I’m never sure when to ask the nurses for help/support with my RA it is with that in mind I write this post.
I realise some things I have to manage and cope with
First started with symptoms around February this year stiffness etc. Went to GP finally in may as the symptoms didn’t subside. Waited quite a while for an appointment all the time mornings were difficult with the symptoms and feeling unwell , which slowly subsides by middle of the day.
I saw rheumatology in August diagnosed with RA and possible Ostio A.my CCP (bloods) were 195. The X-rays showed some erosion in my hands,
Finally In September (this month)I got hydroxychloriqune 200m began to take just over 2 weeks ago. Realise they take a while to kick in 3-6 months maybe, nurse said I would probably need something stronger in future
im struggling in mornings my hands still very stiff my concern is what damage is being done while I wait l.my next appointment is mid November with nurse,which the hospital say is the earliest they can give me.i have to kinda roll over in bed to get up to stop my joints hurting.
My concern is when should I alert them when should I call, I’m new to this and I don’t know what is normal in the process and what I should tell them about. The stiffness and awful feelings have not subsided since i started with it all,
Feeling down.i don’t like to bother unnecessarily as I have anxiety and worry about calling when it’s unnecessary
Any thoughts guidance appreciated
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I completely understand anxiety, I have had episodes of anxiety attacks all my life periodically. Unfortunately, it can stop you doing the right thing.
If you feel the need to contact them, do it. If you think you are being a nuisance but are worried, do it. You are important, controlling your RA is important. It is vital to prevent RA doing you damage, so do it. Nobody should suffer long term pain if possible, so do it.
I guess you are getting my drift now. But most of all, as the ad says, do it because you are worth it!!
It is hard with the fatigue, pain etc but you can do it. Keep going, we are with you.
Thanks so much RAGuy ..it helps to feel validated.
By the way I used the hot water on hands and it was definitly soothing and helped so thank you for that too!
Feel so bloody down at the moment I hate going on about illness but as it’s new to me I guess I’m also finding out things , ways to help myself, I’ve always been rather active. My new garden is lovely and I want to get on with making it even lovelier 😊
I’ve decided to give the nurses a call after the weekend, not sure they are there weekends anyway. Will call and explain my concerns around damage that may be happening while I’m waiting for stronger meds or to be seen ..
Thanks again.
Hopefully soon ish I will be feeling a lot better 😊
Take care and anxiety is the Pitt’s too sorry you know what it’s like
I am a volunteer for NRAS. It helps me to support anyone in any way I can, so that is a win-win! Your journey will be different from mine, but it will overlap many times with mine and many others. That is what is great about this community.
I will always try to distil advice into common sense approaches to help you and others.
No question is wrong, so fire away anytime. At this time, I am trying not to overload you with too much.
If I may, I will send you a link to a support chat on Zoom I join, where you can chat with others with RA or just listen in. No pressure, see how you feel
Yes a link would be great. I’m taking in information to help myself so I can learn to manage things, so that’s great. Although you are right , I do get a bit foggy headed when overloaded 😆
I’m finding this community helpful and it’s so good to be able to ask when concerned. It alleviates some of the anxiety.
I find swimming is brilliant to help keep my joints moving and mobile. I'm 7 years in still stiff in mornings, lots of painful joints and periods of feeling down. However, swimming is great. You can move and be pain free for a little bit of the day
Here is the link I promised. It is for a Joint Conversation. It is for fellow sufferers of inflammatory arthritis. A couple of NRAS volunteers and Ampersand Health will host it on Monday, October 7th, at 7 pm for an hour. It is free. (Free is one of my favourite words!)
Hi RAGuy, thanks for the supportive replies and the suggestions.
Just to clarify, the support chat being suggested is a non-NRAS group, but please feel free to contact RAGuy for the link if you feel it could be helpful.
I was just like you - I have been diagnosed 3 years. I’m a nurse too and didn’t want to mither but didn’t know what was acceptable aanot and felt so low. I phoned the NRAS helpline and they were fantastic and encouraged me to contact the rheumatoid nurses. I had already read every leaflet, every bit of self help I was doing. I had supports for every joint, pads to put between joints to sleep, compression gloves, heat packs - all of which gave a small help but not enough. I had gone from being active to not being able to pull up my knickers! I am now on methotrexate injections and Amjevita and feel like I have my life back. I look back and know I should have contacted them at earlier stages instead of suffering
Seeing all these posts aboutvRA symptons, Im wondering if everyone having this disease was diagnosed through blood work test showing seropositive RA, I have read even if test shows seronegative can still be RA?
Briefly, Yes. I know people who are seronegative but have RA. I am only just seropositive, according to my consultant, but I have a particularly aggressive RA, he says.
We are all different, and so are our immune systems. RA is a gift that keeps on giving, including little surprises!😀
I was sero negative for RA test but had high anti-CCP. I was told that this is also a strong indicator for RA. I was in a lot of pain, knees and hands were worst. It made it very difficult to do anything. After a couple years on hydroxycholoroquine and trying methotrexate, I started Embrel and have been mostly fine ever since (maybe 6 years so far)
You can probably find a lot more about it on the info on this site, but anti-ccp is an auto-antibody, an antibody that works against your body's normal antibodies. It often is elevated in early RA when the rheumatoid factor test may be negative. It is one of the many blood markers they test when trying to diagnose someone who may have some form of inflammatory arthritis. I don't know if it is elevated in PMR.
Embrel is a brand name for the original etanercept, a biologic drug that is effective for many people in treating RA. There are biosimilar drugs, one of which that is used a lot in the UK is Benepali. I don't know if it is used for PMR. There are many auto-immune inflammatory diseases, and many RA medicines might target one more effectively than another.
I had bloods and ccp was over 195, plus X-rays showed erosion in hands, so I think that was a clear positive, although I realise things can be negative and still someone can have RA.
I was seropositive - high activity and anti-CCP high. RA was high activity in all joints - hands, feet, wrists, knees, elbows and shoulders. The only blood result that didn’t rise was CRP
if in doubt shout! It’s better to touch base and they can adapt, calm or discuss options and other things to assist you.
Part of the process is understanding your disease and how it affects you, so for my first year I kept a journal of what was happening and when. It took a long time for me to find a drug that worked ie 5 tried and now I am off medication and all hell has broken Loose!
So I call and find out what can be done but also accept some days the pain is there as it’s part of the process.
I also use The Wren Project for the periods my brain needs to rant and this has helped a lot too!
Yes, that is another good tip from @Deeb1464. Journals are great for tracking symptoms and remembering how bad you got when in a consultation. Nowadays I use an app butthat is the same
As above, I was diagnosed in April after 2 years of chasing a diagnosis.hate to think what damage may have been prevented. Have osteoarthritis and fibromyalgia.The team at NRAS are amazing, I have had information leaflets and 2 or 3 chats with the supportive volunteers.
Also... I doubt there is a month goes by when I dont send a msg to the rheumatologist nurses for help or advice. They are there to help and support as best they can.
On a practical level, aside from meds,I use a mix of ice packs to help inflammation ( therapearls best ) and a flat heated wheat bag to sooth stiffness a little.
I know it can be a but overwhelming and scary, but I find arming myself with knowledge of these conditions helps me understand better. ( btw, do not Dr Google! Use respected sites,my GP recommended NRAS and Versus Arthritis sites )
And take comfort in knowing others understand how it feels, people on this forum are so kind and giving. X
At least we do have those rheumy nurses and how knowledgeable are they! They’re very helpful I should imagine. I’m going to give them a call next week.
NRAS have been very good for me too. I found them and I’m glad.
Definitely keep in touch with your rheumy team,& take care to carry out their advice. By all means of course read about other people’s experiences, but never blindly follow unqualified advice…no matter how well meaning.
Being diagnosed with pmr oct 2016, on prd since then, until this Jan 2024, never had any really bad flares, haf to go bacj to 40 mgs dec 2022 seem to have gca symtons but test showed negative, so started slow taper again, until April of this year, was at 5 mgs then did slow taper to 4 mgs, was coping ok and gp and rhemy encouraging me to continue taper, while has some labral hip tears, glute and hamstring tears, groin snd hip pain, and contd to taper to 3 1/2 from 3 weeks ago, today worst day all over bidy, joint pain, was excruciating, today I increased my dose as suggested on this site by 5 mgs, so 8 1/2 mgs for today, will stay for week see if relief, been a rough few mos
Sadly RA isn't a quick journey and paracetamol may help but it might be worth a call to RA nurse to ask about NSAIDs or GP. Its very early days for you so and the RA medications unlike antibiotics can take 12/14 weeks to work. I'm sorry I wish I could say it'll get better quickly but it may not. Gloves may help and you won't be wasting their time but if you dont speak up they'll think all is well when in fact it isn't. You could be offered a steroid injection or GP might offer steroid pills but they are only a short term fix.
Thank you. Yes I’m realising just what it’s like…I guess we are somewhat amazing what we cope with too. Once we adjust. I guess some days are better than others…
My poor mum. She must have struggled a lot. No meds then for her. Just lots of pain killers ..
I’m appreciating this forum, it’s so helpful to get the different takes on it and the experiences of others, it’s invaluable
My mum had RA and things are very different now. I’m definitely not amazing just in remission so RA is no big deal think how lucky we are, good medications and at the end of the day it’s not life threatening. In my view we travel the RA journey with patience and I’m grateful that we have access to medications that do work for most people. I’d only join an RA group or meeting run by NRAS and on the website there will be a list if you have a local one. They always post if there is an online one to access and so just keep an eye on this page.
I was diagnosed in 2007 when I was much fitter than I am now and, at that time, apart from my hands feeling like they were being controlled by a magnetic force and my knee giving me gip, once I got on the meds I managed pretty well.
I was more affected by aversions that I built up ie, not being able to tolerate injecting myself (even the placebo on a clinical trial) or drug side effects. And I think that taking strong medication can sometimes mess with your head as well as your body.
Occasionally you may get pain in a joint that comes out of the blue but then disappears in a day or two. Or it may affect one area of your hand or foot for a bit and then get bored and toddle off to annoy another joint elsewhere. And you're thinking 'what was that all about?'
This year has been my worst. It's come at me like never before and I'm now waiting for a new drug to kick in. Meanwhile, I've bought some things from mobility shops to help. And I got into the habit of rubbing Voltarol in my joints morning and night when it was really bad. That helped me get moving, even on days that I must have looked like a sloth trying to get out of bed. 😀
Overall, be kind to yourself. And make the call if you feel you need some reassurance or advice as everyone's experience is different x
I would suggest that you should not put up with feeling so unwell. If the Rheumy think you might be coping they will leave you to it, however if you tell them, and then tell them again, if necessary, that you are struggling and not coping, they should do something to help. For example, I know I can get a short term fix, by getting a steroid injection, to get me through a waiting period. My Rheumy, will usually sanction this pretty quickly.
We are fortunate that we have lots of modern medication that can and frequently does, slow down the progression of the disease and give us quality of life,
I would definitely make contact. It’s a bit of journey with the medication. There are also things they can give you short term to help with the stiffness and pain. The best advice someone gave on here was to be the boss of my RA.
Hey, I still feel the way you do 4 years in. I stopped meds for 9 mths because I felt I was getting conflicting info and lost trust. That's was a really rough period. RA plays games with how you view yourself, and it's can take over without you, realising you have made it the main character in your play. Find people you trust to talk through your feelings. My GP was amazing, really saved me. You haven't mentioned steroids at all. Ordinarily if symptoms are bad enough, they will offer steroids to get you through the delay for the meds to work. It could be an kenelog injection or prednisolone tablets, it may help until the meds are fully on board and working. You definitely should push for more help.My husband makes me think of it like it's my daughter, so that way I demand answers and help when it's needed. It easy to no view yourself as important. Think of what advise you would give to someone you love. Then do that for yourself.
Really hope you get over this hump. It's feels overwhelming, so remember you eat an elephant one mouthful at a time ( not recommending eating elephant just for clarity).
Thank you. Yes I like what you’re saying. The nurse did say she felt I needed something stronger in her letter, so I guess they may even be expecting my call.
Reading the replies here has given me the courage to call.
I am the same as you , unsure when to contact nurses - I have a couple of times and she has said give it another week and ring me again if still a problem ! I then don’t bother and try and cope ! I have 6 month rheumatology appointment this week so am writing down all my problems and worries for the consultant who I have only met briefly at the start of this process !
It’s so difficult to know what to do as you don’t want to keep bothering the nurses as they are busy but then they have told me to call or message anytime !
I should ring the nurses and get the help you need - it’s all a learning curve !
Totally agree with everything said already. For 18 months I felt a right pain in the but to the nurses but they always listened and said if you don't tell us we don't know. Sounds like you should have a steroid injection they helped me a lot when I first started on meds and quite a few times in between. You may have to try a few meds to find one that 'fits' I did. But now I'm in remission. Still get really fatigued and flare now and again. But I have steroid tablets backups in my meds if I really need them. They are brilliant but only in short bursts if you are desperate. You will get there, I didn't think I would. This forum saved me, the people are wonderful and helped me do much, on fact they still do 3 years into my RA journey. We're always here for you but do ring your nurse or rheumy when you need help too. X
If you have recently been diagnosed and you are only on Hydro and you already have deterioation, that tablet is NOT enough, I am no dr but I know, You need to be on something much stronger now, I dont know why they are keeping you waiting. Also appt with nurse, in my experience that is a no no. You wont get anywhere. you need to see the Rhuematologist, you need to be calling up the the ruhematologist receptionist and demanding a face to face appointment and asking for help other wise your joints will get damaged further. Sorry have to be hard on them, it is not good enough, otherwise if you dont say anything you will just be in aline with others.
Hi sorry you’re struggling it’s so tough at first. As you’ve only just started Hydroxychloroquine it will take a while to kick in. Possibly up to 6 to12 weeks. Did they tell you that when they prescribed it? For some it may be quicker. I know this seems forever when you are waiting. Can you take Paracetamol for pain. How about a warm bath or shower first thing to help get things moving. Once moving try hand exercises if you can manage. I remember how scary it was at first but with the right meds things will improve. They may add another medication at your next appointment. Ask the nurses if you can have a depo injection to help things till your next appointment. Tell them you are struggling. I hope you get some help & things start to improve soon x
Thank you Otto11 I’m going to chat with them next week thanks for all the tips too 😊 I can’t take paracetamol but bought some ibuprofen joint pain things today , won’t take many but a buffer may help abit. They did tell me it would take possibly 3 to 6 months for the hydro to kick in
Fully echo what others have said. I'm a big believer in don't ask, don't get! So I would flag up your concerns. I have RA and the first year or so is particularly testing and scary but it will get better, it's hard though and like everyone else, we all want a quicker fix. The meds/process does take time in the meantime and I still use them to this day, despite being on meds (I take 400mg of hydroxycholoquine and 10mg of methroxretate now, but I sleep in Isotoper compression gloves each night. I was sceptical about them but they really do help to reset my hands so they feel much better in the mornings. I can feel the difference when I don't use them. I also invested in an online compression hand massage unit, this is a wonderful little tool and I use it as and when needed for a top up. There is also something called compression tape which can be worn on the fingers to help with swelling and inflammation, perhaps ask for a referral to the hand therapy person at your hospital, who will be able to show you how to use it correctly.
I felt the prescription meds only got me so far but my rhemy clearly didn't want to put me on anything else, which I get because it is a balance between managing the inflammation and not lowering immunity too much. I did some reading and found RA affects the synovial membrane in the joints. Hyaluronic supplementation increases the levels of lubrication again but they take time to work, up to 12 weeks. My hyaluronic supplements took 11 weeks and I could feel the difference at this point. I get mine from Weightworld and they are high strength ones. I hope these things make life a little more bearable and rest assured in time you will find things and medication that will help and life will seem brighter. x
Hey. Don’t worry about feeling you’re a ‘nuisance’. Just call them. That’s what they’re there for. I’ve had massive flare ups over the yrs. I have an infusion every 6 weeks. But i had a massive flare. Rang my rheumatology clinic. They told me to go to a&e. I was in total agony. I could hardly walk. Had an absolutley awful time. Maybe you could see if your gp still does home visits. Or you’re MEANT to be able to go to your rheumatology clinic for a steroid injection. My clinic said you have to book one. You can’t just turn up. Which doesn’t seem fair. Anyway. Just call them if u need help. Good luck. X
As others have said, worth ringing the nurse helpline as they may call you in for a steroid injection or even tweak your meds before your next appointment. Mine have to speak to the consultant but then get back to me quickly with a plan - even during lockdown.
my notion is that we must be our best own health advocate and no question should be deemed silly. If you have anxiety over your new condition I say call and ask. You’re not bothering. It’s their job to address their patients questions. Good luck with getting the answers that you seek to satisfy and ease your anxiety over it. ☺️
I waited lots thinking they are busy and not wanting to trouble nurses and doctors. But allowing RA to do its thing could cause lasting damage, now I think of it like I am doing a favour to get in touch and to get a steroid injection that might prevent that and save on needing other kinds of treatment further down the line. prevention is better.
It is horrible at first and things do get better, the NRAS helpline people are lovely, talk to them too.
Hello, I understand how you are feeling, it has been such a shock to me that the medication doesn't work first time and being told to keep trying other solutions doesn't help a fit, otherwise healthy busy teacher and farmer's wife who is used to being the helper and providing solutions!! Frustration levels are at an all time high with the condition, my body
I was diagnosed with RA in January after a 2 month sudden deterioration in my health and activity and was lucky to quickly be put onto methotrexate. However, it wasn't helping and steroids were added to boost it. Then sulfazalazine. During this time my contact with rheum was by email and it was June before I saw a consultant. By that time my knees were hugely swollen, my mobility in all joints was reduced and I ended up in hosp for 4 days with a CRP of 309!
I should have contacted rheum before I got to that stage but was thinking that this must be normal! apparently not!! But when you are used to being fit you just think that this is part of what is happening. Who knew socks and typing would be such an issue!
Then put on list for biologics and, after testing for all manner of other conditions, I started Yuflyma in Aug. Along with methotrexate and sulfazalazine... but it has not hit the spot either and I have had a big flare. So going to try something else!
Almost a year since my first symptoms ( white fingers after a day hillwalking) and there are times when this really gets me down. I had plans for activity hols this year and next which are on the back burner. I know I am letting my husband down on the farm. My pupils at school are not getting the 100 % sprightly and focussed teacher they are used to. BUT I am getting treatment and my school have been incredibly supportive ( I have a bed I can go to if fatigue or pain hits!) and occupational therapy at the hosp have helped a lot. Also physiotherapy...it often depends on getting the right person for you.
So my advice is to keep firmly checking in with your rheum team and GP, even if it is just to update with positive symptom relief. I now send a fortnightly email. They can address what they need to and the emotion which overcomes me when I see someone F2F is reduced as I can type what I need to ask in a sensible manner!
I have found this initial year a roller coaster and wish I had found this forum in the early days. I don't like the idea of a 'new normal' but am accepting it more now.
hey Womble57 what a journey ! Thank you for sharing.
These replies are truly helping me to realise I have to speak out …I totally recognise what you say about thinking this is just how it is …I’m learning fast.
Hey. I wish i had, had this forum when i was first diagnosed. But i was told when i was 21. (In the 90’s). So it was impossible. My mum was a nurse though. So i was very lucky. She was a lovely, kind, funny mum. I could always talk to her. As i’ve said. I hope you get sorted soon & in the meantime. You can always come on here. Anytime. Moan to your heart’s content. Everyone on here totally understands. It’s a scary time when you’re first diagnosed. But at least these days, the treatment’s better & there are more options. So in the meantime. Why not get a nice hot cuppa? Give yourself extra time to get up in the mornings. As i’ve said. There’s nothing like a good comedy to help ease the pain. Try & buy a heatpad. They can really help relax & soothe you. Especially on a cold morning. Good luck again. X
It must have been so difficult to be diagnosed at 21 , so glad you at least had your mum and she was so supportive.
I bought an electric blanket a few weeks ago, put it on the bed last week, it’s quite unbelievable the peace you can get even for a short while with that heat on your bones 😊
I used to kinda jump up in the mornings , now I feel a bit more lifeless and demotivated. So I’m generally slower but in all honesty I reckon I needed to slow down a bit. I’m a constant worrier doing this and that so maybe I’m being told indirectly to slow down. 😊
I’ve left a message today on the phone to ask for a call.
That’s a rather big step for me, and I will ensure they know
Like i’ve said. The weather’s getting colder. When i’m sore/in pain. I just love getting something funny on my tablet. Get into bed with a hot bowl of soup. Heatpad, painkillers & i let out the biggest sigh of relief. Just spoil yourself a bit! X
I have found better to call RA advice line sooner rather than later, especially when in pain, a flare. In the early days they want to help you understand the condition and how to manage it so are happy to hear from you and will answer your questions.
Read up on this site , also sites like Versus arthritis to see what's typical with your RA, I have Osteo arthritis too. Early days are difficult so much happening and lots to take in , write down your concerns to ask so don't miss any out.
Regarding your anxiety were you getting support for this prior to RA diagnosis? If not getting support for anxiety contact your GP see what services they offer for this?
I’ve called this morning and left a message for someone to call me 😊
They say I have ostio too.
I have had lots of therapy fr my anxiety over the last few years. I think it was all hidden away as I was a workaholic for my work life and that was for forty odd years 😱 it all got the better of me in the end !
I practise mindfulness which does help, it’s just those days when nothing seems to work that are horrid ..
I totally agree with you sooner rather than later is best. I’m glad I got the courage from you all here to do the call 😊
I thought that you might like a thread I started about an anti-anxiety exercise I've found very useful. It might not be new to you but just in case....healthunlocked.com/nras/pos.......
Hello from South Africa, I too am a. Dontvwait, check in,. Watch your diet, rest often and sufferer of RA Exacerbated by Chronrs disease. I do not wait when I'm out of or feel I'm not coping, it's painful and draining.
Have regular check ups with your physician, this is an Auto Immune disease
Unless you suffer from this, nobody really understands how draining it can be.
Rest when you need to, don't try and be a hero I did, reach out.
I have regular infusions of B, magnesium, iron. My GP keeps me on track.
Therapy helps me not be so hard on myself,
The medication I am on has many side effects. But I do my best. Stay in touch with your health care team. Don't wait . I've been hospitalized and it is just so draining.
QuGong and breathing exercises help.
I wish you well and always reach out if it becomes just that much too much
the nurse telephoned me she will call me back when she’s spoken to someone. She said that they try to avoid giving out stronger meds initially , she’s going to call with what consultant advises. It’s good I reached out and helpful to post here and get the courage to reach out 😊
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