Hi new to the group - thanks for having me!
just been diagnosed RA and waiting to see a consultant. Just a bit overwhelmed and Shocked! Really struggling with the pain at the minute and keen to see the Specialist. Just wondering if any supplements I can take? I am a nurse in the community but really struggling at the minute. Even though I am a Nurse don’t really now much about RA and it has come and a shock! Just want to get a bit of relief from this pain! Thanks Tammy
Hi Tammy, welcome to the forum, I'm sorry you've been diagnosed with RA. The NRAS website is a good place to find out more about it, as is the Versus Arthritis website too in addition to this forum which is a great help. With regard to the supplements, I would hold off on that for now until you've seen your consultant and maybe ask his/her advice on that. I've left a couple of links below. Let us know how it all goes, all the best. x
nras.org.uk/information-sup...
versusarthritis.org/about-a...
Thanks so much x
I wouldn’t take any supplements but speak to your GP about short term relief.
How were you diagnosed if you haven’t yet seen a consultant? And didn’t whoever diagnosed you offer some help? It’s common to get a course of stronger NSAIDs or steroids while you are waiting (although need to stop in good time before appt so they see you are you really are). Over the counter gels like voltarol give a few seconds of relief, plus heat and cold (wheat bags and ice), light compression gloves, that sort of thing.
Do you have an appointment date yet?
Hi thanks for that. Gp diagnosed - had blood tests as having terrible joint pain and other symptoms. He said test was positive and referred to Consultant. No date yet - been waiting 8 weeks - not sure how long it will be? Gp just gave usual pain relief but said need to wait for Consultant! Just hope it’s soon
Presumably that was the rheumatoid factor blood test? Which is not 100% reliable but your symptoms probably outweigh any blood test if you have sore, swollen joints!!
I think wait times for rheumatology are huge, there are not enough of them. So go back to your GP and insist on some help. Push, push, push! He/she is capable of prescribing and if the NHS can’t come up with an appointment for you then it is only fair that your GP helps. Don’t be reserved about this, we are often far too polite! (Which is not to say you should be rude, just politely assertive).
Thank you , I will speak to my Gp again see if they can give me anything else until I see the Consultant.
So sorry to hear that you've had to wait so long to see the consultant. I would get your GP to give the rheumatology team a nudge again. When I was waiting to get seen last year my referral wasn't received initially, and that resulted in a 2 week delay to me getting seen by the consultant.
I then had to rely on stuff like Ibuprofen and Co-codamol in the interim (Naproxen doesn't work for me) as the consultant needed to assess me first before giving me an anti-inflammatory steroid injection. I very much hope that you get seen by the consultant soon. Best of luck.
Thank you
Hi Tammy. I was diagnosed at the beginning of March and like you just wanted the pain to stop! I'd never known anything like it. My GP told me to take Ibuprofen and paracetemol. She also gave me Amitriptyline to help me sleep at night.
My GP was great and made an urgent referral and I was lucky enough to see a consultant within three weeks. He put me on steroids and hydroxychloroquine and have just recently started to decrease steroids and start on Sulfasalazine. (I couldn't be prescribed Methotrexate because of lung illness) Anyway the steroids reduced the swelling and pain after 3 days. Still had joint stiffness.
Goodness knows where the RA came from but now I've got it I'm trying to learn as much as i can about it from this forum, NRAS and Versus as well as rheumy nurses at the hospital.
I hope that you get to see a consultant soon and your pain can be controlled.
With best wishes from another newbie!
Hi thank you. I just want to get started on treatment ADAP - the pain is horrible! I will
Speak to my GP again. I hope I get an appointment spoon. Just taking the usual Paracetamol and Brufen but not doing much TBH. Glad you are on the right treatment and it’s helping. Thanks
Hiya Tammy welcome to the group, we're very supportive . I'm sorry to hear about your pain suffering. Perhaps you could ask your GP for stronger pain relief untill you are seen by the consultant? I'm on long term codeine and that helps. I sometimes add paracetamol to it when I'm having the fluey type symptoms. I hope you get some relief very soon, as I know the pain gets unbearable. Sending healing thoughts and hugs xx
Thank you
Hi, I don't have a lot to add to what has already been said, but just wanted to welcome you to the forum. Do let us know how you get on?
Thank you
Morning. For now I would recommend central heating and rest. Don’t try and over exert and don’t beat yourself up. I would also arrange an IAPTS appointment/ referral as you will need some support. This is life changing stuff. Just focus on a day at a time. Keep a symptoms/meds notebook so you have written records of everything. Very useful for appointments so you can let them know everything and good for tracking your journey.
Hot chocolate is also very useful. Take care x The forum is great for any questions, worries or concerns.
Thank you x
Welcome - although I'm sure that you'd rather not be here!
I'd advise you to keep pushing your GP; I was lucky as mine was determined to get me seen and kept badgering the Rheumatology department. Emphasize the problems you're having, particularly with reference to work. I found that everyone was very keen to enable me to continue working (the cynic in me says that's it's a box they're all required to tick!) and as my work is dependent on my hands, it did seem to get things moving quicker.
Sadly, it seems that the person who yells loudest often succeeds soonest!
Thank you
First of Tammy welcome, You will now meet some people who can support you and give you some good advice.xxxxx
Thanks so much xx
As an ex community nurse I would just say avoid having to deal with comprenssión hoisery! I found I couldnt do it. Hope you get sorted soon
Thank you
Hi Tammy,
It’s a very difficult time, having pain and getting a diagnosis of a chronic condition is life changing.
My advice is be your own advocate, do your research and become an expert on your RA. Being well informed gives you a voice in deciding on the best treatment. You will soon discover that the meds on offer work really well for some but not at all for others…. Having said that a go to, for quick relief is steroid treatments, personally, I prefer intramuscular to prednisone tablets, it works quickly and there’s no tapering, of course, this is not available to you until you see the consultant. Meantime load up with co-codamol and Ibrufen, or whatever to get some relief.
Go gently
Thank you
Hello, Tamla, and welcome to the forum. The only addition I would make to the excellent advice you have already received here, is to contact the Rheumatologist’s secretary direct. Their details should be available on the hospital website. Good luck.
Thank you - I will try.
Hi Tammy,Welcome to the madhouse! 🤪
We are a mixed bunch, with good hearts and swollen joints. We are all unique, and as such, react differently to different meds. Consequently, we might tell you about our journeys, but it may well be different to yours.
I agree with what everyone has said - good advice. Keeping a journal is something I still do - mostly because I forget which place and which side I do my 2 injections weekly - brain fog is a problem for me...but that might be my age, also. 😉
Maybe call your GP and chase your referral - ask for a copy of the letter - then, call the rheumatology team at your local hospital and ask if they have made you an appointment; hopefully, the number to call will be on the referral letter. If you haven't done so already, ask your GP to allow you to access your NHS details online - including your blood results. I find it really useful to login and keep up-to-date with letters, blood results etc. I also order my repeat meds online. Early on in my journey, my GP tried me on Naproxen and varies painkillers before my diagnosis. My diagnosis was made by a rheumatologist, not my GP. I wasn't told about the prescription prepayment option, and wasted a lot of money on buying individual prescriptions for months!
nhs.uk/nhs-services/prescri...
My GP dragged his feet, tbh, and I was so poorly, that I had to go privately for my first rheumatology visit - I found one who also did NHS and I'm still with her - she put me on her NHS list, thankfully. However, I wouldn't recommend that you fo that - it was quite expensive! Definitely call your GP today.
Good luck in your journey, and try to stay positive. Keep talking to your friends and family too.
Thank you - I have considered going private for the first consultation! It is getting me down now!
another welcome from me - not a good week to be hassling doctors, but perhaps ask for a cancellation appointment - there are guidelines about how soon you should be seen after referral. Good luck
Thank you
Hi Tammy and welcome. I have been on my RA journey for just over a year now. I assume that since your GP has diagnosed RA they have had blood test results with either anti-CCP or anti-RF positive. NICE guidelines say that if positive, your consultants appointment should be fast-tracked. nice.org.uk/guidance/ng100/...
As others have said, it is worth ensuring that the GP referral is sent as urgent. I think for mine it was still about 2-3 months for my initial consultation and in between I did go see a private consultant (the wait for that was even 6 weeks) as I could hardly move and had a lot of pain. However, in the meantime the GP did prescribe Naproxen and by the time I did see the consultant, I was able to move a little better.
So far I've tried methotrexate and sulfasalazine they've helped a bit so that I can now take walks and do a lot more. The good thing is that I've had none of the side effects. Unfortunately, finding the right meds is a slow process but my experience with the rheumatologists has been pretty good and I do trust that they will keep modifying the medication until I get the best combination.
In the meantime my go to is a heated blanket and rest when it gets too much. The heated blanket seems to sooth my joints a lot.
Hope you get your appointment soon and that your consultant/rheumatology team is as considerate as mine is.
Thank you - will give the heated blanket a go!
Welcome to the club no one wants to join. Yes do push, push and push again as telling your Doc that the pain in unbearable he should offer you something more efficient until you get your rheumatologist appointment. You have been given wise advice already and the heat pads can help relieve some of the pain. You have to rest. I was living abroad when first diagnosed and NRAS and all the lovely chat helped me considerably. Gentle reassuring Hugs
Thank you
Oh yes it does come as a shock ,you kinda go through a grief/loss process when first told.
Be best to hold off the supplements as the others have said till you see your consultant & start treatment , they can interfere with the efficacy of your meds.
Go armed with questions, as you'll know doctors diagnose & prescribe & the specialist nurse has your care plan so will be the one to answer questions & guide you through.
Pain wise it's awful we all feel for you, are you able to ask GP for summat like co-codamol , till you sort your treatment? Also if your appt with the consultant is a way off can they let you have steroids? Course not medically qualified for all this but these are options offered.
Sorry you have to join us, but big welcome 🤗
Thank you
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