I'm new to this (in every way)

Went to docs in April with ONE swollen finger.Blood results in May confirm R.A. with a score of 83 (dont know what the number means) Had x-ray on hands yesterday & my 1st app at hospital 19th June.In 2mths I now have most fingers swollen,painfull,stiff,(look like sausages)little finger jiont stuck out. It seems silly but I am getting some comfort out of reading your blogs (not on my own etc..) Glad I found this site xxxx

Any advice welcome x

36 Replies

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  • welcome.. well a prompt diagnosis.. for you and you are on course for some treatment?

    Take a list of questions to hospital appointment x

  • What kind of questions, said I'm new to this lol x

  • about treatment?? what your blood results mean etc as it is all new to you x

  • Sounds like you've got a good GP! The earlier that you get properly diagnosed then the better if it's RA, so hopefully the consultant will confirm one way or another on 19th. The score of 83 you got was probably the reading for your Rheumatoid Factor, where anything over 20 is considered positive. But it's not a 100% guarantee that you do have RA, so keep an open mind even tho' with sausage fingers it does sound likely. And do use somehing like ibuprofen to keep your fingers in check, it can really help. But maybe stop a day or two before appointment so they can see you at your worst. Oh and take photos of the sausages just in case they've calmed down on the day. Polly

  • Thanks for explaining 83, doc did say its high score. I also have osteoperosis & psoriasis Do u think they're connected x

  • Oh, maybe was ESR then (which is a measure of inflammation). As 83 is positive, but not that high I think. I'm no doctor, but it does seem v common that we have these sorts of other problems so could well be a linkage for you. The one thing I do know about this )%^* disease is that it's hugely variable so one person's experience can be v different from another's. Px

  • I'll prob understand more on wed 19th 1st app or find out more on here xx

  • You might want to look up Psoriatic Arthritis too in case the rheumatologist thinks it might be this if you have psoriasis already? You could ask your surgery for a print out of your blood results to take with you. If you get this then you can copy it and keep it as a record and you can get to know more about each of the results. From my experience with RA the more you know and the more you can be involved the better. If you do have Psoriatic Arthritis it is treated very similarly to RA but you would probably have a negative Rheumatoid Factor. But as Polly says your doctor may mean your ESR (inflammation marker) as that is usually a good indicator that your arthritis is inflammatory by nature and 83 is high. Good luck - and take photos of swollen finger joints if you can I agree. Tilda x

  • doc thought it might have been psoriatic arthritis,But when he got blood results said its RA . The inflamation marker sounds right & now I'm taking my sausages to bed.I have learnt so much tonight Thank you all . Hubby thinks its upsetting me But I'd rather know then like u say I can ask the questions xx

  • Hope you got a good nights sleep with sausages. From what you say about GP ruling out Psoriatic Arthritis this 83 refers to your Rheumatoid Factor. This is just one test for RA, there is another one and your inflammatory markers are important too.

    The rheumatologist will look at all these blood results and examine you to try and decide what diagnosis to give you, if any. It isn't a forgone conclusion yet I would say, although RA sounds quite likely. Sausage fingers can go with other types of arthritis and it depends which specific joints are swollen. As I advised earlier it would be good if you could get a print out of your blood results from your surgery for your own records and interest. It helps to see an overall picture and for your research. Tilda

  • just got off phone from docs, requested print out of my bloods( then I might know what I'm talking about ) be a 1st ha ha . Going to work now (welfare ass) love it around the children helps u forget ur problems x

  • Welcome to this site, there are some wonderful people on here, I have learned a lot about RA from a lot of helpful people, we are all here to help and advise and cheer us up when we are feeling down.

    Good luck with your appointment and if you can take someone with you it will help as you cant remember everything by yourself.

    Take care, hope to hear from you again,

    Wendy x

  • thanks it means a lot. Hubby coming with me (but he's a big softy) he thinks this site is upsetting me but its doing the opposite x

  • My daughter was like ur hubby. She thought the site was upsetting me as she would often find me crying having been on here. But actually the people on here have explained so much and offered so much advice and comfort and information that gps and hospitals have not been able to provide. So welcome and I do hope u get some answers from rheumy team soon.

    Dont expect them to diagnose straight away though. My esr was 79 and ra factor in the hundresds but still they explored less serious options like post infective. My diagnosis was confirmed as ra, but when my fingers swelled like sausages I was also tested for psoriatic arthritis as it is possible to have both apparently. Confusing isnt it - hence the reason y gp is not meant to make the diagnosis.

    Gd luck.

  • Because of the advice off this site (in less than 12hrs)I am requesting print out of blood results cos have no idea what ESR or ra factor means. Just said 83 thats high. He had blood tests for Psoriatic (cos I have psoriosis ) but said they all came back neg.Had X- ray on hands tues so consultant can look at those,Sorry to go on but does anyone h

    ave problems with toes, as I do !!!

  • Yeah fraid so, even had problems with my jaw so couldnt eat. But on a positive, since being on 25mg methotrexate by injectiin I have been much improved. Ur early diagnosis is great as like me it hopefully means that there is little joint damage so far and once u start meds it should control the disease ie u wont always be in this much pain.

    It can feel like a slow process initially but like my consultant said, ra drugs r very powerful so we have to take it slow to ensure fewer side effects as poss. Gd luck.

  • Welcome to the site, hope you have a good appointment on the 19th, you can get splints to help your hands and wrists, I have a thumb splint which when i remember to wear it gives good relief. I agree that you should let the consultant see you at your worse, it takes ages getting appointments so make sure each one counts. Good that your husband is there, he can ask questions and remember stuff that you may forget.

  • This site is a mine of informatation,just ask anything that your not sure of and someone will have an answer for you. This site is global as well so there will always be someone somewhere any time of the day will have an answe for you. xxx

  • Hi. Welcome to this wonderful site. My husband was like yours and thought that researching everything wasn't a good idea. I explained how the more I knew the less scared I was. He soon saw how much support I was getting from this site and now when I'm on the computer he asks me if I'm talking to my rheumy friends! Tracy xxx

  • You really have a good doctor it can take a long time for a diagnosis I am still waiting for mine. Hope all goes well. This site really is helpful and a mine of information.

  • dont forget to do photos i took mine to show them at their worst

    i was told on here about this and i didnt think it would help much at the time

    but it realy is important proof just in case they go down.

  • Not sure how to use this site yet,do I reply to each and everyone of you or just one BIG thankyou.( I'm filling up ) as I'm writting this as the support is overwhelming. Only joined last night so going to have a good look at everyones blogs.I;m sure by 19th I'll know what I'm talking about (with a little help from you lot) thanks again Anne xx

  • A bit more advice - if you want to understand your blood results and what the tests themselves mean then the main NRAS site is indispensable. If you become a paid up member of NRAS then they will send you out a pack explaining what kind of questions might help to ask at your first rheumy appointment so that's my next suggestion!

  • Hi Anne

    As everyone has already said it's a great site, much better then some others. I only joined a few weeks ago despite my diagnosis being in Jan 2012. Like you I looked at lots of sites (not this one for blogs) but another one because I need to know information to give me perspective. However I would say I found it did scare/upset me for a while and was bringing me down (as I started to imagine what the future held), until such time as I came to terms with the diagnosis. So I stayed away from them until recently when I joined this one. I have to say I wish I'd found this one first as the blogs and comments are so more considered, supportive and practical and would have helped me manage my consultant consultations better I think. The publications are also excellent and worth a read before your appointment

    I wish you the best of luck and tell your hubby not to worry, we all have to find our own level with this and how we learn to cope and what resources we use to do that will always differ from individual to individual

    Take care

    Ronnie xx

  • Thankyou so much. let u know what happens on 19th xx

  • Hi Anne,

    We are nearly in the same situation and I ,like you,turned to these brlliant people for answers and support. I too wasnt sure what the high rf score meant? but until I discuss it with the consultant I'm keeping an open mind.My appointment 4th july and like you lots of questions, re what will ensue,buzzing around. My fingers,wrists,elbows not puffed up but achey so taking panadol,and have stopped playing tennis for the moment as unsure if i may cause more damage playing!!!!

    Good luck with your appointment,

    Take care

    Terri

  • Dear Anne

    I am pleased to see how many responses you have had on here already and am pleased that you are finding this forum useful. I work for the NRAS helpline and thought we might have some links and information that would be useful to you.

    Firstly, here's some information on blood tests:

    nras.org.uk/about_rheumatoi...

    You might also find the following links useful, on what to expect from the early appointments with the consultant:

    nras.org.uk/about_rheumatoi...

    nras.org.uk/about_rheumatoi...

    The official diagnosis of RA (if it is RA) will happen when you see the rheumatologist and they may also start talking about treatment at that time. There is a lot of information on our website and on this forum, which I hope you will find useful, but you are also welcome to call the helpline if you want to talk things through with someone or having any questions. The helpline is available Mon-Fri 9.30-4.30 on 0800 298 7650.

    Kind regards

    Victoria

    (NRAS Helpline)

  • Thankyou for all ur help and I will look into the links x

  • Hello Lovingit, This is my first attempt at also although I have been reading this site for a very long time, but after reading 'lovingit' I was inspired to give it a whirl.

    I was told in 2012 that I had RA and to be honest I still don't know what to ask the rhuemy when I go, nor do I understand or remember what it is they are saying to me?

    What do they mean when they say I need to report any changes since my last appointment?

    keep a diary? it would be a novel by the time I go see them next!

    At present I have hot swollen knees,ankles, painful hands, the odd sausage finger, elbows, shoulders and collar bone pain, and feel dreadful right now. My hands are the most painful.

    Are all these sypmtoms related to RA ? I keep asking myself.

    I have, Underactive thyroid, Osteoarthritis, Asthma, sticky blood.

    I was told a year ago I had something called 'Essential Thrombocythemia' ? after seeing the blood Dr. Do I still have it? Did it go away?

    I am on 'Hydroxychloriquine' and take Zappain for the pain which makes me very sleepy!

    Happy days! gentle hugs to all

    from Happypeople

  • Hello to you to, love the web NAme!! Hope it's shiny happy people!!hugs Axx

  • got my blood results off doc. See what u make of these any advise welcome .

    ESR....Hi...21 mm/h

    Rheumatoid screening test....Hi..83.7 iu/ml

    Rheumatoid factor ..RAPA test...160 Titre units.

    I told Dr.K. about this site and how impressed u all were with my G.P.

    He said he is not a G.P. he is a Physician & he works in the hospital etc....he is new to our

    practice & I'm very lucky we've got him xx

  • Hi Anne, I am also a newbie, I went to the doc in Feb this year with swollen painful stiff hands so he ran blood tests, my rheumatoid factor was 620 titre ( they class you Sero Positive ) apparently a more aggressive form of RA. I was diagnosed with RA on my 1st visit to rheumatologist in March. It's been a roller coaster but 9 weeks on and I'm feeling more positive. I've had scans, ultrasounds, X-rays, weekly blood tests a and started on intramuscular Methotrexate. my GP and rheumatologist, rheumy nurse have been amazing and so fast ( appointments within 3/4 weeks of referral) good luck in your research. I have made my own blog on my laptop from day of diagnosis, I have pictures from every flare, unexpected lumps, my feelings, what support I had/needed its really put my life into perspective as I'm only 29 and have 2 children under 5 x

  • Well I feel lucky (in a way) I've had my 3 boys, 34yrs,32yrs & 22yrs.A full career & looking forward to retirement with hubby. I'm 58 this year but young at heart, love my job at school as welfare ass & after school club. I believe with everything I've read on here we've got this at a good time.:))

    Well its the 1st year for RA awareness week,more seriously the medication sounds very promising .

    I was told my RA Factor was high @ 160 but yours is epic lol. Can u make any sense of my blood results , I go on wed 1st app any advice( I cant give any yet dont know anything) Been told I'll prob have MXT How r u doing on it (needles ouch)!!!!xx

  • Hiya! Sorry for coming to your blog a bit late, but glad u r here! I think getting an RA diagnosis can be scary and sometimes folks on here have pain or symptoms that might make you worry but remember we are all different, there are lots of people who read the site and don't type to say hi, I am really well on my treatment and others like me who get comfort out of moaning and complaining!!

    Great you got a quick diagnosis, so you can get the treatment you need quicker! And you can do what you like replying, either one big end reply or individual ones, suppose it depends on how stiff the sausage fingers are!!!!

    Have a lovely weekend, my 2 older boys were here yesterday for tea, theirs girls were away, and my youngest has been parting after finishing her gcse exams, phew I am glad , I was as stressed as her!!

  • thanks for ur support,a bit anxious waiting for wed, just want to get started with treatment now,& hope I get some positive answers from consultant .

    I'm sure I'll be on here on wed night feeling more positive :))

  • Lol, look forward to it xx

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