Thoughts on treatment options please!

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Hello,

I recognise how lucky I am compared to so many of you so bear with me! I have been under the rheumatology depratment for two years following swellings in some of my toes and fingers and other sites over the last 4-5 years. These have happened at different times and after a few months the swelling has reduced in each of them significantly but I am left with slight pain in these areas. The swelling that was actually occuring at the time of my first appointment with the consultant was my index finger which he has described as sausage finger because it was the whole finger that had swollen. Slight damage was visible on x-rays of the finger two years ago and my most recent xray showed "subtle" further damage. The x-rays that were taken of one of my toes and ankle haven't shown any damage. I also have CFS/M.E. and possible fibromyalgia and the rheumatologist said something along the lines of me having several pain conditions (hooray!) However he hasn't been able to definitively diagnose me with any arthritis condition, he thinks it might be psoriatic arthritis - but I haven't (and none of my family has had) psoriasis. He wanted to put me on methotrexate two years ago but I felt I wasn't experiencing significant enough pain to go down this route so we compromised on steroids to reduce the swelling. However he is now talking about methotrexate again as his ideal option or sulfasalazine because he wants to minimise the potential damage.

I understand that research suggests that early treatment is the best option for damage limitiation BUT I feel as though the drug options are quite heavy duty when 1) I don't have a definitive diagnosis, 2) my pain is comparitively extremely low level (I don't need to take pain killers because it is only when I use the finger/arm etc. rather than constant) 3) I haven't had any non drug interventions like exercises to maintain mobility 4) the damage has been "subtle" over a two year period.

I'd be really interested to hear what you guys think, as people who have experience of all this....it just feels like a hammer to crack a nut and will leave me nowhere to go except more drugs IF the damage gets any worse...but I'm aware that I might just be being resistant because of all the potential side effects.


Any thoughts gratefully recieved!!☺️

Comments

  • chrisb
    chrisb Moderator Posts: 680
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    Hi @masonsgrange

    Welcome to the Versus Arthritis forum. 

    I see from your first post that you’ve had swelling in your toes and fingers for some time and as a result have undergone rheumatology consultations for the past two years. You also have CFS/M.E. Your GP has not been able to a definite arthritis diagnosis but wishes to prescribe methotrexate. You’d like to hear what others with similar symptoms think you should do based upon their own experiences. 

    Well you’ve definitely come to the right place to share your concerns and gain some relevant feedback. 

    If you haven’t already visited our website then the following links may be of interest:



    I’m sure that you will receive some useful input from forum members. 

    Best Wishes

    ChrisB (Moderator)

    Need more help - call our Helpline on 0800 5200 520 Monday to Friday 9am to 6pm

  • Tish87
    Tish87 Member Posts: 25
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    I have psoriatic arthritis, diagnosed in 2019 and at the time it was just in my feet. Had the same swollen digits that u described and that’s typical of psoriatic arthritis, so started on sulfasalazine and it worked great. After 6 months I came off to get pregnant and due to the surge in hormones etc I was fine without my meds but was told to expect a flare up after baby was born, was fine with this cus I knew I would just go back on the medication. Fast forward to Feb 2020 and I had my little boy and in the few blurry weeks after I started to notice the pain creeping in. Unfortunately for me Covid also hit the country and they wouldn’t give me the medication as it works on reducing the immune system so was too risky! So after a few months of it getting worse and effecting more and more joints and having 2 falls they caved and started me back on sulfasalazine for 6 months but it was useless this time, switched to methotrexate and some oral steroids and it started to work a little but now another 8 months on I’m still flaring and my disease is just spreading like wildfire! I’m now waiting to get biologics but have been warned it will take a while to get funding approved!


    my advice to u is to act now before u get worse as u will need a stronger treatment plan if u continue to leave it. Hopefully u get a few opinions to help u decide what to do :)

  • masonsgrange
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    Hi there, thank you for this and sorry you are having such a tough time of it. That is really useful and you've prompted me to have a look at other posts relating to PsA. I think I'm a bit in denial - especially because I don't have that many of the symptoms!

  • masonsgrange
    masonsgrange Member Posts: 4
    edited 10. May 2021, 09:10
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    Oops - accidently posted second one !! 😂