new guy

Hi all,just been diagnosed with RA a few days ago.I havent got an appointment at the RA clinic untill the end of March.Luckily i have Bupa cover through my wifes work but that hasnt kicked in yet.I have been given no medication from the doctors and very little help or advice to be honest.Any tips in dealing with this would be greatMy pain is in my jaw,shoulders knees and hands mainly.Thanks for any help

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  • Hello and welcome to this site. I'm so sorry you have to join us, but you will find that we are a caring bunch of people.

    I would suggest you ask your doctor for a steroid shot to make you feel comfortable while you wait for your appointment.

  • Thanks,i will ask when the Docs open again.I was very surprised at how little help or advice was offered.πŸ‘

  • Yes, I was shocked when I was diagnosed too. My gp told me what I had and sent me home. I then sat around for five months in pain waiting for my rheumy appointment. So wrong to do to a newly diagnosed person.

    Are you located in the States? I assume you are because of Bupa.

  • I am in the UK πŸ‘πŸ˜†

  • Sorry you have to join the club, but welcome!

    I'm not surprised you haven't been offered much help or advice (sadly!). I was in agony for well over a year before I was listened to.

    Once you do finally see rheumatology it's not quite so bad. However, there's an awful lot of faffing about with various meds. Be prepared for that.

  • Hi

    My gp told me I almost certainly had RA and submitted an "urgent" referral to rhuemetology - it took just about a full year to be seen ! My experience is that although gp told me thus is what I had , one cannot be diagnosed as such by the go, it had to come from rhuemetology? It is only then that one then receives appropriate medications. However, during the wait, I wasn't left in pain as was prescribed pain killers ( tramadol), anti inflammatory and given steroids to hold me until I saw rhuemetologist. Ask your gp for these meds if needed.

    Sorry to hear you've been left out on a limb, so to speak.

    Hope this helps.

  • Interesting the differences in health care systems. My GP was the one that actually diagnosed me and sent me to the rheumatologist here in the states. I was told that here, the rheumy won't see you unless you actually have RD. you can't even make an appointment - the GPs office does that for you...

  • It's the same where I live. (Canada)

  • Before I got to RA clinic my GP prescribed steroid tablets a low dose but even that helped a tiny bit and codeine and paracetamol four hourly Nothing works immediatly they all take time to get into your system

  • Welcome! It's great here - the support and advice has been invaluable to me.

    My GP was great and got me a fairly quick referral to the Rheumy team. In the meantime she started me in Naproxen (anti inflammatory plus Omeprazol to protect my tum) and co-codamol (pain killer) four times a day.

    It's a long journey finding the right cocktail of drugs, but it does get much much better.

    After three and a half years I am enjoying my second spell of remission - and boy does it feel good πŸ˜€

    This is a great place to learn more, and the best part is you never need to feel you are alone fighting this poopy condition.

  • All of the above i agree with. If you want help tell your dr you can't cope with nthe pain and what can he do to help. Also have a go at the hospital to get a urgent refferal.xxxxxx

  • Thanks for all of the replys and help,appreciated.πŸ‘πŸ‘πŸ‘

  • A lot of GPs know very little about these diseases, so tend to wait until the rheumy tells them what to do. Jem95 has it right, GP's can't confirm a diagnosis of RA so can't prescribe the full range of drugs until they have confirmation from a rheumatologist. But they can prescribe more effective anti-inflammatoires than ibuprofen (with a stomach protector) and pain relief. If things are really bad do ask about steroids too. Don't forget that simple things like heat packs and ice packs can really help hot and painful joints.

    In the meantime keep a diary of symptoms and take photos of swollen joints just in case they all calm down on the day of the appointment. It's also worth thinking about what you can do to help yourself. So if you smoke, stop. It really makes RA worse. Think about your diet and whether it can be improved - for many people that can ease symptoms. For me it doesn't but I do believe my diet has helped me tolerate the drugs much better. Try balance your life so you stay active, but also get proper rest.

    It's a lot to think about, but also don't get too despondent as despite what your read on Internet the majority of us respond well to the drugs and then can live a pretty normal life.

  • I'm exceedingly lucky with my GP - she is blooming great. Her mother has RA so she is up to speed on it plus is interested in treatments etc. Nothing is too much trouble and I always feel positive after I've seen her / spoken with her. I'm a lucky girl (well slightly older woman!).

  • Hi and welcome to this great site, I hope you manage to get an earlier appointment to get you diagnosis confirmed and to get started on treatment.

    I must have been lucky ( if you can call it that!) in that I got an appointment within 6 weeks of it all kicking off. My GP gave me anti- inflammatories and I used paracetamol as well to get me through the wait, I also used ice and heat. I didn't have steroid as my appointment was only a few weeks away and we wanted the rheumatologist to see how things really were ( pretty bad πŸ˜₯) and steroids tend to mask the inflammation. If you can't get an earlier appointment then it might be worth asking for a steroid jab to calm things down while you wait......it will have worn off by your rheumy appt so won't mask things. Certainly I would ask for anti inflammatories from your GP to help you right now.

    If it were me, and I couldn't get the private appt sorted, I would be phoning the hospital and asking for an earlier appointment, maybe a cancellation?

  • If you have bupa health insurance you should be able to see a rheumy within a week, on your private cover. When I was first referred to a rheumy I used my private health insurance to get in to see them alot quicker than the 16 week wait they told me would happen on the NHS... I had an appt within less than a week (in fact the same rheumatologist that covers my area on the NHS) ...I ended up transferring back to him on the NHS choose and book system once I felt that there was no longer any urgency

  • Wow that's a long time! I'm in the US and it seems that appointment times in the U.K. take forever!

    Try some natural supplements that reduce inflammation like turmeric, zinc, mushrooms, cherries, etc. Google that and you'll find a list of things that can help. I will pretty much try anything to see if it helps.

    I can only imagine what you're feeling like because I was there too. I recall my pain/flares so excruciating that I didn't think any meds would make me feel any better. That was how I felt then but feel differently now. I'm managing and I have my issues but overall soooo much better. I was diagnosed 2 1/12 years ago. I've been through some different meds finding the right one that worked for me.

    I too found this website and it was so helpful in helping me to learn what people with RA go through. The best info is from people that have the same thing.

    Good luck and hopefully you can at least get some relief soon. By the way the jaw pain is the absolute worse pain of it all. Be strong and this will pass. :-)

  • Hi there my friend. Im real sorry your here but your asking the right questions, i would push bupa as hard as you can to get a condultant appointment but i would also go back to your gp and question re dmards, steroids, anti inflammitories and pain relief. Early intervention has been shown to make a huge difference in the prognosis of this disease. Of all the hundreds of things that may or may not help you in the future joining this forum will prove to be one of your best decisions, the people here are kind informative and supportive, we have all asked for help from others and have given help to others, no question you could ask is stupid. New members here have posted questions i thought were obvious, only to find that there were better solutions that simply never occured to me, because i never asked myself that question.

    I hope for good results for you in the future, meanwhile the best you can do to help yourself is to try and start to find a holistic life balance that works for you, and enables you to manage as time goes by. Those are easy words for me to type and a little less easy for you to read, but also the best long term advice that i can offer.

    Blessings, Leon.

  • just read your post and welcome to the site there is allways someone on here that can put u in the right direction really a lovely crowd of people u came to the right place its caring and supportive i really hope u get sorted out soon i a gree with suzannedale ask doc for a steroid shot march is a long time to wait best of luck keep posted x

  • Wow,didnt expect all of this.Thanks to everyone for replying to me.πŸ‘πŸ˜†πŸ‘

  • Hi and welcome, I have had ra for5 years but only recently joined this sight. Fantastic group of people , they pulled me out of a very deep hole indeed. I wish you all the best with your treatment x

  • It would be a good idea to look at the NRAS website as well. It would give you an idea of what to expect from a possible diagnosis and do a search for first appointment on here - lots of previous posts!

    I know I asked for a private appointment initially (and paid for it) partly because I thought I would get more time to discuss things with the consultant. It still took six weeks because there are so few rheumatologists. And I didn't really have any more time with him than I do seeing him on the NHS (which I transferred to)! But consultants do vary - so worth asking around for recommendations.

  • Once RA is confirmed, ask for biological- treatment. They are very expensive but are first-line treatment nowadays. You should get them on the NHS so might not need BUPA? Good luck.

  • That's not allowed in England. You have to try the standard drugs first - even if you have private medical cover (unless maybe you're the queen).

  • sorry for your pain but welcome. Alternating heat and cold packs may help you like many of us but not all - it can be trial and error unfortunately. compression gloves eg isotoner help me type, grip, hold steering wheel etc but unlikely I'll ever manage screwcaps etc but this is minor in the scheme of things. When drugs prescribed be prepared for them to take time or prove unsuitable ... but there are always more.. Ankle boots and v. cheap thai boxer ankle supports help me and getting an automatic car was pure magic - still is. When in doubt or bad pain - feet up! 74 last week so cd be yr mother so a different perspective on life but swimming and sunshine are wonderful treats after diagnosis abt 18 months ago. Good luck xx

  • I had bupa when I first got the symptoms several years ago. My GP referred me to rheumy, neurology and osteo consultant privately. So I got MRI, x-rays, blood tests etc within about 5 weeks. And got diagnosis of RA. So the rheumy there gave me a steroid shot to ease things and started the drug treatment. So it was all sorted within about 6-8 week. So I'm surprised the GP has said it's RA as someone here said, most GPs have little knowledge of RA. And have they done any blood tests etc? Anyway. Good luck and all I can suggest is get back to the GP waving your bupa (get out of pain free card😊) well, your wife pays for it. And get sorted. Good luck.

  • Bupa is great for the initial consultation but then you will have to go back to the NHS for medication as Bupa does not pay for medication or once an illness is considered as chronic. Clemmie

  • Yes, I should have said that. Lol. I switched to NHS once diagnosis etc was completed. And all my mess were sent to my GP for NHS scrips. Then I switched over to NHS hospital regular monitoring. But as it was the same consultant there, as it often is as the do some private, some NHS, it all worked well πŸ˜ƒ

  • All my mess? Damn prescriptive text😑. That should have read 'scrips', meaning prescriptions.

  • I was diagnosed with RA in January. Didn't see Rheumatology until end of June. I am on mTX nothing else!!! only med my body can cope with!!! Best of luck and l hope it goes well for you

  • Hi Ruskytron

    I'm glad your GP has referred you. The GP's here in the UK can only suspect what you are suffering from rather than diagnose as the diagnosis itself can be so tricky despite results of blood tests.

    In fact diagnosis often change even years into treatment. All this will become second nature to you, it really is an education in itself having inflammatory arthritis of what ever type.

    If you are suffering hugely and have three months to wait ( a bit like I did, I too had it in my jaw, base of my skull and knees and feet and every joint in my hands, wrists and fingers)

    My GP who is quite young and up to date prescribed me oral steroids to zap the inflammation and physiotherapy to help me walk again. It was a very large daily dose which did the job and then we planned a tapering schedule to allow me to flare again just before the first Rheumatologists appointment so my symptoms wouldn't be masked.

    The Rheumy was very impressed with my GP, I know some people aren't so lucky. She personally commended her strategy and put me on a holding dose of oral steroids tapering very slowly while the DMARDS kicked in.

    From Onset of symptoms to getting Biologics was a six month journey for me of rotten reactions to the first line drugs and being unable to work.

    I was sick from work for approximately 10-11 months but am now back in a very demanding physical job with unsocial hours. I inject myself with Etanercept every Wednesday and take stomach protectors and Hydroxychloroquine twice a day. I was on Naproxen twice daily too but my stomach started to play up and I was scared of getting an ulcer to add to my problems. I take Tramadol for pain when it's really bad but paracetamol otherwise.

    So from being totally disabled and incapacitated I am now about 85% OK some days are still better than others and of course the future is unknown but what I am trying to say is that it's a daunting struggle at first but read a lot, listen to others experiences and become your own expert and don't stand for poor care if you feel you are being ignored or your treatment isn't as you hope.

    Use the Arthritis..o.uk website and NRAS website for spot on information and come on here anytime to ask anything however small as the wealth of information and kindness shared and shown to all is a shining example that the Internet doesn't have to be uncaring and full of trolls.

    You won't find that here.

    All the best to you and I hope that soon you are pain free and on the road to managing your symptoms.

    Mx

  • ThankyouπŸ‘πŸ‘πŸ‘

  • Afternoon I'm sorry to hear you in pain I was like that at first all in my shoulder and knees . I think it was about a month later I started drugs as I really didn't want to quiet tearful thinking that was the end of the road 4 me .but I will say they will make you feel much better in the long run and try using food change I feel so much better when I eat healthy . I see and feel like rubbish after eating a takeout so I tend to go for ages without that . I hope you get on ok .

  • Hope everyone had a lovely Christmas day and was spoilt!

  • Does anyone know how to join a ra group or to try and start one as whenever I ask anyone in the medical world they have no idea and say look online ..."really" I think most of the medical profession should do more training on ra these days

  • Yep look online, very helpful of them ..... the NRAS website has their groups here nras.org.uk/groups, just tap on your area & see if there's one near to where you live. πŸ™‚

  • Thankyou for reply ...Yes I did that but it still at least 8 miles away I really wanted one really near me .

  • I have a choice of 2 fortunately, one is literally 5 minutes away from home & the other 20 miles away, guess which I prefer! Unfortunately I would think if there is already one 8 miles from you the chances to start a new group would be slim, though you could always contact NRAS & ask the question. Is there anyone who would be good enough to take you if travelling's a problem?

  • I'm still ok to drive at mo but Yeh I just might contact nras thanks

  • No probs.

  • Took me a while to come to terms with RA and like you I had trouble eating with the pain in my Jaw. With pain in my wrists, Knees and fingers mainly, although also spread to my shoulders and feet. Good news is that with the right medication you can live a pain free and do all the things you used to before RA set in. I was diagnosed in 2009 and one of the "priviledged" 4% of male sufferers (most are women) but with Humiria and a small dose of methotrexate I do not suffer any pain and am back doing DIY, football and golf. The future is so much better than I thought in 2009.

  • Thanks,it helps to hear this Richard.πŸ‘

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