1. Community
  2. Bones, joints and muscles
  3. Rheumatoid Arthritis

Just diagnosed with RA

Posted , 9 users are following.

anthony53598
anthony53598

Hello to everyone on here, i was last week diagnosed with RA after 7 months of my gp treating me for tendonitis and me taking 6 co-codamol a day i asked him if i could see a rhuematologist and did so just before christmas and now! BANG! i got the blood test results, that i have RA and extremely high ccp levels but negative for ra factor, and have started taking methrotrexate and folic acid tabs, i am a gas main layer, (the dig up the roads type) and not sure what is in store for me now, as i am struggling with my heavy load job and feel its just a matter of time before i can no longer do it, i have read up as much as i can but am feeling a little bit stunned by the news, and have joined for some help and advise from fellow sufferers, any advise welcome,, thankyou.

 

0 likes, 21 replies

21 Replies

Next
  • jo17130
    jo17130 anthony53598

    Posted

    Welcome to the forum! I've found it a useful place to get advice and support - just remember everyones journey is so different with RA! I'm about 6 months on from where you are. I too have a high ccp and am negative for RA factor. Been taking Methotrexate and hydroxychlorquine, plus naproxen, paracetamol, codine and folic acid for 6 months now - seen some improvement but not enough for my liking! You might find the meds work within 6 months and all is fine, you might find - like me - that they'll need to do some tinkering about until they find the ones that work well for you - could take up to 2 years or more, I've been told as they have to wait to see if things change and that can take 6 months or more. Basically, its a long journey so best buckle up! I'm lucky in that my job is mainly computer based, but it does take me all over the country (and sometimes to different countries too). The travel is tiring for me at the mo so I've had to ease back a bit which is frustrating. Have you go good family support - that can make a big difference too. Completely understand the stunned reaction - and only to be expected. Keep well and hope you are one of the lucky ones that hits on the right meds straight away!
    • anthony53598
      anthony53598 jo17130

      Posted

      Hello, and thankyou for your help and advice, it sounds like we are all on a journey into the unknown,, i seem to spend my days working hard and my evenings and weekends recovering from the pain, but i live alone so it doesnt really affect anyone else, and i just make excuses not to go anywhere so i can rest my arm and legs ect,, not good i know, but didnt know what else to do, i live in a village 27 miles from the nearest family member so now would maybe be a good time to think of moving nearer to my family in case it all goes pear shaped and gets worse, as i seem to be losing the movement in my left hand, and just hope something works for me before this thing eats me from inside out! ha ha. so how do you cope? do you find you are using leisure time to rest your joints and do your hands and feet swell up and get really painful to the extent that fingers cannot be moved at all, then as if by magic it all goes normal again?

       

  • bob_2020
    bob_2020 anthony53598

    Posted

    Where you gettin ur pain anthony
    • anthony53598
      anthony53598 bob_2020

      Posted

      Hiya Bob, thanks for the relpy, i was a bit taken aback by it all,, i have been in lots of pain recently ,, my hands and fingers were so swollen and painfull i could not use them, the my right shoulder was so painful and i could not move my arm at all and  i ended up at the a& e as my firm thought i had dislocated my shoulder doing my job, then a week later it was all normal again, then it was my left leg!!! ha ha, i didnt know what was going on,, and my gp just kept saying it was tendintis, and giving me more pain killers, tramadol co-codamol and diazipam, it all made for a pleasant weekend but did not sort anything out, now my pain is just in my wrists and hands,, the left one i am losing the use of very fast,,

       

    • bob_2020
      bob_2020 anthony53598

      Posted

      Mines is in my hands and wrists as well anthony my right hand is swollon none stop i was diagnosed in september got my methotrexate put up from 15mg to 20mg..its always there now i could not work have serious back problams as well how you finding taking the metho powerful drug mate some people are ok with it others feel sick and have to rest up day of taking them..sound by the work you do its going to be more difficult hope you manage as well as you can buddy but having RA can be a hellish thing
    • anthony53598
      anthony53598 bob_2020

      Posted

      Hiya Bob, sorry to hear you are suffering so much pal.. but the consultant did say she was shocked to see that mine is either in the left side or the right but never the two sides of my body at the same time, so if my right hand is sore my left one will be fine, ect,, and yes you are right the day after taking the medication i was getting very confused and was driving on the m6 motorway and suddenly i didnt have a clue where i was supposed to be going or even where i was!! i was just driving, then it happened on the country lanes near my house,, i got lost, but it seems to have calmed down a bit now, but no other side effects other than that day, and i find every one is clueless to what we have,,, just like i was, if someone would have asked me a few months ago what rhuematoid arthritis was i would have said,,, oh well thats what the old folk get when they get old,, i would have been very wrong!! so having this forum is the first chance i have had to talk with people that understand what is all about and have enjoyed the chats with you and several others today,, thanks!

       

  • leslie02225
    leslie02225 anthony53598

    Posted

    Anthony, welcome, I was diagnosed 12 months ago and it seemed that the methotrexate was doing nothing for about six months then I started to feel completely normal again, no pain at all and I have been able to go back to my hobby of silver and gold smithing (making and assembling tiny ring components) My advice to you is 'Don't do anything that is irreversible and final'. Six months from now you could be feeling completely okay again and regretting things done and decisions made in haste. Give it time and in the meantime just try not to overdo anything. All the best, Les
    • anthony53598
      anthony53598 leslie02225

      Posted

      Thankyou very much for your reply and advice, i will take it all on board,lol

  • Jan999
    Jan999 anthony53598

    Posted

    Hello anthony. Sorry to hear your news but I know how you must feel. It took two anda half years for me to get my GP to take my joint pains seriously and then she was reluctant to refer me to a rheumatologist. I have a rheumatology appointment next month. It's hard to say how it will affect your work because everyone reacts differently. All you can do is keep taking the medication and see how it goes. There are some great people who post on this forum who will I'm sure have some good advice for you.
  • AnnaDevs
    AnnaDevs anthony53598

    Posted

    Hi Anthony - I'm really sorry to hear that you have been diagnosed with RA.  I was diagnosed about 3 years ago.  Like you, it came as a massive shock! It began one morning when I woke up, I could not stand on my right foot it was so painful.  I thought I'd been bitten by an insect while I slept. The pain lasted about 3 days then disappeared.  About 3 weeks later I had exactly the same pain ........ in the other foot.  I went to the doctors and they said numerous things could be wrong (even wearing the wrong footwear!!) Eventually I was diagnosed with RA and prescribed medication.      What I have found fustrating is that people don't seem to inderstand how painful it can be and how it can hinder your everyday life - I find opening bottles and jars a major task and sometimes getting dressed.  Also, it's frustrating as one day it can affect your hands and wrists and the next it can affect knees and feet instead! I have had some steroid injections which have been wonderful but I am not aloud to have anymore at the moment as the doctors have said there are side effects with having too many.  About 6 months ago my knees balloned and were so big and sore I could hardly bend them.  I went to my Rheumatologist and they drained fluid and injected steroids directly into the joints and they have been wonderful since (although I know this will not last - but hey, 6 months pain free in my knees!!) 
    • anthony53598
      anthony53598 AnnaDevs

      Posted

      Hello Anna, WOW! you sound like you have been through the wars,, i did have a few injections a few years ago in my shoulders as x rays showed wear and tear from my job, and they helped then, but like you this thing came about so fast, i could set off for a day out feeling on top of the world,, then a few hours later was in so much pain i was struggling to change gear in my car, very odd,, but gp just kept saying its ok its just tendonitis and it will go,, here have some more co codamol, but in a sense i feel a bit better knowing what i have,, then got that im all alone in this feeling!!! but i know i am not and will get my head round it all and hopefully carry on with my job as its all i know and i would not like to change my jobs, as i usually have a smile on my face at work but now i think its more of a gritting teeth smile,,ha ha, anyway thankyou very much for sharing your experiences with me and the advice you have given me i really do appreciate it..

       

    • Jan999
      Jan999 AnnaDevs

      Posted

      Anna you are right when you say people don't understand how painful RA is. People often think you have a "touch of arthritis ". But it's not and some days I can hardly walk such as today when I was trying to cook Sunday lunch. Hobbling around nobody noticed! You have certainly been through the mill Anna. 
  • slm222
    slm222 anthony53598

    Posted

    Hello Anthony,

    Welcome! I'm sorry to have to welcome you to this forum because it means you have the ugly RA beast. I was diagnosed last summer after a year and a half of my GP treating me for 'tendonitis' as well. I was so frustrated. My RA factor was slightly high but he didn't run the ccp test. He finally sent me to a Rheumatologist who ran a lot of blood tests and I had an even higher RA factor than the year before (it had doubled) and a ccp level of 250. I was put on Leflunomide (Arava) 10mg and just recently was increased to 20mg. The foot pain is mostly gone but my hand and wrist pain continue. My doc says it can take up to 6 months for the med to really give me the full affect, but I'm getting concerned because I've been on it for 4 months now and it's not helping my hands and wrists much. I too worry about my job. I work as a registration clerk at a hospital which means I am on a computer all day long.

    As others have mentioned, it's a different journey for everyone, but at least here you can get support and know that people understand your pain. It's very frustrating when people think you 'just have arthritis' and can't see the pain, and for me at least, the constant fatigue. I wish you well and hope that the meds work well for you!

    • anthony53598
      anthony53598 slm222

      Posted

      Hello sue, thanks for your reply, yes it is a strange illness we have, and not a nice one and yes your right no one understands it,, so maybe it should be called something different and have the arthritis bit taken out of the name, as folk think its a old peoples bone ache type of thing,, you say you have pains in your hands and fingers,, me too,, but my little trick when one gets sore is to hold a tennis ball in the sore  hand then pull a sock over my hand,, that way my fingers cant bend in or out while i am asleep and wake me up all the time in pain,, sounds silly but it works for me,, see i am learning already,, ha ha, take care Tony.

       

  • anthony53598
    anthony53598

    Posted

    Hello again to everyone, i hope evryone is managing ok and keeping relatively pain free, i thought i would just update my condition, the medication i am on(methrotrexate) i have been taking for 3 weeks now, and know it may be a while before i see any results, taking it has been fine, no side effects, really, well the day after i take them i feel like i have been nailed to the carpet,, and a bit of confusion thrown in, but not too bad really (except the day when i forgot where i lived),, recently i have been getting lots of pain in my shoulders while at work and have tried to work through it and have managed to keep it to myself as i have not told my workmates, and have had to take co-codamol to get me through the day, which i  am not allowed to take at work as we are ramdomly drug tested and the codeine in my system would get me suspended from work! so i think the time has come to come clean about my illness which will probably result in me having to give up my job,  unless i can get some different pain meds that dont contain opiates, so if anyone has any advice on pain management for this condition it would be appreciated, to help a stubborn man who has worked all his life and refuses to give up,,,, thankyou.

     

    • bob_2020
      bob_2020 anthony53598

      Posted

      So sorry to read this anthony not really sure on that one at all wot other drugs may help you for your pain at work i took my MTX yesterday i am up to 20mg 8 tabs never look forward to a monday taking them has to be done tho mate its only to benefit ourselves i guess...tho others can have side effects i am like you not really to bad with them you would be better explaing wot your sayin about the co codamol and to see if theres something else you can take while you manage to work its a bummer of a illness anthony hope you get something and your not in to much pain at work hang in there best you can mate tho its very diffucult i can imagine at times cheers buddy ...
    • Jan999
      Jan999 anthony53598

      Posted

      Hello anthony. I've recently bee diagnosed with RA and was having problems with all the pain. My GP has prescribed me a non opiate drug called Nefopam (also known as Acupan). It is given routinely to post op patients so it is a good analgesic. I find it works ok for me and I've cut down my codeine. The good thing is it's not an opiate and not addictive.
Back to top
Next

Report or request deletion

Thanks for your help!

We want the community to be a useful resource for our users but it is important to remember that the community are not moderated or reviewed by doctors and so you should not rely on opinions or advice given by other users in respect of any healthcare matters. Always speak to your doctor before acting and in cases of emergency seek appropriate medical assistance immediately. Use of the community is subject to our Terms of Use and Privacy Policy and steps will be taken to remove posts identified as being in breach of those terms.