Im devastated to be joining another new board. I have Hashimotos which is well controlled, but over the last 6 months or so ive had 3 flare ups which now point to RA. Firstly my hip, woke up with a bit of a sore hip and over the next 24 hours it developed into intense pain. I managed with ibroprofen as I thought it was a random thing. A few weeks later it happened again but worse so I saw my GP who prescribed meloxicam which was a god send. He also referred me for an X-ray & physio. Again it got better and the X-ray showed nothing. Fast forward to 2 weeks ago, woke up with a bit of a sore shoulder by the next day I was crying in agony. Took meloxicam which helped but certainly didn’t remove the pain. My GP requested bloods which I got back today.
I’m positive for the RA factor and my ESR is 115! Insane t seen the GP yet but it’s not good is it?
What does this mean? I’m gutted and scared.
what’s the best medication? What can I do to limit the effects and prevent flare ups? I’m a bit overweight so I’ll need to address that but does the medication make you put on weight? I’m worried I won’t be able to work, I don’t even get proper sick pay.
I eat well and exercise regularly and just don’t know where I’m going wrong.
Sorry I’m feeling very sorry for myself right now.
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Whatnow1973
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So sorry you’ve ended up here - a forum which helps and advises and supports but one which nobody really wants to be a part of!
Not surprised you’re scared, upset and panicking. This is a significant disease, not to be dismissed and needing long-term care and medications possibly for life. That’s the bad bit. The good bit is that there are many, many people living pretty normal lives with RA once they’ve been diagnosed and put in front of the rheumatology team for the right care.
It takes time, a great deal of acceptance on your part and help and support from your nearest and dearest and work management and colleagues. RA is a registered disability so your employers will have to give you all the benefits you need in terms of workplace adjustments and time off if necessary with no penalties attached. You need to talk to them if you are employed by a company.
There’s masses of help on this site and the best place to start is with the wonderful staff on the NRAS helpline where you'll get balanced advice and can be signposted into other organisations.
We’ve all been through what you’re going through now - some of us have had RA for donkeys years, others, like you, are newly diagnosed but we’re all in the same huge boat and will give as much of a lift as you need now and in the future.
You’ve done nothing wrong in being given this diagnosis as it happens however well you eat or exercise and the best thing you can do is to continue to eat well and stay as positive as possible. You will find that you may not be able to exercise now whilst you’re in pain but as soon as you’ve seen a rheumatologist you should be on the pathway to recovery in a few months. Treatment has massively advanced from the old days and the drugs used now are really targeted to treat the disease.
Really hope you get good, swift treatment - ask questions, find out as much as you can and be kind to yourself. Lean on others and come on here for support. All the very best to you.
Don’t panic! Firstly there are lots of drugs. No one ‘best’ drug as we are all different. Nothing you have done; not even being a bit overweight has brought this on. Be kind to yourself. I would strongly recommend phoning the NRAS helpline; 0800 298 7650 they were so kind and listened to me when I was first diagnosed and have been there as I’ve needed them over the years. They offer practical help; such as benefits and PIP applications as well as emotional support. Look at their publications. They can be downloaded or requested in hard copy and they are free. It’s ok to feel down right now. It really is; but you , your rheumy, the nras and us mad folk on here will help you through. PS I don’t believe any of our medications tend us to put weight on; except steroids and that is short lived and should come off once you are off them.
Please don’t overthink this, most people lead completely normal lives with RA it’s really no big deal. There are medications which work and it’s not like years ago when people used to be really very disabled. Not all sadly but most work as I did, achieve remission through medication and do all the normal stuff. So don’t DrGoogle remember it’s different for everyone and be optimistic it takes time for the medications to work, but often it’s simply trial and see. What works for me might not for you as unlike antibiotics for infections RA is systematic so doesn’t have a one size fits all approach. My best advice to you is keep a note of symptoms and look forward to seeing a Rheumatologist who will prescribe medications and look after you. RA is a minor inconvenience at times but definitely not a disaster. X
Firstly, I am sorry you have RA. Your rheumy team will fine the medication that suits you. We are all different in symptoms and response to drugs it can take a while to find what's right for you but the team is there to help you, reduce your pain and enable you to live a mostly pain free and happy life so don't despair. You have hashimotos so that is the likely cause of your weight gain. Have you had a test lately? Is your thyroxine level correct? Don't be scared. I know it is a worrying time at first but you will be looked after and remember the rheumatology team is there to make life easier, they want to help and they will. We have all been where you are now and we all feel for you. We can't give medical advice on here but we can listen, sympathise, give you our own stories and help you through this difficult time so please keep posting. Lots of love and healing hugs coming your way.
Of course you're feeling sorry for yourself. Who wants another illness to be added to the list. But you've had some great advice from here and once you've seen a Rheumatologist (get your GP to get that underway now) and got onto medication you'll start to feel in control. Methotrexate is often the first thing they try you on. It's kept my pain and flares away and I'm in remission. You're in shock at the moment but hundreds of thousands of people have RA in the country. You're not alone, this site is a great support.
Thank you for your replies and kind words- it really does mean a lot. Still feel a bit down but I know that my pity party can’t last for too long as I need to get on with my life, ( and it’s Christmas)! I will call the helpline today- thank you.
It’s encouraging to see people are living relatively normal lives once treated. I feel I have an early diagnosis, I’ve only had 3 flare ups since May& in between I’ve been ok ish., (mildly aware of my hip). Today I feel like both my arms hurt but I’m not sure if that’s psychological.
Re my thyroid levels- I have an annual check and last one was 3 months ago and all was good. I’ve been on 100mg of Levo for years. I did go up to 125 once but I feel better on 100mg.
I can’t see my work making adjustments. I’m on probation & they haven’t been great to work for so far. I suspect they will let me go if I tell them & claim I haven’t passed probation. I’ll look for another role. The annoying thing is I left a role with private health and great sick pay for this role just at the end of June.
I've just posted so have a look at it! I was exactly the same when mine struck in 2011 BUT now the change is remarkable. I had to try a few combinations until I found " the one" so don't give up . It's good you got the answer and yes lol like you I have lots of other immune conditions, like the buses they come along one afternoon the other ! Good luck , the NRAS website and helpline literally saved me . One day I called them three times and they were so understanding and marvellous!
You will be fine. I was diagnosed in March and started treatment in May. Medication didn't work for the first 2-3 months but eventually kicked in. We are in December and officially my meds are working. I am almost leading a normal life. It will be the same with you. I know it is painful, shocking and I still occasionally feel pity for myself that I have this condition. Speak with someone about it. Let it all settled in your mind. Don't let others to quiet you. Be kind to yourself and do what is best for you. It is a process. And you may have to stand alone in that but we are here to support you. Once you inflammation markers go down you should going back to your previous self. At least as much as is possible. You will be able to work and enjoy life. Perhaps slightly modified version but not in so much pain. Be positive. Best wishes.
I paste myself with activities. And sadly don't jog anymore. When I feel I am getting tired I just listen to my body. Sleep super important. I can't stress enough. So no late movies for me. I do work from home when unwell instead of going to the office. I am lucky to have job like that. But since my meds started to work I go to the office(it's a 2 hrs one way) every time I need to be. I also eat healthy. I have removed processed food, sugar and gluten from my diet. Started taking omega 3, vit D and B complex. The first 2 are super extra important. My diet is also very rich in sour fermented food full of probiotics, vegetables and fruits. More organic less from the shop shelf whenever possible. No pizza no pasta, no red meat big no no to fizzy drinks. I drink a lot of herbal teas, ginger is my number one. Less almost none regular black, green tea . Little coffee and plenty of water. I have installed water filter in my home too. You can do it too. All the best.
I have ESR that barely registers that I have an whole bunch of autoimmune conditions, despite having severe Rheumatoid arthritis, so I wouldn't worry too much about that one result, ESR seems to be quite specific to each person.
You said you don't know where you're going wrong - the answer to that is you picked your genes unwisely at conception! It's a genetic condition which then triggers your immune system to overreact at a random point in your life. It could be a virus you had recently, it's ten times more common in women, so we think our hormones are part of the problem, stress doesn't help and is the trigger for some of us, sunlight can be a trigger particularly for the related condition lupus.
What can you do - try not to stress (easier said than done in the circumstances!) ask your doctor for your vitamin D levels and start supplementing vitamin D3, take it easy and ask if the GP can prescribe an anti inflammatory. Don't take the anti inflammatory for a few days before you get to see the rheumatologist though, they need to see you at your worst to assess you.
Hello, don’t be too worried about the markers, they will go down with treatment. My highest ESR was 149, took a while to get back to 21, which was my latest set of bloods - trial and error, mixing and matching different medications until you find the one which works for you.
Markers will go up and down throughout your journey, it’s just the inflammation that’s going on in your body at the time.
But as others have said, it’s not one size fits all, everyone is different and not every medication works for us all.
I hope you’ll get it sorted soon, and we are all here for moral support when you need it.
All sorts of amazing advice given but when you have your rheumatologist appointment wearing clothing you can take off and put on again quickly, taking your diary of symptoms with, maybe, a brief synopsis of what and when to give them, a list of current medications, family history and sensible undies would be helpful. It seems each rheumatologist has their own protocols but mine started with examination, taking a history, oral steroids followed by confirmation, a chest and wrist xray, a scan of affected joints and a prescription for Methotrexate.
so my go surgery just said that they want to repeat the boood tests in a month and that I should make routine appointment, first one Jan 16th. Do I push back on that? Perhaps my GP feels this isn’t definitely RA?
RA is not easy to diagnose and given by a rheumatologist. Your GP will be wanting to ensure that the first tests weren't simply a blip. If the results show the same rh factor etc they will be referring you to a rheumatologist. I reckon they're just being very thorough, which is a good thing.
I suspect your GP is taking a Belt & Braces approach by advising repeat blood tests then if necessary, he will expedite further investigations with a rheumatologist. Armed with a double ‘confirmation’ set of blood tests plus your notes (as per Gnarli’s advice), you should soon feel more informed and able to move forward towards helpful treatment. No doubt the rheumatologist will want to work closely with whoever is treating you for your thyroid issues….but do be as proactive as you are able at this early stage….it will se4ve you in good stead. I wish you good luck with your progress, now relax and enjoy your Christmas!
Hi your gp will refer you to a Rheumatologist next year if blood tests suggest you definately have Inflammatory Arthritis.Some people's blood never show RF it is known as sero negative.You will probably start on DMARD's first such as Sulphasalazine,Methotrexate,Leflumonide.It is a case of try and see if one helps.After this there are various other meds we are all different and there are plenty meds to try.It is a shock when you first find out but you will learn to accept.I also have R A positive,Hypothyroidism, last four years Polymyalgia joined the party.I have learned so much from all of these forums.Everyone is so kind and helpful.Wishing you well on your journey.
had a chat with my GP. I’m going to go with his advise as he said he want to see if my ESR is still high in a month, higher or has gone down and then treat from there.
In the meantime I’m going to research, enjoy Christmas but focus on my health, walks & family time xx
Dear Whatnow1973, It's early days and I'm sure you're just digesting everything. This online community will be a great support for you. The lovely ladies on the NRAS helpline 0800 2987650 are available with advice, just for a chat or as a great sounding board, Monday - Friday 9.30am-4.30pm, please give them a call - they'd love to hear from you. They will close for Christmas tomorrow at 4.30pm & will reopen 9.30am on 2nd January. I hope that you enjoy Christmas. Good luck
I’m the other way round, I have had a diagnosis of a rheumatoid condition for 40 odd years and now I’m in the first steps of finding out about about Hashimotos.
I have Hashimotos and how could that be confused with RA it’s a simple antibody test. It comes back positive for antibodies and then it’s an AI diagnosis. You’ve been really let down as It’s so easy to treat and so common it’s beggars belief it’s been missed. Even a simple look at your neck or eyebrows gives it away. I’m shocked to read of your problem but on the up you’ll get free prescriptions.
It took 2 years for my Hashi’s be diagnosed and I did the research in the end. I had a goitre and had lost the edges of my eyebrows plus a toms of other symptoms . My GP said he’d only seen 2 cases in his career and so that’s why he didn’t think of it! (He is no longer my GP).
I was diagnosed over 40 years ago by a GP when I said I’m really tired all the time, who then felt my neck, looked at my eyebrows and did a blood test. I’m surprised your still alive as left untreated it kills as people fall in comas and die. It’s really easy to treat but I find the GP hard to believe as I thought it’s really extremely common just treat with thyroxine and forget it.
Yes I was subclinical too & my GP said ‘watch and wait’! However I was so poorly by this time, so tired I’d go to bed at 7pm. My consultant referred to watch and wait as ‘waiting to see if the dog is going to bite your leg off or just do a bit of damage’!
I really hope you get it sorted. I had private health at the time and so was lucky enough to be able to be referred very quickly to a consultant but also one who was a thyroid/hashi’s expert and my life changed quite quickly once the medication kicked in. I also stopped eating gluten on his advice which also got rid of awful IBS I’d been different from for years.
I think your GP is right, get retested and see what they say, a raised ESR and positive RF doesn’t necessarily mean it’s RA. It could be something else so don’t panic until you get a firm diagnosis. Ask your doctor to do an anti CCP test as well as the others as that’ll help diagnosis. Good luck and I hope it’s not RA 🤞🏻
Thanks. It could be something else but what?? Anyway, I agree a retest is worth doing and it’s only a month. I’ve been very stressed so perhaps it was a huge stress response x
there are many things it could be, further testing can find out. Your ESR shows inflammation not necessarily from RA, your positive RF isn’t a definite RA flag as some people can be positive and not have RA. That’s why a retest is good if you are not debilitated with swollen joints and in great pain constantly 😊
I spoke to the help line yesterday. They advised me to ask my GP to refer to me to rheumatology now and then retest in a month (on the basis that the referral can be cancelled). But I feel awkward doing that, my GP surgery is very good & I don’t want to push too much. My positive factor level was only 34 iu/mL [0.0 - 15.0] and I’ve seen people saying they were in the 1000’s.
Enjoy your Christmas & wait until you have had a consultation with a rheumatologist before you get in too much of a tizzy…..because in today’s climate a rheumy consult could take a while.
There is NO BEST MEDICATION…….what suits one person…will be of no use to somebody else ….so listen to your doctors..not patients.
Your GP will be wanting to get a good set of results to show to the rheumy, so relax …..hopefully your symptoms will all calm down by the New Year.
You are not going wrong in your lifestyle . Every doc ive spoken to says that developing RA is ' luck of the draw' . It seems to be beyond our personal control whether we get it 🤷♀️. There are factors which can make you more predisposed to having it ( a close relative having it etc, although thats not a given). I have hypothyroidism and certainly thyroidism of any sort seems come hand in hand with other autoimmune conditions. My RA factor was 300+ when i was diagnosed. Its a matter of getting the right meds to control your symptoms , which can be tricky but you will get there.
Hopefully you get a prompt appointment and diagnosis and start on the meds .
This forum is sooo good , with lots of people who listen and understand so you have already made a good start. All best wishes 🙂
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