New User: Rheumatoid Arthritis

Sharney7
Sharney7 Member Posts: 7
edited 21. Aug 2019, 04:58 in Say Hello
Hi everyone, my name is Sharne and I'm 33 years old but was diagnosed with RA 10 years ago at the age of 23. I was also diagnosed with Lupus at this same time.

I remember how it all started as if it was yesterday, I had quit smoking (which can be a lifestyle change that can bring out the RA) and under a lot of stress personally. It started with a pain in one wrist for a few days which then moved to my other wrist for a few days then to my knees and ankles. After a few weeks of this I knew I needed to go to the doctors where they believed I had a type of arthritis but wasn't sure exactly what one. After blood tests they realised it was RA and after I requested a blood test for Lupus and that also came back positive they then referred me to a Rheumatologist. Within 3 months of the first symptom not only did I have a diagnosis but I had deteriorated so badly I was unable to do anything for myself. I had the arthritis in all my joints and the pain was unbearable. I couldn't wash or dress myself or bath myself, I could barely walk or do much of anything. Luckily within the next 3 months I was on medication that worked and I was able to live a relatively normal life and it went on like that for 6 years with the odd infection here and there due to the low immune system brought on by the medication but everything was bearable.

Then 3 years ago my consultant decided to to change my meds for no particularly reason and everything went down hill from there. Within 3 months I was again bed ridden in excruciating pain with the slightest movement and unable to do anything for myself. All my joints were inflamed with my inflammation levels at 120. I then got lost in the system for 3 months, then was put on a high dose of steroids for a year and a half while they tried to find a other medication that worked. Finally I asked to be out back I the medication I was on originally as it worked and they agreed so things started to get a little better. The problem was that they left me without medication for so long that it damaged some of my joints and also caused problems in my right lung, so I have not got back to where I was and doubt I ever will now. I can no longer work which up until 3 years ago I was able to work full time.

I knew that the arthritis would change my life but it's only really the last 3 years that I realised how much and I'm still trying to come to terms with this and struggling with what my purpose in life should now be.

Comments

  • moderator
    moderator Moderator Posts: 4,088
    edited 30. Nov -1, 00:00
    Hi Sharney7,

    Welcome to the forum, so you have managed with rheumatoid arthritis and lupus for 10 years, 7 of them with mostly good health. It seems very strange that your consultant decided to change your meds, well done for requesting to go back on your old meds and I’m glad thing are now improving a bit.

    All the changes you have endured have thoroughly shaken you and they would me too, especially as you are facing up to changes in your lifestyle. Allow yourself a little time to adjust and to question your health team to find out exactly what you can expect to improve about your health right now so you have as much knowledge as you can.

    You might want to chat to our helpline team - they are open 9.00am - 8.00pm weekdays on 0800 520 0520

    Take care
    Yvonne x
  • dreamdaisy
    dreamdaisy Member Posts: 31,557
    edited 30. Nov -1, 00:00
    Hello, I have psoriatc arthritis, osteoarthritis and fibromyalgia. I began the first back in 1997 (I was 37) then had my first meds in 2002; it was finally accurately diagnosed in 2006 which changed nothing. The OA was diagnosed in 2011 and the fibro in around 2012. The only DMARD I haven't tried is hydroxycholoroquine. None have relieved pain, including the NSAIDs and pain relief, and I am now plodding along on injected methotrexate and humira.

    My hospital made the unilateral decision to change me from humira to its bio-similar imraldi and that has not worked for me. I often say that yes, I have a disease but I am not ill because I don't think I am: I am in pain but I feel reasonably OK within myself, well I did until the imraldi. :lol: Back in July I managed to see my consultant for the first time in over two years and she immediately switched me back to the humira which I resume next Tuesday. It's been a grim few months and I am hoping (but not too hard so as to avoid disappointment) to return to the giddy heights of what I term 'moderately grotty'. I have been severely grotty for a few months now and have had enough.

    PsA damages the joints in a different way but any form of arthritis is pernicious in what it does. I was always a candidate having been born with auto-immune nonsense (eczema) and developing asthma when I was seven, all in the days before steroid creams or inhalers so that taught me some valuable life lessons for coping with the current dross. I am now 60, retired and content with my lot. I am married, deliberately childless (pass this stuff on to another unsuspecting generation? I don't think so) but freely admit it is all easier for me because I have never been well. You cannot lose what you never had, this has to be so much harder for those who are coming at this from a healthy background.

    I hope you find the forum to be of interest, we all get it because we've all got it. DD
  • stickywicket
    stickywicket Member Posts: 26,360
    edited 30. Nov -1, 00:00
    Hello and welcome from me too. You have had a rough ride, haven't you? I've had RA since I was 15 (I'm 73 now) but have never been bedridden with it even in the early years before DMARDS were on offer.

    I think it's unlikely that stopping smoking caused your RA though it's quite likely that smoking itself was a contributory factor. You might like to read this:

    "Seventeen percent of the RA patients smoked in 2010 in this large Swedish RA cohort. Stopping smoking after onset of RA did not change the poor prognosis of smokers with RA, but all RA patients need to stop smoking because of the high risk of cardiovascular mortality and morbidity and the association of smoking with vasculitis and noduli in RA."
    https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3480711/

    You clearly didn't need the extra stress of being taken off a medication which worked for you (Which one?) and it's good that you're now back on it.

    Life with arthritis has many twisty, turning paths. I've always found the key is to take up something fun and interesting for everything I had to give up. I did Riding for the Disabled until my knee revision. The surgeon got a bit anxious about it so I had to stop but I remained on the committee and regional committee. Voluntary work is always in demand with all sorts of charities. That might be a way to go for you. Good luck!

    "

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