fionaLondon Member Posts: 7
edited 7. Jun 2012, 14:20 in Say Hello Archive
I'm Fiona and was diagnosed (early) in January with severe RA, anti CCP of 1100. I started on Methotrexate in Feb and am on 12.5mg and gradually increasing. I've also started taking Hyroxycloroquine twice a day and am still on NSAIDs.
My RA is very active in my hands and wrists but not so bad in my feet and knees since I started taking the drugs. I'm worried it's taking so long to get under control (but know I can be impatient!!) as a lot of sites talk about the damage being done in the first 3-4 months
I had cancer 3 years ago and, strange as it may sound, I found that easier to deal with as they took the tumour out quickly and that was that, it wasn't coming back. This is something I can't see or get rid of and I'm scared about how bad it will get
I'm 48 and work in a senior role and need to carry on working for as long as possible. My company are sympathetic but they don't really understand what it does to you. When you say you have cancer the reaction is v different, more emotive I guess but I think there isn't much awareness of the effects of RA and how random it is.
I've never joined a discussion forum before but would appreciate some advice or perspective on how I'm feeling


  • dreamdaisy
    dreamdaisy Member Posts: 31,520
    edited 30. Nov -1, 00:00
    Hello, it's nice to meet you and I am glad you have found us. Firstly congratulations on getting better after cancer. There is no doubt that to have a version of that disease is not a good thing but there are steps that can be taken to deal with it - permanently - and that is wonderful. There are one or two other people on here who have survived cancer so you are not alone in that. Arthritis, however, is a whole different ball game. The meds inhibit the progress and hopefully reduce the possible joint damage but that's it. There is no cure (although surgery can become an option and make some difference) and it is impossible to estimate what will happen on the future. We may share similar labels but every one's version of arthritis is unique to them.

    People who do not have it do find it hard to understand. A good explanation for how it affects one is to be found in the Spoon Theory, another one is about learning to live with a gorilla in the house. I don't know what sites you have been looking at but I think that joint damage can take a while to occur, my knees and ankles are the most damaged joints I have to date but that has taken years and years to happen. This was the first forum I joined and it came as such a relief to find others in a similar boat to me. We are a knowledgeable and informed bunch of arthritics, we are also very supportive. The LWA part of the forum is where we deal with the nitty-gritty of life with arthritis, meds, docs, appointments, jargon etc, the rest of the forums are self-explanatory. Stick with us girl, we'll see you through. I wish you well. DD
  • stickywicket
    stickywicket Member Posts: 27,429
    edited 30. Nov -1, 00:00
    Hi Fiona. It's good to meet you but sorry that you had to find us.

    I have RA too and have also had cancer (breast in my case) but that was about 20 years ago. I do understand that there is a tremendous surge of fellow-feeling for a cancer sufferer whereas arthritis is simply perceived as something that one has to live with rather than something that can kill.

    It's good that the meds are starting to help. I wouldn't assume at this stage that they won't help the other areas. Hopefully the increased dose will reach those too. If, after a few weeks you feel this isn't happening - or earlier if you can't bear it - ring your rheumatology helpline for advice. They may give you a steroid jab to tide you over. Meanwhile, try not to worry about damage. (Easier said than done, I know.) Yours sounds to have been caught pretty quickly by some standards and stressing out (which we all do at times) just makes it all worse. Arthritis loves stress :roll:

    It might help is you downloaded some of AC's publications and gave them to your work colleagues to read. That seems to have helped a few people to get more understanding at work. Also, if you google 'The Spoon Theory' it is a very valuable tool for getting over to others the sheer exhaustion that can affect some arthritic days but not others.

    You'll find us a welcoming lot but more people hang out on the Living With Arthritis and Chit Chat forums. I hope to see you around. Just join in anywhere.
  • clanckyclara
    clanckyclara Member Posts: 32
    edited 30. Nov -1, 00:00
    Hi Fiona,
    Welcome. I have only just joined the forum myself so am a bit of a newbie here although I have had RA for about 14 years.
    I understand totally how you feel about your diagnosis and the prospect for the future. I had was in the process of following a new career path following returning to study to do a degree and I was very frightened that all my plans for the future would be wiped out.
    It is such a difficult thing to predict the effects of RA as it can differ so drastically from person to person, as can the rate of it's progress.
    I do believe that, whilst none of us like having RA, many of us learn to adapt and adopt different strategies to cope with it (although not without down times). Arthritis Care run some great workshops to support that and it's worth checking to see if there are any in your area.
    I am not going to pretend that I didn't have to make changes to my plans for the future but I managed to achieve more than I first thought possible by being inventive and choosing different paths.
    It is difficult to get people to understand how the condition affects you on a day to day basis. People understand cancer but cannot measure or empathise with your pain and fatigue when there is nothing to see.
    I can only say that in time and through various conversations my employers came to see how I was trying to do as much as I could without letting them down and as a result, were very adaptable in my contract.
    Keep talking to them and build up your relationship with your specialist nurse - tell them how important it is to keep working.
    Your fears are understandable and I'm sure that you will get great support from this forum.
  • frogmorton
    frogmorton Member Posts: 28,543
    edited 30. Nov -1, 00:00
    Hi Fiona

    lovely to meet you :)

    You are no longer alone. You have us lot to talk to and for a novice to forums you are doing brilliantly :D

    Ask away anything and we will do our best to answer, we are also pretty good at having a laugh and distracting each other. We do a good job of supporting one another too when things are not so good :?

    Hope to see you around on the other forums :)


    Toni xxx
  • Colin1
    Colin1 Member Posts: 1,769
    edited 30. Nov -1, 00:00
    I think DD and the other guys have just about covered everything so ill just say Glad to have you aboard and hope to catch you round the Forum