get savvy at saying gluten free and so on! hope that helps.
I agree, diet makes a big difference for me but I’m also on MTX, Plaquenil and sulfasalazine. Cut out the obvious stuff like sugar, seed oils and gluten. Also move as much as possible. Even when sore, move daily, sounds counterintuitive but it really helps. Best of luck, it will get better 😊
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