Hello

Jam84
Jam84 Member Posts: 6
edited 19. May 2017, 10:03 in Say Hello Archive
Hi,

Just joined. I am 32, have been diagnosed for 6 years. Was on steroids for most of the last 6 years along with Sulfasalzine but in December came off the Steroids, things have deteriorated since then. I thought I was coping with having arthritis but obviously the steroids were doing a good job and as I can't stay on them I'm now getting the full impact. Just want to talk to people who share the same problems really.

So, hello.

Thanks
James

Comments

  • moderator
    moderator Moderator Posts: 4,086
    edited 30. Nov -1, 00:00
    Hello and welcome to Arthritis Care Forums, Jam84, from the moderation team.

    I am very sorry to hear you are struggling since you were taken off steroids. 6 years is a long time to be on them and although they do help a lot for some people, there are risks too.

    I hope you have an appointment due with your rheumatologist/ nurse so that you can discuss your deterioration with someone soon.

    I don’t know whether it will help, but I have attached a link to our managing pain leaflet:

    https://www.arthritiscare.org.uk/do-i-have-arthritis/publications/217-managing-pain

    As well as information about types of medications:

    https://www.arthritiscare.org.uk/treatments-aids-and-equipment/medication-for-your-arthritis

    As moderators we are here to help with any problems you may have using the message boards so feel free to send us a message if you need to.

    I look forward to seeing you posting on the boards.

    Best wishes


    Ellen
  • dreamdaisy
    dreamdaisy Member Posts: 31,558
    edited 30. Nov -1, 00:00
    Hello, it's nice to meet you but I am sorry you have had to find us. it sounds as though you have one of the many auto-immune kinds of arthritis (I do, in my case psoriatic) and my first med was sulph. This was back in 2002 and since then I've tried many more, always in a combination. Has your rheumatologist ever suggested your trying other medications apart from the sulph and steroids? Yes, they are 'effective' but they only mask the underlying trouble. I wish you well. DD
    Have you got the despatches? No, I always walk like this. Eddie Braben
  • Jam84
    Jam84 Member Posts: 6
    edited 30. Nov -1, 00:00
    Yes mine is psoriatic also. They are currently checking if Methotrexate would be a more suitable option as seems I have become dependent on the steroids and the Sulph aren't doing the job. Although I'm not keen on Methotrexate. Had steroid injections directly into my shoulders a couple weeks back which helped for a week or so but now back to usual with limited mobility and severe pain. Have Ultrasounds and MRI's tomorrow and Thursday and some further checks on Monday. I'm honestly just thinking to hell with the long term consequences of steroids as they are the only thing that works but I understand I can't stay on them.
  • stickywicket
    stickywicket Member Posts: 26,271
    edited 30. Nov -1, 00:00
    Hi James and welcome from me too. I think most of us with an inflammatory form of arthritis (mine's RA) have been on oral steroids at one time or another. They can perform a useful function especially when people are newly diagnosed and waiting for their DMARDS to kick in. Six years, however, is quite a long wait.

    I am fortunate in being of an age where I don't have to work and I feel for those trying to hold down a job with arthritis. For me, though, steroids would never be a permanent solution. They are far too risky long term.

    As DD says, many of us take two or even three DMARDS. I use meth and hydroxychloroquine and they've done an excellent job for me for years. Of course there is usually a 'bedding in' process while we wait to see if they will work and, after so long on oral steroids, you will probably struggle to get off them because your adrenal glands, which normally produce cortisol, will have long decided that they needn't put much effort into this seeing as how the steroids are doing their job for them. For me, though, the struggle would be well worth it.

    I hope you can work out a solution which you'll be happy with. Here is some useful info on the pros and cons of steroids by the trustworthy site ARUK

    http://tinyurl.com/lcsu2oa
    "The deeper sorrow carves into your being the more joy you can contain." Kahlil Gibran
  • Jam84
    Jam84 Member Posts: 6
    edited 30. Nov -1, 00:00
    Thanks, I will have a good look at this and glad to here Meth does a good job for you. I was on the Steroids so long as I got diagnosed just after getting married and was asked if I was family planning any time soon, which we were, so couldn't start on the Sulph due to causing fertility issues whilst on it. 2 sons later and now time to just rely on the Sulph.
  • stickywicket
    stickywicket Member Posts: 26,271
    edited 30. Nov -1, 00:00
    I see. You had a good plan and it worked. Excellent :D

    Now I think you must think of yourself and, indeed, your long-term health as it will be better for the whole family if you are in good nick.

    Don't just think in terms of one DMARD, though. Two, or three, are often necessary but, if they work, what's not to like?

    I hope the scans went well.
    "The deeper sorrow carves into your being the more joy you can contain." Kahlil Gibran