Help - new here

H i i am new. Sorry for note form, not mean to be curt but hurts to type. I was told by my gp today he thinks I have ra. Problems with hands swelling, stiffness etc since Oct and intermittently before that. Both ankles, elbows and shoulders since Nov. In last 3 weeks spread to knees and hips, problems walking and with stairs. Toes very painful and swollen especially tonight. Today gp started me on prednisolone 30mg a day to try to reduce pain and swelling. Naproxen not helping and I have stomach condition also. Been to and fro to gp since Sept but only referred to rheumatologist 23 Dec. Now seems referral not yet typed due to Christmas so not gone yet. So no progress towards clear diagnosis.

Very worried and frustrated. Was tested for RA last year while living abroad as had similar but less serious issue with hands a year ago. Inconclusive and told to wait and see. It never fully resolved as had hand pain to point that we bought an automatic car this Aug.

I have some questions please and respect your far greater experience and knowledge.

1. Is it worth paying to get earlier referral? Realise controversial but am getting desperate and worried about permanent joint damage. Lost hand functions and grip early Nov.

2. When get to hospital appointment, will being on prednisolone mask condition? What should I do about this?

3 is there anything I can do to get gp to grasp urgency? Pointed out NICE standards today re urgent referral, but still awaiting clarity about whether referral discussed on 23 Dec is in a typing queue somewhere!!! Gp today wouldn't do new letter as i saw his colleague in Dec and wants to wait for her return from holiday to find out situation.

4. How long is wait likely to be? It is Portsmouth NHS trust. Is it different privately?

5. Any help to control worry would be welcome. Husband and kids helping me over Christmas but will be alone soon and not sure how will !manage. Eg I can't do lock on front door, open dishwasher or food containers. Have job interview next week and as so preoccupied, tired, not sure how will manage. Have to do case study there but can't hold pen. Unsure if steroid will affect performance.

Hope to hear from you, and thanks.

40 Replies

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  • Hi new, would you mind if I called you Blighty? , welcome to my world and the group

    Philip

  • Thank you and yes you can call me that ☺

  • Did you know you can type by talking into your iPad, your PC or mobile phone, just thinking it would be of help when you are using the your fingers to type

  • Yes, need to figure out how

  • Hello, sorry you seem to be in the club.

    I don't know about paying privately but can answer about the steroids. Yes the steroids will mask the swelling and pain that you are in. But, without them you will be in pain and the swelling may be causing damage. The Rheummy will know that you are on steroids, especially if you tell him and the dosage.

    Keep a diary of your symptoms, take photos of swelling etc. All this will help him (not being sexist, could be a her) make a diagnosis. Get from your GP the blood tests results that you have done and become a frequent phoner to get that letter sent.

    I have a personal dislike to Portsmouth as my dad died in there. I don't know about any other aspect of the hospital.

    Your grip will improve on the steroids and make sure that they have put you on ad-cal.

    I know how you feel regarding housework, but if it doesn't get done, it doesn't get done. Things will improve slowly. There is no magic fix for this horridious disease.

    Since diagnosis a year ago, I have changed the kettle for a water dispenser, microwave for one with a nice big handle. Mum bought an electric potato peeler for Christmas. If you feel that you need help ask for it. RA is a multidisciplinary disease, there will be physio, counseling, podiatry and occupational therapists available, if you ask for it.

    The worse side effect from steroids for me is sleep problems and the urge to raid the fridge.

    I hope that your interview goes well. Hopefully there will be enough time to rest as you are writing. Also there are pens that have chunky grips, can you get hold of some, they may help.

    Should you go to any mobility shop, remember you don't have to pay VAT. So declare RA as a disability.

    I am sending hugs.

    Jacqui

  • Thank you, v kind. Sorry about dad. Understand as mine also died in a hospital.

    What mean ' make sure put u on Ad cal? What's that?

  • Long term steroids attack the bones. Ad-cal is vitamin D and calcium to give them some protection.

    Jacqui

  • Poor you this is a hugely stressful time for you. However I can say that things will improve and eventually you will feel there is a plan and that you know what is going on. Not everything will feel so bewildering, despite the bumpy road we are on with these conditions.

    When "it" hit me nearly a year ago it was so obvious to me that I urgently needed some kind of treatment that I paid to see a private rheumatologist. He put me on prednisolone just like your go has done for you.

    To be honest that was all I needed to see me through to the NHS appointment and it will probably be the same for you.

    You are actually quite lucky that your gp has stuck you on the pred - they are often very wary of anything more than a short steroid burst.

    Of course you must do what works for you but I am not sure private health care is very good for long term conditions like RA.

    It is interesting that you are concerned about the steroids masking the condition.

    I took photos of my swollen hands and the letter from the private guy who talked about me having "florid synovitis" etc.

    Even so the registrar wanted to see for herself and told me to reduce the steroids. In the end I had to become very ill all over again before she started me on a DMARD, which looking back feels wrong and I wish I hadn't been put through it. I think it was because they won't diagnose until they have seen theninflammation on an ultra sound.

    If you decide to go private make sure you are really clear what your health insurance will and won't cover.

    You will probably feel much better by next week and your job interview as steroids work pretty quick ( sadly I appear to be stuck on them at the moment - that's the down side)

    Try not to worry too much- I worried myself stupid and still do but in my more sane moments I realise that I am still here and functioning and have probably been just as disabled by the fear and upset!

    Hope the helps a tiny bit

    Bon

    X

  • Thanks v much. No health insurance - just considering paying to get first appointment quicker. Someone suggested to me on nras line. Realize this upsets some and not everyone can afford. But want to limit hand damage in particular as long running.

    Gp only given short steroid burst, 5-10 days.

    I do have films of hands at worst - knuckles like toblerone triangles

  • Hi I paid for a consultation for my lady,it helped us her illness isn't ra,or any thing related. The reason I paid was to get her into the system quickly, and with less stressing. Yesit worked and I would do it again if it helps her. Unfortunately she is still seriously disabled and I've had to involved our mp to move things,but that's another time and place.

    As for yourself please see how long it's is before your appointment and work out if its worth the wait. You have come to the right place for information and help. This a good site and it has some brilliant members with sound advice. Steroids can and do help,along with other meds. Its about quality of life. Welcome aboard. Craig

  • Sounds like typical RA pains symptons mot of us have gone through still do occasionally six years agoI was very bad for eight weeks before actually getting one of the doctor s from our local practice (saw four different ones in eight weeks to say what I had and get me to hospital to RA clinic I couldn't use any of my limbs at the time pain swelling was extreme as soon as consultant saw how bad I was he admitted to the ward once they'd done all tests over a few days I went onto sulfasalazine Worked great for me until last year and huge flair up again this time it's still taking longer to get me sorted out after three visits with consultant .started methotrexate last evening so will see how I go it takes time I'm afraid to get us sorted out but they usually in end so try stay positive it's hard but you can do it you've no choice good luck

  • PS how long did you wait between private appointment and NHS? Can I ask what area you are in? We were overseas till June, so out of touch with way NHS works now.

  • PS again ! Yes fear/ stress is bad and I think contributing to major flare today as since gp actually voiced what I have been thinking - that it's ra - pain has got worse through day. Felt until then that it couldn't really be real and would go away on its own.

    One of my worries is my kids as I can see in their behaviour and faces how worried they are - and I dont like them being little carers for me - although am super proud of how they have risen to the situation - and how caring

  • Hi Blighty

    I am sorry to hear that you are in such pain and stuck at the moment in a difficult place. I have to say that if you feel going private initially may help, then that's what you should do. A gp can give you meds to tide you over but it may be that seeing a rheumatologist sinner rather than later may be more appropriate as they'll have a greater understanding of what may hold you best / slow potential damage in the interim?

    As for the children, that is difficult, isn't it? I have four of my own and at my worst over a year ago, they were so worried and bravely tried to hide it! I had so much surgery last year that I found the best way was to be appropriately open and honest with them and then helping me into a game - cooking, cleaning etc. A lot of distraction worked too!!

    At the end of the day, we can only ever do our best and now is not the time to beat yourself up about that which is outwith your control at the minute .

    Best of luck with whatever decision you reach and I wish you well For the journey ahead.

    Marie

  • Just thought look on NRAS website at the leaflets, they may give you some ideas of getting through the next few days. Also give them a ring, they can help.

    Jacqui

  • Thanks I did, they suggested try private option given delay, they not sure re steroid question

  • Poor you, I feel for you as I was in exactly your position a couple of years ago. I did end up paying to have a private consultation with a rheumatologist to get an initial diagnosis, as my referral from the GP was getting nowhere. I did some research to find a rheumatologist & found someone who worked privately & at a near(ish) NHS hospital, so I got my GP to make my referral to her at that hospital instead of my original referral. There have been a few minor hiccups along the way with the hospital being in a different county to my GP, but things have worked out well really. Thankfully I have a very supportive, helpful husband who helped to get things sorted in the early stages, as I was not really in any fit state to be very pro active at the time. We did feel that we had to chase things up a lot at the beginning.

    Good luck with being seen by someone

  • Hi Blighty

    I just wanted to add that Portsmouth NHS Trust are very good with Rheumatology and osteoporosis so you will be in good hands once you get seen by a rheumatologist there. They seem very proactive - I attend their Love Your Bones conferences which they hold a couple of times a year. I don't live in the Portsmouth area so am not a patient there but I do find the conferences very informative.

    Sorry you hurt so much. Take care

  • Yes it is worth getting a private consultation,i did,but i had a appt with same rheumy so i went private to find out what was wrong. He thought it was ra,but he would see me in the nhs hospital appt comes round,that was 14yrs ago so my memory is not so good these days,but it is a start for you and it will give you some sort of answers. I would also reccomend you speak to the practice manager at your surgery and raise your concerns with them and see what happens as it speeds things up darling and ask for a emergancy appt as well.xxxx

  • Let me just tell you that I am 43 years old, I finally got officially diagnosed at 35. If I had not gotten to my doctor when I did, I'd be in a wheelchair. He told me that if I listen to him and my arthritis is handled right, I will be okay. It's very important that you get that referral asap! I was in so much pain that I showed up at my doctors office At 4am and told him If he didn't do something, I was going to blow my head off! This disease causes not only severe pain but it causes depression and that only makes it worse. Prednisone does not work! It will not stop the progression and it will not stop the bone pain. You need an anti-inflammatory and they should be taken with Prevacid to protect your stomach. I am on Methotrexate which stops stiffness and slows the progression down. I also have pain medicine. I try to stay active and just know that losing even 5 pounds will help your knees. My doctor told me to stay off the stairs. I'm not allowed to live in a home with stairs either. If I fall I could crumble! Get that referral! Call them tomorrow and get it! Don't allow anyone to just throw a prescription pad at you either. Radiographs head to toe, bone scans and density tests as well as extensive blood work needs to be done. I see the number 1 Rheumatologist in the State of Texas and I'm walking because of him.

  • Hiya & welcome Melslex. Just a heads up Mel, the poster BlightyFiveStar is in the UK. Whilst we share the same disease & some of your information is helpful our health system is quite different to the States. For instance bone scans or DEXA scans aren't generally included in initial diagnosis testing unless there's a known diagnosis of osteopenia or osteoporosis. Thought it best you knew for future advice, NRAS who run this site is a UK charity (a précis of NRAS is in 'About' on the top bar). We welcome members from all over the world, after all RD isn't country specific, but in the main members are based in the UK. It makes interesting reading learning about how RD is treated elsewhere in the world & they say knowledge is power!

    I hope you enjoy being here. 🙂

  • Hello there I am so sorry that you are feeling so ill, I was like you before I was diagnosed that was back in 1999 so a long while ago. I did ask my GP for a private appointment it was the best money I spent the rheumatologist was so thorough and said she would arrange for any further treatment and tests to be done via the NHS. Turned out my ESR had gone through the roof and I was positive for the Rheumatoid Factor so diagnosed with RA. You would have to ask your GP to refer you the Rheumatologist I saw was the same one that treated me in the NHS but of course this was 18 years ago and a lot changes. When I was so bad all those years ago my children were young and it was such a struggle to keep everything going, plus the guilt I felt for letting them done and causing them worry it was very stressful so totally understand how you feel. They are grown up now obviously and are so understanding. Good luck with everything

  • Hello Blighty, welcome to the group. I don't post much but there's a lot of help and advice on here.

    If I were you I would pay for a private referral. Try to get it with the best Rheumy you can. I see the same one privately and through the NHS.

    Where I am the wait time is awful (think years not months) so the only alternative is private. You may possibly still need the referral letter from the GP though....

    Regardless, research it today and make the appointment.

    All the best xx

  • IT is definitely worth paying to see a rheumatologist privately......even if only to be prescribed a Dmard (disease modifying anti rheumatic drug) & to get off prednisolone.. Once you have a diagnosis a treatment regime can be worked out & you can then return to seeing someone on the NHS.

    Don't worry about it being controversial ....it's your joints & your pain....so if you can afford it ask for a referral ASAP. You will probably get an appointment within 10days. ....it will be well worth it...I saw my original Rheumy privately when I had all the symptoms you describe ...that was in 1999 & although I have had my ups & downs I firmly believe I would be much worse off without that original diagnosis.

    Unfortunately referral on the NHS is slow ..but RA doesn't know that ...it gallops on regardless.

    I wish you all the best in starting a treatment that will help.

  • You've had lots of good advice, and just a couple of things to add. First off, while all the literature emphasises that the earlier you are referred the better the outcomes, much of that is about the ease of controlling the disease. It isn't automatic that you will get permanent damage as that can take a long time to happen. It obviously varies according to how erosive your personal disease is, but the degree of pain and swelling aren't directly related.

    By the time I was diagnosed I could hardly walk, couldn't use my hands, struggled to wash, dress, eat etc etc. and was in so much pain that had difficulty sleeping. From neck to toes every joint was inflamed, and painful. I was measuring myself up for a wheelchair, But now I'm absolutely fine. I have a tiny bit of damage in my toes, but doesn't stop me walking the dog 5km every day. When my first rheumy patted me on the shoulder (thanks, ouch!) and told me I'd be fine I just really didn't believe her.....

    Re masking the symptoms with steroids and/or anti-inflammatories. Yes they do, and many rheumies do like to see & feel the inflammation themselves. Which although it sounds inhuman I do understand as they do need to be sure before prescribing these strong drugs. As other have said, keep a good record and decide yourself once you have an appointment date. You may well be already starting to feel reasonable again with the steroids..... and don't worry either about long term effects of steroids, or having to protect your bones using ad-cal as that refers to using them for over 3 months. A short burst will be fine apart from maybe making you feel more emotional.

    It is a truly horrible time at the beginning. I still shudder when I remember it, so I feel for you. It's painful and scary. But hang on to the fact that for most us it's controllable. This site isn't entirely representative as it's used more by people with the most difficult disease, and with problems. People who are doing fine don't post much as nothing to say apart from I'm fine...

  • Love your reply. When I was diagnosed October last year, reading some of the forums made me even more depressed. I try to remain upbeat and inspirational posts like yours really help those recently diagnosed knowing today there is hope.

  • Hi there, i really feel for you and im so sorry you joined us but im glad you found this site as the people here are kind and helpful. People have sympathised with me because i am on my own but i disagree with them, i believe you ladies with families have the toughest jobs, i get on with my day as best i can and what cant be done is left undone and i have no guilt trip about anyone else having to look after me. Whilst waiting for your consultant appointment ask your gp if they will consider prescribing you an anti inflammatory to help your pain and slow things up along with the steroids you have been given, but there are meds that can only be prescribed when you have a diagnosis. The agony of fast onset RA can be shocking and unbelievable for most people, when i found i couldnt get things out of my pocket or turn my front door key others didnt believe me, but things will improve some when the right meds balance is found for you. Anything you want to ask here is absolutely fine so ask it, someone will have experience similar to yours and will have worn your shoes when dealing with it. Every one of us thought we couldnt cope, but we found ways because we had to. Im from the generation when Thalidomide was an issue, i was lucky that my mother never took it, but i had a friend who grew up with no arms, years ago when his girlfriend became pregnant they wondered how they would cope, shortly after the birth she crumbled and left him, he raised that little girl from 6 weeks entirely on his own and he found ways to do things because he had to, someone asked him his most difficult day?, he replied "that was her university graduation, i couldnt wipe my eyes". You will get through and find ways or compromise simply because you have to. Blessings.

  • Hello. Sorry to hear all your problems I just wanted to say I went privately for my diagnosis then transferred to the NHS with the same consultant. Your usually waiting at least couple months for nhs appointments in Northampton. Hope you get sorted.

  • Hello and welcome!

    Sorry you are in so much pain. As far as the referral wait, I think that's not too bad. Your GP seems to be on top of things and has at least given you pain relief.

    My GP was a nightmare. I was in agony for well over a year, and because bloods came back RA negative, she refused to refer me! This despite all my toenails dropping off, and my inability to walk, or get out of a chair! I was eventually referred when my inflammatory markers shot up. I still didn't see a rheumatologist for a further six months. My GP refused to give me steroids, so I was on oromorph, which was useless.

    Referral and treatment seems to be variable. I've had various symptoms for years. Unless something Actually drops off, my GP couldn't care less!

    When I did eventually see a rheumatologist, she initially refused to give me steroids until all the x-rays and bloods had come back. I don't mind telling you that I wept like a baby. After two weeks of hearing nothing from them I contacted rheumatologist and demanded that I have a steroid shot asap. I couldn't even walk my dog! She did agree, but said it might screw results. It made no difference because I didn't get a follow up for three months, and the steroid had worn off!

    Hopefully your steroids will kick in soon And you will feel a bit better.

  • That sounds just awful Hector23. It makes me realise Im lucky here in East Sussex. And as a nurse myself, albeit in mental health, Im pretty assertive when it comes to negotiating treatment. I saw a rheumatologist within 3 months of referral and was prescribed steroids. The locum GP was pretty useless and gave me antibiotics for an infection. I insisted on blood tests and luckily I had all my inflammatory markers raised.

    The locum rheumatologist was pretty rubbish but the specialist nurse I saw 3 months later has been brilliant

  • Hi ya, hope after reading these posts you are feeling supported, this group is fantastic and caring. everyone has said the things I would say, but just a thought: once typed your letter could be emailed or faxed as urgent? Once in the hands of rheumatology they will decide how urgent it is. Give the Gp's a ring and ask since you have had to wait for it to be marked urgent. I've been diagnosed 6 years now and on MTX 20mg injections but I still have times when i need anti inflammatory and other pain relief medication just to get through the day.

    Good Luck and hope you hear something positive soon.

    Carol

  • Hi and welcome. I too considered going private for first appointment last year but in the end my constant communication with the GP surgery plus a sky high inflammation levels moved it to I week, rather than a month plus, away so didn't need too. I was back on steroids at rheum app as well but rheum knew this and looked at my history plus high inflammation levels, seropositive blood tests and X Ray evidence to make a RA diagnosis. Put me straight on hydrochloriquine and Mtx and reduced steroids gradually. Now a year later am doing well - little pain atm and few side effects from medication. Best of luck.

  • So sorry to hear about your pain and having to wait. This site is great as long as you bear in mind that everyone is different and what works for one might not for another. I've used private referrals a couple of times over the past 15 years of having RA and they've been useful. You might get recommendations from people on this forum for rheumys in your area (by private message). I got a referral through my GP to an alternative rheumy when I found the original one too hasty.

    My Gp refers to steroids like pred as sticking plaster. They also make my blood sugar levels rocket...

    the only other thing I'd say, from experience, is that when and if the Drs want to change Meds it's a good idea to make changes gradually and one at a time.

    I hope you can find decent support

  • Thank you everyone for the replies which are so helpful. Feel less alone now and a bit more informed. Bad night as hips unbelievably painful and heart racing, presume from pred, so couldn't sleep. Hips, toes knees bit better today but hands the same. Feel nauseous, but reassured by helpful info and posts. Going to research how to identify someone private and NHS and speak about referral when GP responsible for it calls me tomorrow

  • In addition to all the helpful advice posted by others, just a little practical suggestion - I find that wearing elastic wrist supports or compression gloves (depending on which joints are more affected at the time) enables me to do things I can't do without them. They also protect the tender joints from knocks.

    Good luck with referral - hopefully already sent.

  • thank you :-) Yes been wearing them since pain got unbearable in Nov

  • Hi and welcome Blighty , this site is a godsend with sound advice as we are all in the same boat some worse than others, I think it depends in what part off the uk you stay in regarding waiting time .I was very lucky regarding waiting time as I was referred by my gp and only had to wait a couple off weeks and seen my rheumatologist that was in 2014 I'm now on a Bisomar and mtx having failed 3 dmards but the first couple off years were hell and now I'm a lot better than I was and have adapted and learned to look after my joints better so patience is the name off the game but things will get better

  • I looked at going private when my local hospital failed to spot the signs of RA. My GP threw her hands in the air with anger and said I am going to refer you to a teaching hospital. I was seen by the head of dept at my nearest teaching hospital (which is outside my area) and within an hour the consultant was 99% sure of what I had.

    I don't have the RA markers so that is where being seen by a highly experienced Rheumatologist worked for me.

  • Welcome to you BFS (hope you don't mind?). I'm late to your post, you've received lots of good advice, little to add really. I was also living abroad until 4 years ago, 11 years we were in the Med & it's where I received my diagnosis back in 2008, seropositive. I was more fortunate & diagnosed a little over a fortnight after my GP tested me & referred me. Meanwhile she prescribed me pain relief & an NSAIDS but advised I stopped both a few days before my appointment at the Diagnostic Clinic. I know that it's oral steroids you've been prescribed which is a little different, though a short course won't confuse things as they'll be out of your system quickly, but it's important your Rheumy, private or NHS, sees you unmedicated initially just in case you take any otc pain relief or anti inflammatory. He needs to take his baseline tests & any imaging done without anything influencing your normal state in order to diagnose, work out your treatment plan & doses.

    If you're finding it difficult to find the right words to explain to your children do you think a book may help? It can be unsettling for them not really knowing why mummy is poorly, thinking of this one in particular medikidz.com/gb-en/shop/med... It's also available on Amazon if you prefer.

    I hope it helps being here & I hope you're seen, whichever way soon.

  • Hi Blightyfivestar. I'm so sorry you're going through so much while in pain as well. Hugs!

    Have you ever heard of dragon dictation? It types spoken words for you & actually learns your speech patterns, voice & accent. This may be a help to you since writing is so painful.

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