My GP thinks I have RA but, because I live in Orkney (islands off Scotland), it's taking an age to diagnose and see a specialist - 2 months so far. What I really want to know is does anyone else get this deep heat sensation in limbs and joints? Mine started, mainly in wrists and arms, a year ago before any joint pain and I thought it must be that I was having hot flushes with faulty wiring - because I was in last fling of a very straightforward menopause. But now I seem to get them all the time and wonder if this could be inflamation - although rarely visible but often linked to joint pain and swelling now. This heat thing feels like my feet and wrists, fingers and sometimes other parts have been dunked in boiling water - but deep inside the affected part? Starting to think it's just me because I don't see this mentioned as an RA symptom?!
Not yet formally diagnosed - very new to RA - but doe... - NRAS
Not yet formally diagnosed - very new to RA - but does Kenalog 80mg mask symptoms when I get to see the consultant finally in 6 weeks time?
Hi Tilda
Welcome to NRAS and Health Unlocked!
The main early symptoms of RA are morning stiffness lasting 30 minutes or more, persistent swelling of one or more joints (often in the hands or feet) and pain when the joints are squeezed. Have a look at the S Factor poster nras.org.uk/about_rheumatoi...
Inflammation in itself causes heat and can indeed make you feel as though you are burning up. It is more usually restricted to the joint areas as this is where the disease lives. Rheumatoid Disease attacks the tissue within the joint,the synovium, leaving it painful and inflamed. You would not normally feel symptoms in the arms or legs except around the joint areas. Initially RA has a tendency to affect the smaller joints of the hands and feet.
Kenalog is a steroid which treats the symptoms of the RA. It reduces the inflammation in the joints and therefore associated pain. So yes, it is a drug that will mask the symptoms. However when you get your appointment you will undergo a series of blood tests which will look for evidence of the disease in your body. The tests may include anti-CCP (you should ask for this test to be done if it isn't offered as it will determine whether you have the antibodies for RA and is the only specific test that will do this), Rheumatoid Factor (not a reliable test but used frequently still), and a number of other tests to provide a blood profile. You will also be examined physically and it is always worth making some notes about your symptoms and their onset to take with you.
It is important to see a rheumatologist as quickly as possible. If you are diagnosed with RA you will benefit from early treatment which means faster control of the disease by the use of disease modifying drugs and less chance of long term joint damage.
Please post again if we can offer any further help.
All the best with your appointment.
Lyn x
Hi Lyn, Thanks for your very comprehensive reply to my first post on this site! I actually am a bit further down the line than I suggested. The reason my GP suspects RA is because of blood test results and symptoms to date. Because he knew I'd be in for a long wait, despite writing and referring me, he took step of putting me straight on DMARD Sufasalazine. Then when I had big flare last month, 2 weeks into sulfa and he'd checked the bloods, he doubled the dose. But unfortunately my glands came up all over my neck and ear, severe fatigue and depression - and then I had an itchy pink rash all over which got so bad that as soon as he saw me he took me off the DMARD - about ten days ago - which was a shame as all the joint pain had completely subsided. So finally - after a distraught shout down the phone - he phoned the consultant in Aberdeen and asked them what to do about me. The consultant asked him to take more blood for inflamation and Rheumatoid factor and has booked me in to his clinic in July - he recommended the Kenalog to act as light DMARD and symptom relief until he sees me so I had that yesterday. But I'm not too bad anyway just now although I have this round the clock heat in feet, arms and fingers all the time and my thumb and fingers are all stiffening up and aching again. I think the joint pain has been creeping back since i stopped the Sulfa.. mostly in fingers and right thumb. But period of not being able to bend knees and intense pain and swelling in various joints, both big and small, seems to be over for now time being at least! So I'm a lot happier today knowing I at last have an appointment booked and this steroid should hold destruction at bay if I do have RA.
It can be a worry because I had everything go on fire ( exactly as you describe ) and could only cope by having 75mg of steroids in 24 hrs as emergency to keep me sane with the pain.
When i saw the consultant privately he wrote to my GP saying that the steroids had masked the disease temporarily as i became pain free and the swelling went down. However he predicted once I weaned off the steroids I would flare again and pass the DAS test and blood markers would go up. eg CRP and ESR . I dont think Rheumatoid factor is affected as it is an antibody but I dont know. Lyn will know. Good luck. get it treated soon or you might get more joint damage than u need too
fiona xx
Hi Tilda, welcome. Lyn has answered most of your question so I wont be to boring and repeat, What I would like to say though I also, in the very early years and now in extreme flare, have that feeling you describe and not just in my joints it appeared to affect my whole body at times leaving it feeling heavy and useless.I also took Sulphasalazine and had a reaction of an itchy rash so mine had to be stopped too. The kenalog injection will help see you through until you see the consultant and hopefully help with the inflammation and stiffness, better to have this than continue suffering the way you are.
I do hope you get sorted soon on something more suitable to control the disease.
Good luck and keep us informed.
Mandy xx
Hi Mandy - I should have put the deep heat sensation as my headline question really. I put the Kenalog first because I'm a little anxious about whether or not the symptoms of RA can still be detected if my rheumatologist appointment is sooner and the steroid is still holding things at bay if you seem what I mean? - I still haven't had the hospital appointment card and only know that it's in July - but not when yet?
It is reassuring to know that you have experienced similar symptoms - but in my case the heat thing is not unpleasant really. As I've said I have been having it in my wrists and arms for at least a year - whereas the joint pain only arrived fully after Christmas. A friend even suggested that it might be a healing thing - so that it cushions against the pain somehow - and I should perhaps embrace it?! But frankly I'm suspicious of it now because it seems to often herald the start of joint pain and is the most consistent symptom I've had to date - whereas everything else comes and goes in just about every joint - usually quite symmetrically as a more classic RA indicator.
My GP initially thought this was a post viral arthritis but took blood for rheumatoid factor to be on safe side anyway. He didn't get back to me for two weeks and I was racked with joint pain and weird heat thing and knees, feet and wrists were all very sore - but assumed he would have phoned me if the factor was positive, as promised - so thought it must just be the post viral - which goes away I'm told. So when he did phone and say that my factor was positve and my inflammatory marker was "soaring" and he thought it was probably RA after all it was a bit of a rude shock!
And I am glad to know that rash from the Sulfa wasn't just my own side effect although sorry to hear that anyone else had this reaction. It has made me a bit jumpy about taking anything else now I admit but this Kenalog doesn't seem to be making much of an impression yet - right foot still sore, fingers still throbbing vaguely but starting to wonder if it's all in my head? It's the uncertainty that has been getting to me most though. I'm a freelance artist - mainly using embroidery - and things were going swimmingly for first time in 20 years career wise until all this - so I'm trying to keep a low profile in case commissions and career is adversely affected - but making art keeps me sane and is all i've ever done through parenting three sons to near adulthood so it's been very scary to think of things changing now that my wrists and fingers have been so much less efficient. I'll never take them for granted again that's for sure!
Tilda x
Hi Tilda
Ah right, your further posts make a lot of difference!
The Rheumatoid Factor test used by GPs is not an adequate diagnostic tool for RA although it is often used as such! Positive RF can show in the bloods without there being a diagnosis of RA, likewise patients can show as negative for RF, as indeed I did, and yet have very severe and aggressive RA.
Kenalog is not a DMARD (not even a light one!!). It is a corticosteroid and will have no effect whatsoever on the progress of the disease. So, fingers crossed for an early appointment! netdoctor.co.uk/medicines/1...
Sulphasalazine is a DMARD and is used to halt the progression of the disease. Other similar drugs include Methotrexate, Hydroxychloroquine, Leflunomide and a few others. The usual way of treating newly diagnosed patients in Scotland is by combination therapy of three drugs all at once, step down method, reducing as symptoms subside and the disease is brought under control. In England we use the step up method, usually starting on Methotrexate and adding drugs into the mix as required. Both methods seem very effective in the control of RA.
If the anti-CCP test (mentioned in my earlier post) is done it will give a definitive diagnosis which is why it is important that this test is carried out. It can only usually be authorised by a rheumatologist. The window of opportunity is regarded as 3 months from the onset on symptoms so important that you are seen quickly and started on treatment soon. I would be very inclined in your circumstances to ask for hand X-rays to check whether any damage has already been caused in view of the long standing symptoms.
The steroid should be starting to kick in by now, usually 24-36 hours after injection. Did you rest for the first 24 hours? This is quite important to allow the drug time to work through your system.
Hope you are starting to feel the benefit 
and the appointment card drops through the letterbox very soon!
Lyn x
Hey thanks so much Lyn. Your advice and the information you are relaying to me is very useful but a bit alarming. I have established that I can do nothing more to prompt my GP to hasten/ fast track the referral because it costs NHS Orkney a great deal annually to be flown down. My GP has made this abundantly clear to me several times. I've considered the option to go private, although it would go against all my principles, income bracket etc but the practicalities are also fairly unsatisfactory and I think I'd undermine any support system that might exist for me locally by doing so. So I was feeling stuck between a rock and a hard place to be honest - and now you are saying that the Kenalog isn't going to make any difference to the progress of the disease - if I do have it? That worries me a lot! So yes I hope that card comes through the door on Monday and will chase it up if it doesn't - and even will cancel a planned holiday in early July if it's then.
No the nurse who administered the Kenalog didn't tell me that I had to rest so I didn't take it that easy at all last night and enjoyed a party and a steep walk up the hill home in the early hours. And I admit that the creeping up of pain since I quit the Sulphasalazine in finger joints has been more noticeable today - with the odd stabbing pain in my right forefinger and I'm hobbling a little on my right foot once more today - so I had perhaps better cease typing and try and and concentrate on Wallander - which has my partner's full attention right now!? I wondered if a big post DMARD flare may be kicking in now - heralded by all this deep heat - and if so perhaps even the steroid isn't going to deaden it when it reaches full pelt?
Thanks so much to both of you anyway - it is at least a huge improvement to have such experienced people to talk to - who know the ropes and understand. It's been a pretty isolating experience to date because even my family don't understand all the implications or relate to the type of pain I've been experiencing - and I don't know anyone who has had RA personally.
Tilda x
Hi Tilda, getting to see a consultant obviously doesn't come very easy for you so you are going to have to make the most of your appointment when it comes! Going back to the Kenalog injection it's meant to be just a temporary thing to get you through until you see the consultant. How long they last varies from person to person and like lyn said you are generally advised to rest aferwards, the kenalog is used temporary for the inflammation and pain. I have the depo-medrone injection which is pretty much the same thing. You need to get back onto one of the DMARDS to slow the process of the disease
Mandy xx
Thanks Mandy - but getting back onto one of the DMARDs isn't an option until I've seen the rheumatologist as my GP is now following his instructions only - and the Kenalog and repeat blood tests were done at the consultant's request as an interim measure until he can see me. At least I did get 3 weeks of a DMARD before it all went pear shaped though? I think it's all in the lap of the Gods now and I'll just have to keep my achy fingers as tightly crossed as they will go! Tilda xx
Hi Tilda,
Welcome to health unlocked, NRAS have a fantastic helpline if there are any questions you cant get answered on here or by your GP give them a ring I know Ive used them lots and found them very helpfull.
As for the heat feeling in your joints Ive had this normally just before my joints flare but also while they are flaring they are hot to touch. This is one thing my Rheumatologist checks every time I see him, feels how hot my joints feel.
I have to say that steriods seem to be the only thing that mask my pain for the past few years for me, DMARDS havent worked on there own and Im now almost 3 months in on anti tnf treatment and still needing 20mgs of steriods a day.
Anything less and I flare, I also suffer badly with hot flushes and am only 33.
I have family living in your area, I never thought about how hard it would be to get to a hospital etc living there.
Do you have to fly to your nearest hospital?
I hope you get good treatment next month
Take care
Julie
Hi Julie - thanks for your response - interesting to learn that limb and joint heat is pretty common in various forms with RA. Sorry to hear your story re DMARD failure etc. I'm 48 and very thankful that I've had so many years without suffering from all these things.
But I'm also going into ostrich mode a now and think I should have waited for a confirmed diagnosis of RA before joining this Health Unlocked because your advice and experiences - although very well meaning I know - are also scaring me more than I can cope with.
I didn't get to sleep last night until past 2am - mainly because of teen comings and goings - but also because of non specific discomfort and worry. Now propped up in bed feeling flu-like lousy with aches and stiffness in almost every joint - in my cheeks and jaw even - and the burning sensation is now wide spread and consuming! I find that I can move and use my fingers despite the throb - but all is really unpleasant and aching - especially my elbow. I don't know what is going on really but after only four hours sleep I've decided that I won't join in disussions again at least until after get a proper diagnosis of RA - if I do that is.
Hope you all understand? I'm just getting more stressed at the prospect having to push my GP continually - and consultant who I yet even haven't met - all in a small island community with a small hospital that has no trained rheumatology team. In fact we are considering moving away from our home of 23 years now if I do have this disease, but for the fact that my husband would find it hard to get such a comparatively reasonable wage as a night care worker elsewhere. Also because two of our sons are still at school in the middle of important exam years and uprooting them now would be too stressful to contemplate! Thanks to you all for the information and advice though. Take care and bye for now!
Tilda
ufortunanately when you are ill you need all the medical help you can get , I have been there with the joints on fire its hell, make sure you have pain relief max safely possible and regularly, warm baths and showers can help. rest, and do pester, private is a difficult one the cheaper dmards such as methotrexate and sulphasalazine are affordable but the biologics. ant tnf are not. you will prob be started on the older dmards like methotrexate.. consultant apoint average £150-200 methotrexate tabs cheap as chips but the consultant might chose something more expensive? it the most common drug used. It might be good to speed things up to go private initially but this is political/ financal hot potato!!., dont rush with moving etc.. far cheaper too have one private consultation?, to start things moving?
regards alison nhs pharm
went private for my first appoint as my nhs in mainland england took over 4 months waiting times in my area all are 4 months in most cases eg had womb biopsy consultant within 3 weeks but procedure wait 4 months also luckily it was ok!
couldnt afford to be off work that long
Hi Tilda,
Just wanted to say hi, and to add that RA presents itself in many different forms, and that although the standard reply by definition is early morning stiffness lasting > 30 minutes. That was not my experience. The external signs of inflammation came much later, I had as you describe an internal burning painful sensation in my joints moving from area to area trying to catch hold, thats how my consultant described it!. I don't mean to frighten you but this disease may progress quite quickly and I would try to see a RA Consultant as soon as possible. Current thinking is that there is a window of a few months, where if they can intervene with correct combination of DMARDS you have a greater chance of remission & less joint damage. This of course if my interpretation of what I have read. Sometimes, you can become overwhelmed by information, so get to RA Consultant ASAP, keep ringing, look for cancellation, be assertive.
Good luck, and try not to worry, there is new meds coming on all the time, and they will find something to suit you and help slow down the progress of this illness.
Gina.
Hi Tilda Welcome.. it's me bringing up the rear again. You have already had some brilliant advice on here, and all I can add is, snap!!! Having hot limbs which I thought was the menopause was a symptom I had yonks before any swellings. After being someone who always felt the cold, I went to sleeping with a summer duvet all through the winter and wearing just t shirts in house! Didn't realise at time what it was, like you, I thought it was menopause, but it had been going on for years! Silly me.
Good luck at your appointment and meantime,,, be careful out there..
Julie xxx
Thanks again to you all. I know I have to keep pushing but it is very daunting doing so in a small place where everyone is a known face, or even a friend, including the GP. I have pushed incredibly hard to get to this point - having first gone to the GP with symptoms over 2 months ago - and have now hit a lightly padded brick wall. This is why I can't cope with all the advice to tell me it's not soon enough etc - because I now feel impotent to push for any more!
The rheumy comes up here for clinic 3 times a year and my GP says I'm booked for the next clinic in July sometime. There is a video link to Aberdeen at the hospital but as the physio who takes it isn't a trained in rheumatoid and nor are the nurses so my GP has serious doubts about it's efficacy - especially for a first consultation,
I think I'm into my second big flare now as all is swollen and sore - but it's not nearly as painful as the first one - because of the Kenalog I imagine? So I admit I'm partly wishingthat I get so doubled up with pain and swelling over the next few days that my GP has no choice but to send me down to Aberdeen to see the consultant. But I've never been able to act or to lie so I can't just invent or exagerate symptoms just to get there - or can maybe?! I'll let you all know when and if RA is finally diagnosed.
PS really interesting to learn that someone else has had exactly the same experience of thse deep heat flushes well prior to the onset of joint pain - thanks Gina - it's pretty scary for me to know - but also useful as well re coming to terms etc
i get hot am hot now.. due another bad night of joint pain>>? no im not menopausal wishing you speedy and effective treatment
Yeah me too - right now feet and hands and kneck all going at full pelt like mini internal boilers - with pain flashing about from finger tips to knuckles, wrists. knees and toes. Maybe I won't have to lie to be flown down to Aberdeen and see the rheumy after all?! Hope you have a better, cooler night tonight. Take care Summer.
Hello Tilda, just to make contact really. Its nice to hear from someone else in Scotland, though sorry that it means you have this horrible disease. I moved to Edinburgh from Oxford a few years ago and have found the treatment at the Western General very good. But I understand that the Scottish system (praps its just here and not Aberdeen) doesnt count the Ccp but just the ESR although the did it when I asked for it. ESR gives you a more gradual. longterm picture while the CCP is more of a snapshot.
It must be hard being so far from treatment centres but I suppose that your GP has to be more plugged in to a variety of issues that otherwise would be directly referred.
My initial RA feelings were shortly after an unproblematic, late menopause, sharp pains moving around my body, shoulders, elbows, less so hands and feet which puzzled everyone. And I did have hot hot limbs.
Oh yes and you mentioned that you're an artist. I've been diagnosed for 10 years+ now. Doing courses at the ECA for the last few years and havent found things too difficult. I mainly paint and draw. Sometimes I've found it hard to hold a heavy sketchbook, but then I just use smaller, lighter ones. No problem for me in holding a brush. Standing at an easel is a problem, so I sit, but try to get up from time to time. So I hope you're going to be OK. This is a great forum for airing questions and getting and giving support.
Cathie
Hi Cathie - good to hear from you.
So glad you all didn't abandon me in disgust when I got all anxious and tried to jump ship at the weekend! It is also really good to hear from someone from Edinburgh too because we are seriously considering moving there in a couple of years, when our teens are at less critical stages, for family and art reasons.
We've lived in Orkney for 23 years but the strong possibility that I have got this disease is influencing our feelings about staying up here I admit. I'm from London originally so Edinburgh, where my oldest son is now studying and where my uncle lives, would be the ideal compromise/ half way house. We know it well because my mum's family came from there (dad's from Oxford!). I've pasted your bit about ESR and Lynn's about CCP onto my mobile so I can learn all these terms for when I finally see the consultant. Still no hospital appointment card - if nothing comes tomorrow I'll phone the hospital because we were planning to go to Edinburgh for a week in early July and it'll be just my luck if this Orkney clinic is right in the middle of it!?
Things feel much better for me today. Still lots of heat and sharp bursts of pain everywhere, especially in finger joints and thumbs, but I've noticed that all the stiffness has gone away - which I think must be the impact of the cortosteroid Kenalog? So I've been working (stitching) away all morning which has been great.
Cheers for now,
Tilda
Hi Tilda and Cathie
Just to clear up a small confusion in terminology!
Anti -CCP is a test that is done to check on the level of cyclic citrullinated peptide, a particular type of protein found in the body. Patients with Rheumatoid Arthritis begin to make antibodies against these particular proteins. It is a useful early tool used in the course of diagnosis, sometimes even before all of the symptoms have manifested themselves. Used in collaboration with the results of the Rheumatoid factor and presenting systems the anti-CCP test is very reliable.
CCP is not to be confused with CRP!! CRP is a test that shows the amount of C-Reactive Protein in the blood and therefore levels of inflammation. This has a similar function to the ESR. Here's a link to a blog I wrote on this a couple of months ago nras.healthunlocked.com/blo... Hope it's helpful
Pleased to hear that you have jumped ship Tilda ... You need to be at the helm taking control not diving into the drink! We've all been there
Lyn x
It should actually read "haven't jumped ship"! I knew I should have read it through ... silly hand doesn't work with brain properly!!
Hi Lyn. Firstly thanks for the blog - which does help me understand what I will need to look out for and question when I finally get to meet the consultant. From what you say I think the test I've been having to date, that my GP describes as "an inflammatory marker", is probably the ESR one? He would tell me if I asked but there is so much to learn that he probably feels that it's a bit early to be giving me all these initials and anyway I have had so much else to ask about at each visit! And yes Cathie is right to say that GPs here do have to have a wider understanding of conditions that other GPs refer. I know this because I have two GP friends in Orkney who have both worked elsewhere.
The reason I felt tempted to jump ship is because I felt so lost in all this new world of things I am being told to do and to ask. As a parent of three teenage sons, the eldest of whom has Asperger's Syndrome, I have had many years of battles and confrontations and have got used to forcing myself to be demanding when required to. This son is currently struggling to remain at his uni because he misunderstood a protocol matter and accidentally missed a module so my partner and I are having to watch possible car crash from the sidelines because he's insisting on sorting it all out by himself - and so far failing abysmally. So that's a battle currently unfolding, another is an ongoing one at the school my other two attend - where cuts in some subjects are directly affecting their learning. Then there's the ongoing battle intrinsic to being an artist - applying for commissions and exhibitions, juggling stakeholders and trying to keep a high enough profile to keep on board!
Of course I do realise that everyone on this site has "been there" in terms of pain and suffering and that you have all got a wealth of experiences to relate. But I'm not sure if anyone here has experience of living so far away from a rheumatology centre/ large hospital, or been so dependant on one man, my GP, who I might bump into ten minutes later in a queue for groceries, or sit and have a drink with on the ferry, or watch playing the fiddle at a folk gig?!
Being "at the helm" on this particular issue is so far out of my usual comfort zone, and with so many unrelated battles to keep fighting, directly or indirectly that it is doing my head in completely?!
Last week I summoned up the energy and confidence to challenge my GP. This made my GP defensive but it also got him talking on the phone to the consultant - result! I now have found out, by phoning the local hospital, that the next clinic is on 21st or 22nd of July (no apt card yet?)
But I just can't see myself walking (or hobbling) in to see this man and being overly demanding at a first consultation. Surely I have to meet him and trust that he knows what tests he requires to make this diagnosis initially? I don't want to alienate him at the first sitting by being too pushy and reeling off initials of significant tests, DMARDs and xrays. I know it's all a balancing act between my health and finding time during this one consultation to find out everything I can if the diagnosis of RA is affirmative - which from everything you are all saying here I think it is. This is getting me in a bit of a panic I admit because there will be a queue of other patients waiting, with only a two day clinic for his quarterly visit up here. Shouldn't I just let him do the hard work?
PS sorry if I've been a bit OTT with the life story - just trying to make the point that I'm used to sticking up for others - but find it much harder to battle for myself?!
Hi Tilda,
Coming in late here but just wanted to say - do what feels right for you in your individual situation, which only you know best. I understand your reluctance to get off on the 'wrong foot' with a consultant whom you haven't even met yet.
Decide what is important for you to know at this first appt - perhaps only a diagnosis and idea of treatment options? - there's plenty of time to read NRAS booklets when you know what your diagnosis is. Nothing happens very fast in rheumatology, all the drugs take several months to kick in and their affects to be felt, meanwhile steroids are often used for cover.
The one thing that is helpful is the Nurse Helpline for your consultant's clinic - I presume that this will be on the mainland - everyone has system overload at initial appts and questions that they only think of afterwards so this can be a good number to have!
It's normal to feel overwhelmed and scared about the implications of a diagnosis, just take it one step at a time, it sounds like you've got plenty on your plate for now with the rest of your life
I'm glad that the kenalog has kicked-in, it should cover you 'til your appt.
Take good care of yourself,
Cece x
Hey thanks so much Cece - I'll keep a note of all questions to ask him if time and situation permits. Certain there isn't a nurse helpline up here. Could be lucky that I'm exhibiting twice in Aberdeen later this year eh?
Cheers,
Tilda x
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