My 1st week after being diagnosed with RA

Hello to u all,plse plse can anyone give me some positive advice,I am scared to death of being told I am dealing with RA,last dec I started suffering ball of foot pain,wrongly diagnosed as bursitis( as have found out ball of foot pain is a 1st sign of RA!! Then in April my fingers started to get very stiff,then my knees and now I have pain in my shoulders.i was referred to a rheumotologist in may and seen jukymafter blood tests I got a call from nurse saying I am dealing with RA.i have a strong/ positive anti ccp,negative ANA,negative rf and crp levels are 21.5.all I seem to read is if u have strong positive anti ccp I am going to get a severe disease,please help me and thankyou.

73 Replies

oldestnewest
  • Hi there,

    Being told you have RA is a very scary thing, so very sorry that you've had to join our club. Welcome anyway! But don't believe everything you read on the Internet. It's a hugely variable disease, so even with strong positive Anti-CCP chances are you'll be back to near normal in 6-9 months or so as if you can find drugs that suit you they can be great. I was really frightened to start with, and it's a big thing to come to terms with, but the modern drug treatments are much much better than they were. And improving all the time. And it sounds as if you've been diagnosed quickly so that gives you a good chance to as it really does seem as if you tackle this hard to start with then you get the best result. And even severe RA can be controlled now, if the drugs suit you.

    So hopefully you'll be started on drug treatment soon, if you're not already, and life will start to improve. Again it takes a while to cope with the drugs, and they can be rough to start with. But try to stay positive, and look after yourself with rest, and food, and gentle exercise, and you'll give yourself the best possible chance. I'm three years post diagnosis now, and things are fine even if not quite what I'd planned. looking back I think one thing I didn't get to start with is that it can take a long time to get stabilised, and I sort of expected it all to be better in a week or two as if it was just the flu. RA isn't like that, and it can be really hard to be patient and keep believing that it will improve when it all takes so long. Take care. Pollyx

  • bad news RA is a chronic auto immune disease, good news is they are loads of well tested drugs they can give you to slow it down, keep you pain free and stop the inflammation. I am 44 and was diagnosed with RA in April, this is a fantastic group and you get great advice here. When i was first diagnosed i phoned nrsa helpdesk, they are fantastic and reassured me. you will start meeting loads of different specialists to help you. uk arthritis research also have great booklets my OT gave me one. dont let it get you down and you control your RA dont let it control you. your rheumatologist and your specialist rheumatology nurse will become your best friends and help you fight it, dont keep anything from them. Keep a log of who you see and when and what they have done or given you. this will help in a wee while to get you benefits, blue badge etc. you will feel like a pin cushion with regular blood tests but all helps looking after you.

    dont be scared to ask a question on here, even if you think its a daft question, someone will always have been through it at one stage.

    chin up and keep taking the tablets

    Arthur

  • Thankyou so so much.i am literally scared to death of starting methotrexate,but know I will defintly try.i am seeing the rheumotoid nurse tomorrow so I'm not sure if she will give me the prescription or I will hav to wait for results of blood tests and chest X-ray,would u know? My next rheumotoid appt is end of October so I hope they don't make me wait til then as I want to start to feel better.i think as I'm suffering so much joint pain in such a short time,spreading from fingers to knees to shoulders in 3 myths,I believe mine is aggressive,but the more I hear this isn't the case.my blood results are not that good but don't understand why I have a negative rf,the rheumotoid nurse said hopefully my crp levels will hopefully come down wen I start taking methotrexate,so fingers crossed.thankyou for taking the time to write to me and reassure me.i will let you know how I get on tomorrow.thankyou prolly x

  • Hi,Welcome.I too was diagnosed as sero negative RA (ie no RF factor).I was started on MTX and then was changed to Hydroxy and Sulfasalazine.My pain before was so bad I didn't think anything would work but now almost a year to the day I'm almost pain free. So please don't despair about taking these strong drugs. If one doesn't work there are plenty more to chose from.

    Carolyn x

  • Thankyou Arthur I'm seeing the rheumotoid nurse tomorrow to chat about methroexate and having blood tests etc.so hopefully will be starting soon.i worry I will have infection after infection,as have read the drug lowers your immunity,but I've got to give it a go,as I know it won't get better by itself.to be a normal person this time last year to now I am heartbroken,but positive that in time I will feel better again,many thanks Arthur x

  • Hi there

    You will learn to keep away from family and friends when they catch a cold or aren't well, its best that way. You will also get the flu jab free off the NHS anyway when on methotrexate. I was told 3 years ago that I have RA, I was cripped with my hands it then progressed to my shoulders, knees and feet, in 1 month I felt like an 80 year old. BUT I am now back to normal, occasion ache and pain but thats just with age. I take ginger capsules and started taking them when I read up they are good for inflammation and sickness. They do say you will feel sick with methotrexate how ever I didn't whether that was down to taking ginger capsules morning and night I don't know. I didn't find it worked for me so I am now on another drug, it has taken 3 different drugs but I have now found one which works for me and you will to!! I am a great believe in food playing a big part to this condition aswell!! I found I would have a flare up when I ate white bread, beef, milk, yogurts. I removed these from my diet while trying to find a drug which works and it helped immensly!!, I will now have these occasionally but have kept off them just to be safe. Everyone is different what works for me may not work for you thats why there are different drugs out there as we all react differently to them. I know its hard right now to think this will get any better but it will. The one thing I will warn because my doctors forgot to mention this is some of the pain killers they give you may make you sick!! I was give something at the beginning and wasn't warned, took it like it said on the packed 3 times a day was like a Zombie and sleep constantly. Again this is a trial and error finding one that works for you, if it doesn't tell them right away!! I hope I have been helpful and have made you feel more at ease :-) it will get better I promise but not over night it will take sometime. Take Care Bev

  • you will be fine, you start with a low dose of methotrexate, i found it best to take it just before bedtime after supper on a Friday night. Sleep through any effects and if you get tired or anything you have two days before you go back to work on monday.

    they might offer you a steroid injection you give a bit of relief before the drugs kick in. Take it or ask for one, they help. Just lock the fridge, you do get an attack of the munchies.

    you will get painkillers and an anti inflammatory tablet.

    i am on tramadol and naproxen as well as methotrexate and you get folic acid.

    i dont know much about blood results, ask your nurse to explain them

    mine was "CRP" was 30 and "ESR" was 33 so well up there, but dropped dramatically when i started on methotrexate. it does take weeks to kick in.

    good luck

    Arthur

  • Hiya I'm Claire and I was just like you 3 weeks ago! Scared apprehensive etc etc...it's mad but your blog is completely the same as me , my feet hurt in Dec I thought it was my new boots! Then April time my fingers and knees got sore after blood tests was diagnosed with RA early stages and given methotrexate straight away! I don't know all my levels of crp etc but am seeing consultant again next week and gonna ask LOADS of questions. I am onmy 3rd week of Metho with little side effects (thank god). I came on the site and my god the people have been amazing and everybody I have spoken to say how important it is to start treatment early for better long term results. I am still big time trying to come to terms with all of it and the life change etc but everybody on here are so kind and you'll learn loads. Take care and take each day at a time ..thinking of you C x

  • Hi Claire,omg it's unbelievable the coincidences !!! Did you have to wait for rheumotologist to prescribe methroexate? I'm going to see the nurse tomorrow for blood tests and info on starting it,will let you know how I get on.ps,I also thought my foot pain was due to wearing high heels all nite and dancing !! It was only in 1 foot for months,until April when stiffness started in fingers,then knees,then shoulders and awful upper arm pain.how do they diagnose RA early stages,just by your symptoms?i have no idea where I stand,but I kept going and going to the dr until he referred me to a rheumo as I knew something was so wrong.how are your fingers and feet and knees now?x

  • NRAS is a great source of help and information. They can set you up with a phone call from someone who is or has been through the same as you. I was diagnosed 13 years ago with sero-positive high RA factor, 13 years on i am doing not to bad. Early diagnoses and medication to stop the RA getting worse is what the Rheumatologist work on. NRAS also have support groups in lots of areas, some maybe local to you, i currently run one in the south west in Weston Super Mare, have a look on NRAS website to see where your local one is, they are very helpful. I have had to change medications a few times due to it wearing of but i am much better when the medication helps which it will but can take a while. My first Rheumatologist said to me when i was first diagnosed 'in 10 years time you might be in a wheelchair' that scared the life out of me, but gladly i can say im not and lead a normal-ish life. just listen to your body and take things easy, try not to do too much at a time, take regular breaks and rest often. Hope you feel better soon,

    take care

    Dana xx

  • Hi Dana

    I was just catching up with the latest on here (I'm very new) and was astonished and pleased to read that you run a support group in Weston-s-Mare - my home town! Could you let me have details of the group please as I would like to come along. Apart from this site, which I found by luck, I do feel a bit isolated. I'm into my 8th week of taking MTX so still waiting for it to kick in and still learning all I can about this challenge called RA. Thank you Jane xx

  • Hi Jane

    I have sent you a private message, it is hard to take it all in when you are first diagnosed. Hope the Methotrexate starts working soon for you, look forward to hearing from you xx

    Dana

  • Hi shell .....its all weird when you look back on it. Mine started with sore wrist,moved to arms ,shoulders(awful) and you wonder what the help is going on!! You go from being "normal " to feeling like you can never put your own clothes on again pain free ! Very scary. My ESR was 52. Was told I had polymyalgia ,even though I was only 48 ,put on high steroids and all pain was gone in a week ,amazing!!! Have since been diagnosed with RA and has been an up and down rid. It is a lot to get your head around but be kind to yourself and come on here when you you need a boost or advice as this site has helped me so much. The people are so kind on and caring AND will understand everything you say ! Lots of gentle hugs to you. You will feel better. I take methotrexate too. Give it a try,it will help and if not there are lord out there. Keep us informed how you get on x linnie x

  • It shouldn't affect your spelling as it seems to have done with me this morning!!!! Have a good day x

  • i work in a secondary school with 1200 snottery kids and i have not picked up anything from them. your immune system is slowed as it is in overdrive just now, but slowed to a normal ish level. but dont hang about sick people, only thing you need to watch out for is chicken pox/shingles. hopefully you will have had chicken pox as a kid.

    forgot you will also get a pneuma vaccination to stop 24 types of pneumonia every 5 years and an annual flu vaccination.

    i was onstage last year with my local amateur opera group, not doing this years shoe Copacabana but i know i will be back next year, dont give anything up just step back for a wee while until you get it under control, i am still trying different concoctions 5 months down the line trying to find what is best for me, its not a quick fix.

  • How did I miss out on this Barry reference!! Please send me an alert next time!!lol Axx

  • Love him too....wish he would tour UK x

  • I was one of his backing singers on his 2004 tour when he did 2 nights in Glasgow.

  • No way!!!! Are you serious or winding a poor lady with RA!! If serious ......wow...wow....wow!!!

  • he toured last year but very short tour and expensive now. He used to tour all through the 80's till he got the Las Vegas contract, but at the 25th anniversary of his first Blenheim palace tour he said he was of the Vegas, we were all annoyed cos we were the ones who made him famous in Britain and now we get one show in London! however keep in touch and if you ever wanna go message me co he will do another tour no doubt next year!!!! Sad admission I saw him every tour from 82 till Vegas, I know it is sad, but its a great show. Now dont forget I also do festivals etc so not a maniloonie, honest!!Axx

  • i put up a new blog with the pic with me and the barry choir

  • You lucky thing....tried to see him in. Germany in early eighties but it got cancelled last minute due to him being ill.....gutted! It's not sad at all. Would love to see him. Take care and keep the side up.. x x

  • u wot!!! now I hope u not joking cos I was there and that would have been amazing. did u meet the man, really wow??!!!!! do u still sing? OMG

  • wot!!!!!!againAxx

  • I guessed I think!!

    Ok his backing singers were american and blackskinned and you are scottish and from you photo white skinned so not the backing group as such.

    BUT Barry has a local choir or group to back him on "One Voice" at the end of each show,, and am I right, that was you!!!!!! Well done mr B if so lol

  • Arthur I'm in a junior school as an LSA ....yep it's snotty !! Wish me luck I've only been back to school with RA for 2weeks .....I do think though good diet etc help with immunity and I'm going to try Reiki treatments heard its good , all worth a try eh!? Claire

  • I teach College students!

    I carry around a bacterial spray in my pocket, use it continuously; I've told each of my classes that my Immune system is rubbish and if they are suffering could they please let me know (so I don't sit directly with them that week) and they are happy to sit at back. After 7 infections so far this year, I've had enough :)

    Thinking of reiki also, would you let me know if you try it?

  • Of course probs next week will let you know x

  • Thankyou this is so reassuring,I have had chickenpox as a child yes defintly,so fingers crossed.have you tried methroexate?this is the only drug my rheumotologist is trying first.thankyou for all this info Arthur,I'm feeling slightly and I mean slightly better already haha x

  • i started 5 months ago on mtx, up to 20mg now, i also take 2 hydroxychloroquine and 4 sulphazalazine, 8 tramadol, 2 naproxen, 1 omeprazol, 1 folic acid. you get used to taking the tablets.

  • Yes MTX is the first line drug and the "gold standard" treatment. That's what lots of us are started on, me included. And the leaflet you get with it is really, really scary but they have to tell you everything even if v rare so try not to get too nervous about it. I haven't had so much as a sniffle since I started it, and tho the first few weeks were a bit rough I was fine afterwards. Like Arthur I think it best to start with low dose and work up slowly, so if they give you more than 7.5mg to start ask them why. And if they don't start you on it tomorrow also ask why, as the chest x-ray is mainly just to have a base line for future reference. The sooner the better as can take 3 months to really start working. CRP in the 30's isn't horribly high, and like you I'm sero-negative, so don't fret too much about it now as there's lots to learn and it will make more sense soon. It's all a bit overwhelming to start, so do also allow yourself to feel really miserable and not bottle it up. I've found my rheumy is great at my joints, but pretty rubbish at the emotional impact! Pollyx

  • Just to say what a star you are, Helix. You are always there, offering sound advice, especially to the newly diagnosed.  I don't underestimate the amount of time you spend on this, but nor do I underestimate the enormous support and comfort you are. Bless you.   Jo x

  • Sweet of you to say so! But it not all altruistic, as is part of my pacing strategy to sit down for 10 mins every couple of hours and HU is a good way of doing it.

    And why are you keeping your knees up in the middle of the night?  they need all the rest they can get in preparation for their big day. 

  • I'm wasn't!  They were keeping me up.   They are both so painful at he moment. I wake up when the codeine wears off ( if I've been lucky enough to get to sleep), then take another but they take a while to work.  They don't remove the pain, but just take the edge off it.  J x

  • Hello,

    I feel so bad for you, this is such a scary time for you and hopefully the worst of it as now your diagnosed at least someting will get done about it.

    Your looking for positive advice, not sure about advice but I'll try keep this short!

    Diagnosed Feb 2011 after giving birth, social services had to come in and help as some mornings I couldn't change a nappy ect (just moved new town and little/unwilling family to help) , could only shuffle, every joint was swollen and stiff, I was told It was severe, aggressive and I panicked, my readings were all high and thought it was a matter of time before I was completely disabled...

    (I have written a blog if you want the big long version!)

    By December that year my DAS score came down from 7.6 to 1.35.

    I'm even better now, back working, get to the gym (when I can fit it in!) and all the family stuff that needs to be done, 95% better :) I even found myself running down the corridor at work this week in a pair of heels!!!!

    My immune system is dodgy and have had several infections this year however that really is nothing in compared to the RA.

    For me, the hardest time was where you are now, please focus on when you'll get better, you will, starting the methetrexate is frightening but so many of us have had little or no side effects, and if it works for you then getting your life back outways it by far! :)

    take care

  • Thankyou for your kind words of reassurance,it's helped me greatly.i will focus on the future as I just want my life back.you certainly had a tough time off it especially after giving birth u poor thing,but look at u now,amazing I'm so pleases for you.keep in touch xx

  • Thanks polly my crp is 21.5,so maybe the nurse will give me methroexate tomorrow do you think?i thought I had to wait for results to come back maybe I've got it wrong.all the negative sites had me thinking as I'm strong/positive In anti ccp I was doomed but I see this is not the case,everyone is different.all I think though as I'm in so much pain in such a short time,that it's really aggressive,but everyone on here is giving me fresh hope.thankyou so so much all of you xx

  • Actually I don't think Shell is sero negative with a high positive anti-CCP Polly but no matter. Shell - Polly and everyone here is right - MTX will hopefully become your friend quite soon and if not there are plenty of other disease modifying drugs to try. The best thing you can do is to read as much as possible on this site and Arthritis Research plus Arthritis Care - although in my humble opinion this site is the best for information and advice of course!

    Through scrolling through this site you will soon learn all the terms and treatments and read about the positive things and negative things that go with this disease - and there are some positives believe me. I've met some wonderful people on here and learned a lot about patience, living well and getting as much exercise as possible as well as seeing how courageous people are too and trying to follow their examples.

    I was diagnosed last November after 9 months of pain and have been on MTX and another disease modifying drug (DMARD) called Hydroxichloraquine since April. I am doing really well on both drugs I believe although they need some tweaking still possibly re dosages. I haven't had any really bad pain since early June now - and have many days where I'm pain free and wonder if it was all a huge mistake after all - and believe this is almost all down to the drugs. Good luck and welcome to the site. Tilda xx

  • Hi tilda,I was rf negative in may,I've just checked my results again,but in July anti ccp done by rheumotologist was strong/positive,I really don't know maybe I am positive now ??you have done so well,did you experience stiffness with the pain,my upper arms and shoulders are the main problem now,with stiffness in fingers too and right knee.pain free days wow !!!!!!! So so pleased for you.i will let you all know how I get on tomorrow xx

  • Yes I did get stiffness and still do in the mornings - especially my hands with take up to 30 mins or more to get moving (am writing this on my mobile with one straight finger!). So the stiffness hasn't gone away but the searing pain has and at worst I just get a mild ache now. My wrists were the worst but see okay now - its getting a little bit more achy and stiff because I took a break from one drug to see if it was causing widespread pins and needles but it wasn't. I also dropped back down to 15mg MTX because the higher dose made me too sick.

    We are all different and that one extra tablet (17.5) took me over my threshold somehow whereas others seem to be able to get up to 20mg or more without any mishap. I'm sure you will be fine and MTX is an amazingly effective drug for many of us although it can take a few months for it to work. Good luck!

    Tilda x

  • Was going to PM, but hopefully Shell won't mind a mini high jack of her blog while we tussle over definitions.....I've always been told that negative RF factor is called sero-negative RA, but weak or negative Anti-CCP is called just that (ie neg anti-CCP) so that can be clear which one is negative/positive since there are the different permutations. Have you been told different? (so sad that I've become an RA nerd...) Px.

  • Ha ha well the tousle continues because my RF is a low positive but anti CCP was negative a year ago. My rheumy diagnosed me as having sero neg RA - but it was his first apt of the day and he'd just arrived from Aberdeen and didn't have my notes! I queried this - was this because of the neg anti CCP because I did have a positive RF and he just said good point but it doesn't really matter it's RA whatever. I asked if this might mean my RA is less aggressive and he said yes and no - it might or might not.

    I researched these definitions prior to the consultation because I was worried about being dismissed. I read that if positive RF and/ or positive anti CCP then sero positive - if neg RF and positive anti CCP then the same applies. But I think my rheumy's point was what's in a name really? Some sero neg people have very aggressive RA and some people who are sero positive get their RA very well controlled more easily (presumably because they are more quickly diagnosed and treated?). Sorry for the red here Shell! Tilda xx

  • Hi Shell, nice to meet you but sorry it's because of arthritis.

    Hope your appointment with rheumys today go well. Hope you see this before you go .... take notes with you of the questions you want to ask - i.e.. absolutely anything you want explained, plus how things have been going. Plus you need an emergency number to be able to call her if you have more questions or are in need of help.

    All that being said, I've had RA for almost 20 years and boy was I frightened. My late Mum had been in a wheelchair for years because of RA so I had more reason than most to be frightened. I went onto Mtx. early on but not so early as RA is now being treated with it.

    OK, that all being said, I am still walking around (fortunately no wheelchair and fingers crossed it stays that way) .... ! My RA was caught early but not treated as aggressively as it is now. That's where anyone being diagnosed now has a much better chance of a normal life than my Mum did and to some degree even better than me.

    I have not found mtx. any problem, no more infections than anyone else. (I have always taken vit. C tablets plus omega 3 fish oil capsules). I was working full time, until I was made redundant 2 years before I was due to retire. Even now after being on Mtx for so many years I know it's still helping me.

    Let us know how you get on and 'chin up' we are all with you.

    Judi xxxxxxx

  • hi michelle ... youve already made a positive step my joining a the group .. youll never feel alone now .. ive only just joined too ... so my knowledge is limited ,, but if your anything like me .. after every visit to the gp or rheumy .. youve always a few questions you wished youd asked ... so here is a place you can find the answers ...

    good luck ..

    andy ..

  • I first suffered pains in my feet and hands and by the time I saw my GP the pain had dissipated. After several months I lost my temper and was asked if I had any worries! I continued to argue and he prescribed Valium. I told him what to do with the tablets and he referred me to a gynacologist as he thought it was 'women's troubles. I saw the consultant who said, despite the fact I was going through the menopause at 31, that hadn't caused the swelling and pain in my feet. He referred me to a kidney specialist He also said it was nothing to do with my kidneys but he was sure he knew what it was and referred me to a rheumatologist. By this time, nearly a year later I saw the consultant on a Wednesday and by Friday I had been tested, diagnosed, medicated and fitted with splints as, by this time I could only wear size 10 wellies because of the size of my feet and we had no door handles indoors as I couldn't use them. For the next 7 years I had ops. on my hands and feet and was surrounded by a collection of medical experts that have continued to give me a chance to live and not just exist. This was over 30 years ago and my relationship with them is longer than some marriages. While I was recovering from one particular op I was told about cod liver oil. I took a table spoonful every day and instead of collecting the wheelchair waiting for me I went on a climb just to prove how much better I was. There are really good teams out there and do not be put off b y people saying 'mt grandmother has that', a typical reaction from young people. I am now a grandmother and I have learned how to cope and be still active, whilst those people are just getting their first dose and are learning that RA should not be dismissed as an old peoples' disease. Good luck. (forgive some of the spelling!

  • Hi, I too had my first visit to the rheumy on Tuesday this week and (luckily) was diagnosed on my first visit. I first visited the doctor in October last year with sore balls of feet, big toes and index fingers but because my RF was negative, was told it was osteo, and take paracetemol as required. Since then moved house, changed doctor and excessive joint spread to all knuckles, all toes, shoulders and worst of all, wrists. Went to my new doctor who took one look at my hands and referred me to the rheumy. Waited 6 weeks for an appointment (on Naproxen during that time which helped alot). X-rayed on Tuesday and diagnosed. Going on mtx and the other one hy... something (can't remeber the long name). I was also given a steroid injection, which has not only helped alot with the pain, seems to have given me a lot of energy back too. Took ages to get to sleep last night - seemed to be buzzing - but at least it wasn't because of pain!! Keep positive and don't let it beat you - there are always alot of people alot worse off.

    I have been reading this site since my second doctor's visit but haven't yet contributed - I guess I didn't want to feel a fraud if it turned out I didn't have RA. As it turns out, compared with the long drawn out diagnoses I have read about on here - I count myself very fortunate.

    Helen

  • Yes me too,I have been diagnosed very quickly,referred w how in may and seen by a rheumotologist in July,and diagnosed last week.starting methotexrate Monday,wen do u starts?lets hope it really helps both of us.plse let me know how u r getting on.did u hav the anti ccp test?my dr was very thorough and tested for everything.nurse rung me yesterday saying blood test fine so starting methotrexate Monday x

  • Sorry didn't get back to you straight away, but I've been away for a fabulous long weekend. Haven't got a date for the mtx yet, but had a steroid injection whilst at the hospital and am back on the naproxen now - feeling pretty good at the moment as the pain has been considerably dulled and I've been able to do quite a lot of walking this weekend. The hands and wrists are still swollen, so obviously while the pain is controlled, until i get the mtx, the inflammation is not going to be dealt with. I'm just hoping I don't have a rough ride with the drugs, and that I'm one of the lucky ones....hope you are too.

  • Hi thanks for replying,really pleased you had a great weekend,makes you feel so much better dusnt it?i have just got back from a 2 week cruise and loved every minute !! I started meth this morning 15 mg,I had brekky then went to work for the morning,now home just chilling.when r u starting ur meth?hav ua had ur blood tests o make sure you can start with it?its all new to me and I'm like questions questions to everyone so I'm sorry if I keep asking stuff lol.My shoulder and upper arm pain is the worst for me at the minute,especially at night,let's hope the meth works for both of us.i have to have fortnightly injections for 6 weeks then if all ok monthly.plse keep in touch Michelle x

  • Hi Michelle

    I still don't understand all the different tests, bloods etc. I know my RF factor was negative, but the inflammatory markers in my blood were both well above normal. I had a blood test taken at the hospital that the rheumy said she wouldn't have expected the doctor to do, would that be the CCP thing? She also said that the RF negative was prognostic rather than diagnostic, i.e. it indicated that the arthritis was likely to be less aggressive. They did a chest xray, as well as my hands and feet, and I was told I was going to be put on mtx and hydroxy. I was then given a steroid injection, another naproxen prescription, and a pile of booklets and leaflets and I was sent on my way. I presume they will call me when I am to start with the DMARDS, which I have to say I'm not looking forward to. Hopefully the side effects won't be too bad. At the moment, I'm functioning quite well, the steroids certainly made a difference, and I'll quite happily have another when this one wears off! But I can feel everything in my joints - it's like it's loitering there waiting to come back with a vengeance if I forget my painkillers. The swelling in my knuckles and wrists is actually getting slightly worse, but because the pain has been surpressed, perhaps I am trying to do too much?

    Hope you cope well with the mtx, and take of yourself.

    Helen x

  • Welcome to you and all the others who have joined the group. We are a great bunch here and we are here for you. Moan,cry ,share anything good we won't put you down and don't feel you have to apolise as we have all been where you are at the moment. So don't be afraid to ask someone will be able to answer you. Sylvi.xx

  • I have only recently joined this site but the input from everyone is fantastic and will help you so much. The treatment of this disease has improved beyond belief in the 50 years I have had good old Arthur.

    Don't be afraid of taking methotrexate the benefits outweigh the side effects.

    As to regards increased infections I do take precautions if I know a child has chicken pox and have never had a problem. I am also on humira which I can only describe as a wonder drug!

  • hi i to have RA and had it now 2 years i to was in a lot off pain in the beginning i couldnt walk 13weeks i was put on methx 10mg weekly i have been fine but they are upping it to 15mg for the next 2weks then 20mg after cause i have inflamation in the blood i lol dream last night i lost all my hair so glad when i woke up it is hard but the drugs help i used to go swimming 4 times a week this is something i am going to start again hope u feel better soon xx

  • Hi Shel, I am sorry you have been diagnosed with RA. I have had Chronic RA for 25 years, I had various treatments over the years but the drugs around now are far, far better and so you, hopefully, will not get the horrible crooked joints that I have ended up with . I am on Embrel and apart from a couple of niggly little side effects have been fine. I have grandchildren and until march this year worked full time in an environment where I was in contact with many people and very rarely got as much as a sniffle. The main thing is mental attitude. I have never let RA rule my life, last year I was the oldest person (I was 60) to do the Extreme Aerial course in Sheffield - climbing over ropes and obsticles until I was 40 ft up and then jumping off relying on a rope to let me down gently. So as you can see it doesn't stop me. Just accept that you have got it and adjust.

  • Hi and welcome to the group, try not to be too frightened of all that you have heard and read about this disease, we have all been where you are and we have survived. We may all be in different throe's of our aches and pains, but each and everyone of us will be able to commiserate with you and know exactly what you are going through at the moment. Best of luck with your meds and look forward to hearing more from you.

  • ive been on methatrexate for 20 yrs and its heaven but had to take it 3 weeks before it started working

  • Thankyou everyone.ive been to see the rheumo nurse today,I've had my bloods done and got to wait for a call to say all ok,she gave me a prescription of methotrexate 15 mg and folic acid to start wasap as soon as results are back and are ok.she said I looked very well and most people on this drug tolerate it well,so fingers crossed.im much more positive today.she told me its not curable but is treatable.i feel very well cared for,by her and by you lovely people.i will let u know wen nurse calls tomo and tell you my next step.thankyou everyone x

  • Welcome shell and all others, like you my problem started in my foot, thought it was just muscle strain etc went on for about six months until my Gp did a blood test which showed inflammation. Started mtx didnt tolerate it then sulphasalazine didn't tolerate it and now waiting to see what happens next. It's not fun being on these drugs but I've had a lot of help from everyone on here to cope with it all. I am very

    hopeful that I will soon find the right medication and turn back into me again. It's only been 9 months so early days. Good luck and stay positive that's what's important.

  • Hiya

    Sorry I'm just joining in on this blog, welcome, I have sero negative anticcp RA too. Cant add to much to all the lovely blogs above, so good luck with the mt8 xxxxx Axx

  • Hi welcome to the group and please dont worry (I know it is easier said than done). I was diagnosed with RA four years ago and anti cpp positive four years ago,I had a CRP level of 46. I was so scared at first especially when my Rheumatologist said that being anti cpp positive was an indication of possible severe disease, however I later found out yes it was an indication of possible severe disease if it was not treated quite aggressively with the right medication. Four years down the line I am so much better, and I certainly do not have signs of severe disease. Yes the first 18 months was hard for me (and everyone is different), but with the right medicine I improved substantially, I feel a lot fitter now than at diagnosis or indeed before diagnosis. I take methotrexate hydroxychloroquine and sulfalazalazine. If I get a flare up I can have a steroid injection. All these medicnes sounded scary to me at first but they are well established medications and they have got my RA under control.. The most important thing I learnt was to listen to my body, pace activities as best you can.

    annie7

  • annie you are the first person that i have spoke to on here who is on the same 3 drugs as myself at the same time. My mix is 20mg mtx on fridays and 4 sulfazalazine/ 2 hydroxychloroquine daily and folic acid, tramadol and naproxen. Shake rattle and roll.

  • and that's my cocktail too....tho' 5 sulpha now. Polly

  • I am on the same. I also take ibrufen and folic acid(plus 3 for hypertension and palpitations)

  • Hi,

    RA is a terrible disease, and I have had it 16 years. But the wonderful medicine they now have compared to years ago is wonderful. I am on Remicade infusion every 7 weeks. It is working really well, and I have agressive RA. Good luck it can and probably will get better. Tricia

  • Hi

    sorry to reply so late to you - have just read your blog and wanted to welcome you and hopefully add some re-assurance.My RA started in the ball of my foot in April 2011 and I also thought it was due to wearing shoes with heels for ballroom classes! After several months where I had intermittant pain travelling from joint to joint I was finally referred to a consultatn In Jan 2012 - she immediately ordered a anti CCP which came back positive. Like you I was terrified, but now after nearly 5 months on Methotrexate I feel so much better, joints much less stiff and painful. Feel like I am getting my life back AND have had virtually no side effects. So try not to panic too much (know it's difficult) take as much help from others as you can, rest when you can and just take each day as it comes. PS be patient with the MTX it can take a while to work - maybe ask for steroid injection to tide you over if you're in pain.

    Caroline

  • Thankyou so very much,I'm amazed how many people have told me about ball of foot pain,I'm really hoping the methoextrate agrees with me.how long was it before u started to feel a bit better? Xx

  • Thankyou Caroline, very positive story to read :))) I'm taking 2 zapain and ibuprofen in the morning and I cope with this fine.how long did it take the meth to work?i am very anxious but will do anything to get my life back.x

  • Hi

    after about 8/9 weeks I noticed improvement and was able to cut down on anti-inflammatories. Now after 4 and a half months, instead of 3 anti-inflammatories a day I am only needing to take 2/3 a week plus don't feel tired any more. Still have bad days but they are not very often and not as bad as they were before.

    Hope you get on OK.

  • sorry to overtake your blog with Barry Manilow stuff, see what happens here lol Axx

  • Feel free lol xx

  • Thankyou everyone for all your advice and reassurance,my rheumo nurse has rung and all my blood tests were fine so I'm starting 15 mg of methotrexate Monday.could anyone tell me how many tablets are in a prescription?will I be paying for a new prescription every week?only asking as she said when u come for a repeat blood test in 2 weeks I will send a new prescription out? Thankyou again all of you,I am much more hopeful and optimistic since joining you all.i am going out tonight to have a few malibus lol as its going to have to stop come Monday !! Lol x

  • Some people get a few months, but my doc will only give me 4 weeks supply of MTX at a time. Look into pre-payment prescription cards. I pay £104 a year, in 10 direct debit payments of just over £10 each and then that's it. So if you have a couple of different things then it's worth getting.

  • wow, had to pop in to get you to the 70 replies mark!!! isn't that a record :)

    and of course, hope it all went well with your first dose!

You may also like...