Hello, sorry I'm asking lots of questions at the moment as it's all so new to me. RA diagnosis confirmed last week by consultant (although the letter uses words like 'think' it's RA and 'if it doesn't resolve' with a Kenalog jab. I have my next appointment in 2.5 weeks. In the meantime, 8 days since my jab, I have found my knees have improved but that's all. To be honest other joints feel worse. I had expected to be skipping around by now (as you do ). The consultant suggested methotrexate as a possible next line of treatment but it's not clear whether that would be offered at the next consultation (I may not see the same consultant as it is an urgent referral). People (who don't have RA) tend to tell me of so and so that they know who got on the right drugs and now are completely well.
So my question is: what is a realistic outlook. How long is it likely to find the right treatment and with that treatment how 'normal' can I expect to feel? Even if I feel normal, should I expect to have a significant amount of bad days or suffer more with common illnesses. I ask this firstly because the way I feel now makes me want to quit my job but if this is temporary, it would be helpful to get an idea of how long I'll need to weather it while awaiting the right treatment. I need to help my employer help me by giving a realistic idea of what it will be like to work with RA. So far they have been very understanding but it's a small company so one person not working at anything like full speed means that others have to pick up the slack which makes me feel guilty.
My thought is to offer to go onto contract work so that I can agree to what I feel up to and only get paid for that. If the long term is going to be unpredictable, I think that this is the best option but if I'm likely to find a level that I can work to, I could just reduce hours - while a more stable option I know from experience that this can lead to ramming similar levels of work into fewer hours. While I'm not looking for careers advice, hearing your experiences with treatment and working may give me a better idea of what to do.
Thank you for reading all this!
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Gottarelax
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I think that you may get many different answers as it's different for everyone but I would say not to make any decisions too quickly. NRAS have a great helpline so it would be worth ringing them.
Please don't apologise for asking so many questions. That's what we're here for. It's a very uncertain time. I remember having the same anxieties at the beginning and there was a time when I really thought things would never improve. But they did, and here I am , 15 years later, and doing ok. I would agree with Boxerlady . Everyone's experience is different. And I too would say don't make any decisions too quickly. I didn't, and I'm glad .I remember when I was first diagnosed, NRAS were very helpful and they had some very useful publications about RA and employment, including support on how to approach the subject with your employer. I think there was one specifically for employers . Sorry to sound vague but it's quite a while since I needed them 😁 Please try not to feel guilty about work ( easier said than done, I know) .I managed to work full time for many years, teaching ( now retired) with ' reasonable adjustments' made to support me. I don't want to make assumptions but I would think that employers still have an obligation to make them? It would be worth looking into this.
Re medication- that really does vary with each person. My experience was always positive. I sincerely hope you get something that works for you, quickly .
Thank you MadBunny, I am grateful for the epicness of your post It's good to hear of positive outcomes. I will certainly contact NRAS and try to get hold of their publications. Having one to send to the employer would be very helpful too. Part of the issue is that I am in a high stress/long hours job. I was considering how it was affecting my work/life balance before the RA set in. My daughter has special needs so it was already tiring. So in a way, using RA as a motivation to reduce hours wouldn't be a bad thing even if I was to feel totally better in the long run. Kudos to you for continuing to work as a teacher full time - that must be exhausting!
It was! I was head of department.I had to give that up, reluctantly, but it was the sensible option. I gradually went part time . For a long time I was in denial and thought I could do everything as I did pre RA. I'm very stubborn, too lol.But the reality was somewhat different. And it was the quality of life- work balance which made me decide in the end. Wishing you all the best x
It's interesting how health problems can sometimes make us think seriously about something we have been considering for a time - almost as if it gives us permission to put ourselves first for once. I think that you're right to get as much information as possible and then to take as much time as you need to think things through.
It took the best part of 18 months to be put on drugs that stabilised my condition. The first five months of this was waiting to see the consultant. I was unable to work at all for the three months after diagnosis and for the rest of the time I was struggling in and doing what I could. My employer was very understanding as they needed me there and would do whatever I asked to accommodate me. I was started on methotrexate which did little, they then added in sulfasalazine which did nothing but made me very down, finally I was approved for Humira which worked like a charm. From then I did not have one day off work. Others have a very different journey. I would not make any big decisions unless you have to. Until you know the course of the disease for you it is very hard to make wise choices. I have gone from 18 months of hell, unable to do the simplest of tasks to being able to do pretty much anything I want to. I garden, walk, cycle, ski. My consultant promised me he would get me back playing tennis, I didn't believe it at the time but it was true. Each drug they try needs time to be assessed to see if they work, this makes the whole process rather time consuming. Hope it all goes well for you.
I'm sorry you had such a long journey to diagnosis. At the moment I'm working when I can but some days I just feel like staring away into space. I try to get focused and work but I know that I'm not doing much. In some ways it would be better to sign off completely and forget it but due to work circumstances (we are in the process of some big transitions), it's helpful to have me available for queries that only I could answer. I love that you are now doing all those activities...My aim is to be able to run with my dogs again.
Don’t rush into anything….. because not even the best rheumatologist in the world, nor anybody on this site can give an accurate forecast on how you will react to your first RA medication.Methotrexate is regarded as the Gold Standard & personally I swallowed the tablets like Smarties for 7 years ……then it just stopped working….but that’s RA for you…many stay on it forever.
You will no doubt have read the horror stories re any RA drug…but please remember for everyone who fails on a particular drug….many, many have great success. Also….those who fail on a drug, often have other health problems…& it’s their other conditions that cause the problems.
So don’t give up if the first meds you try don’t put you where you want to be.
It can be a long haul….but do try to bite the bullet if you have really bad days…it will get better…but it’s not always a walk in the park.
Listen to your rheumy, & explain to your boss that RA is not an exact science….so you won’t be able to make any work decisions in the near future….don’t burn your bridges by giving worst case scenarios.
If you think it would help….ask your doctor for a sick note to tide you over.
But don’t make any moves you can’t go back on.
A good life with RA is definitely possible…..I am 20+Years down down the line with it & I’m doing fine….& these days there are so many more good treatments available than there were in the 1990’s…..so I really hope you will be fine way off in 2042 too!!
Thank you agedcrone...I have a feeling that my question may be similar to how long is a piece of string or how deep is a hole. Fortunately, I have a very good relationship with work and I know from past experience that they will try to help but I am now realizing that for a while before the symptoms started I was feeling burnt out (perhaps that was onset without me realizing?). It's been an horrendous few years leading up to the diagnosis due to other family illnesses etc and I buried myself in work... so now I'm finding it difficult to find my fight.
Having a good relationship with work means you are halfway there.Don’t flinch from admitting you are having a hard time….trying to be Superwoman doesn’t work with RA….just go at the pace you feel comfortable with…in fact once you stop feeling guilty & just get on as well as you can it will be a weight off your shoulders.
You are allowed a good old whinge here….you will get lots of helpful advice.
I had just retired when I was diagnosed….so I didn’t have the worry of sorting things out, but RA sure did put the mockers on all my plans for a while…but I got the right treatment, & I was soon off on my travels, & as I said I’m mostly getting along fine now.
I hope you get put on some Disease Modifying Drugs soon….you may not see the same consultant, but most Rheumatology Departments have. teams who look after each group of patients…so don’t be thrown if you see a Registrar…..whoever you see will prescribe on the advice of the lead consultant.
Good Luck….do let us all know how you get on,…..downs as well as ups🤭
If you'd like to speak to someone about how you are feeling or regarding any concerns you have, or support you may need, please contact our Information and Support Team on 0800 298 7650. We have information for employees and employers as well.
We also have a website nras.org.uk which has information and resources which you may find useful.
Thank you, I've just discovered all of the help booklets and have now downloaded a stack to read through, including the employment related ones. I'll get in touch if I still need reassurance or guidance.
We are all so different to our diagnosis and meds and also personal lives whic also affects how you cope too whether at the start of RA and friends journey or 3years in.Don't rush or expect its miracle moments. If the miracles happen ie the drugs work then great but always expect 13-16weeks in your head so you don't set yourself up for a fall. If something does not work or make you feel great ie side effects talk to your RA team (check if they have an email for you to pop an email too if things are not going well).
Keep a diary on your meds and what happens as you start feedback helps but also if you get brain fog moments it helps put it all into context.
You will see the words PACE or REST- most of us are awful at it but some how you need to learn it. 3 years and I am still learning but do have the odd week I GET it!
Call NRAS - I have had moments I just don't get it or frustrated and they give you ideas on how to move forward or an ear that is not a family/friend who does not get it.
Work- talk be open and maybe adjustments will be needed - I tried so hard to stay upright at work and it just made it also worse so think what can be done to make life easier. If this means reducing housework or going out so be it. PACE & REST
Thank you Deeb1764…it’s helpful to know to expect 3-4 months as a starter. It will help me start a new conversation with my employer. I think they have the impression that you get your consultation, start your treatment and back to normal in a couple of weeks. To be honest, I thought this would be the case with my Kenalog injection but here I am hardly different 2 weeks later. Personally, I’m not complaining that it will take time to get it right, that’s just how it is and I’ll cope but it helps that everyone around me is aware that it’s not a quick fix too.
No quick fixes. I have looked at my notes and to see consultant 12 weeks to start treatment another 4 weeks then 16 weeks later we had to give up with first drug so another 4weeks wait to see RA team then another 4 weeks for the next drug then 12 weeks allotted to see how it went (only lasted 2 weeks on 2nd drug). SO lots of time goes IF you do not get on with the drugs or have side effects. Work was hard but we worked out a routine of 2 days on took MTX at night then next day off then 3 days on this did not work so tried all different patterns. So it was good as they tried so hard to work round me and my reactions to the drugs and the RA.
Thank you! Things have been good so far and I was fortunate that my GP was really on the ball so I had the right blood tests done straightaway and although it was slow to get my first GP appointment I had the test results which helped her get a quick rheumatologist appointment (6weeks) and then a second urgent appointment 4 weeks later. I must admit I am worried that for example if I have an adverse reaction to a drug or it just doesn’t work, I’ll have to wait weeks/months for an alternative
I went thro the wringer a bit with some of the drugs but mentally I was get back on the horse I want to protect my joints and get my life back, So perseverance and being stubborn helps! 🤣
I’m going to have to learn…it took me to get to the stage of not being able to dress to make the GP appointment…admittedly that was only within a month of starting to get stiff.
Everyone is completely different. Do not give up your job/ hours etc. contact Occupational Health & get them on side. Any decisions you make quickly can drastically affect pension etc. Patience is your new goal. ‘You have no idea’ is the only thing you can say with certainty. Do not give things up to please/ appease others. If you are in a Trades Union get them on side. You have rights. Read up on them.
How long things take to stabilise depends on many factors. Focus on getting through each day as best you can. Learn to pace and rest. This is essential. Good luck x
I’m in a small company, I know they will be supportive as they have been to colleagues in the past. however, i also know the impact of my sick days/ reduced performance on colleagues which makes it difficult. We are a not-for-profit organisation, so there is also the impact on the work that we do to consider. Pension is also a concern though.
Hello Gottarelax,Sorry to hear you’re feeling so lousy. 3 year’s ago I was in exactly the same place.
My advice for now would be speak to NRAS - they were great when I was at my lowest ebb. I’d really avoid making any long term decisions (like leaving your job) at the moment. Take the medication you’re given.
In the longer term: after a couple of medication changes my RA is currently completely under control (& long may that last!) and I’ve not had any infections. I work 4 days a week in a pretty senior role and take quite a lot of exercise. Good luck!
Great to read that your symptoms are under control and that you are able to continue with reduced hours. Are your employers flexible or are you fixed hours? Do you have times when you just feel too fatigued to work even with reduced hours?
As others have said above, once you get on treatment that suits you, you should be able to carry on more or less as normal. I've been on MTX for over 40 years, since I was a teenager. I was dx age 6, went through school with it and worked full time for 22 years and had 2 healthy babies. There are better treatments available now than was offered to me so hopefully things wont have to change too much for you. You will learn to live with it and adapt. Good luck.
I wouldn’t make any hasty decisions. The first few years after diagnosis my RA was well controlled by medication and I carried on pretty much as normal and was working part time but with lots of overtime and long days sometimes. I had to stop that medication and was moved to one that was not as effective and I struggled for a year until I was told I qualified for a biologic drug. I was on no medication for about 4 months until I could start the biologic and I was in a massive flare. Was off work for 5 months until the biologic truly kicked in. I went back to work just doing my contracted 5 hours a day and four years later my RA is still pretty well controlled. A few months ago I reduced my hours down to three days a week, partly because the RA does make me tired but also because I am 64 so I am working up (or down?!) to retirement.
I guess what I’m trying to say is don’t make any hasty decisions as the situation can change considerably. Hope everything works out ok for you whatever you decide.
As everyone has said, it’s how long is a piece of string. For me personally, it took two years of misery until I went on to biologics which put me into remission. Hurrah! Now back in a flare for the first time in four years, so had a pretty good run at it.
Work wise, keep talking to your employer. I’m an employer so come from that angle and here I am, still running a growing business but, and the but is, I do pace myself. I take Wednesdays off completely and generally work 10-3 the other days. I’m fortunate in that this is my choice of course. I do have employees with autoimmune issues such as Crohns and RA and we work together to make sure they’re not at the end of their particular rope.
As others have said, don’t make any hasty decisions that you may well regret. As hopefully, you won’t feel how you do today forever 💕💕
Fortunately it is possible to have honest conversations with my employer, until now it’s been ‘I just need to get to the first appointment and I’ll know more then’. Now it’s getting through the 2nd appointment but I think that I need to be open about the fact that beyond that is not predictable.
Yes, i think you’re doing exactly the right thing. Particularly as things will change. It’s always tougher when it’s a small business as they generally run very lean with tight margins. Your employer won’t want to lose you and for you, doing something hasty may be something you’ll regret when you’re ok again. Which hopefully you will be.
I thought at one point ‘this is it’. Dragging myself to 6.30am networking meetings wearing compression gloves and barely able to get over the step into the door. Looking back, I have no idea how I did it. But, once the right meds kicked in, all that disappeared. Well, almost! Stairs are still fun, but I deal with that. Compression gloves consigned to the bin long ago.
Just hold on as best you can as it will improve.🌻🌻🌻
Hi. Be prepared for a long journey, and lots of changes, and if you find the right meds quicker than that then you’ll be pleasantly surprised 😁. For me it was 2.5 years of feeling awful before thinking I could resume a “new normal” life, which I’m still trying to negotiate. Be careful with stress. Stress makes RA worse, and worse RA makes life harder, which causes more stress… For me, in the end work had to go. I’ve been on the sick for 10 months and don’t want to go back to my stressful job. Every time I see my rheumy I ask “is this as good as it gets”. Last time the answer was kinda yes - I’m fatigued all the time, not working, my mental health is poor, I’m stiff like a board when I wake, but in the positive I can walk the dog, do stairs, drive, stand in a queue etc etc. But I’m still hoping he was wrong and it can get better. Good luck with your journey xxxx feel free to message me if you ever need to chat xx
I had that moment with my consultant as I asked is this as good as it gets and he replied right now yes. He knew I prefered honesty and though it hurt to hear I knew I could rebalance stuff in my life to make things easier. I jus wish on my first consult they were more honest so I was more mentally prepared as I prefer to know it all and feel we should be given options of how it can be.
Sorry it’s so difficult for you, I can just about get up and down stairs, tried driving again the other day and can’t do gears now. I’m really missing my dog walks…that will be a great step forward to go out with them again. I hope that your new normal improves, especially the fatigue.
Update… So I arranged a meeting with the bosses and gave a realistic view of the uncertainty of the road ahead and am very pleased with the outcome. I’m now on 16hr week and will have quarterly reviews in which I can increase or reduce hours. However, if in the meantime I feel I can do more I will be paid accordingly…seems like win win to me!
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). The consultant suggested methotrexate as a possible next line of treatment but it's not clear whether that would be offered at the next consultation (I may not see the same consultant as it is an urgent referral). People (who don't have RA) tend to tell me of so and so that they know who got on the right drugs and now are completely well. 
Why are we reminded about our lifespan being reduced?
I'm being pulled about like a puppet
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What is the next course of treatment if NONE of the RA medications work?
Worried about loosing job
