Sjogrens and arthritis

Vegagirl63
Vegagirl63 Member Posts: 2
edited 15. Jun 2017, 05:27 in Say Hello Archive
Hi all newbie to this forum, I have sjogrens which was diagnosed 5yrs ago and seronegative rheumatoid almost 4yrs now ,struggling at moment as my medication ,methotrexate 25mg, hydroxychloroqine and multiple analgesics are not really helping my pain and my rheumy says at the moment I don't tick all the boxes for biologics?.
I don't really find my work colleagues understand how fatigued and the constant pain I endure daily affects me, as of course they cannot see it apart from my swollen fingers and me wincing in pain when I touch or carry items or even just knock by things the constant pain gets me down.
I'm not really a negative person ,but a half full glass type of woman , just be nice to converse with people who understand what I'm going through.

Comments

  • moderator
    moderator Moderator Posts: 4,086
    edited 30. Nov -1, 00:00
    Hi Vegagirl63
    welcome to the forum it is lovely that you have found us. I am sorry to hear you have been having such a rough time and as you say because your condition is quite invisible it can be difficult for people to understand and empathise with you. This is not helped by feeling fatigued yourself. You might find our information on fatigue helpful, you can find it here https://www.arthritiscare.org.uk/living-with-arthritis/fatigue
    It might also be worth asking you rheumatologist why you do not qualify for biologics as if your pain and disease is not being controlled yet it would be worth finding out what his plan is for the next step in relation to your treatment. Sadly we do have to be persistent in these things as most of us have a tendency not to stand up for what we really need. Maybe contact your rheumatologist and explain that you are still experiencing a lot of pain.
    We also have a booklet about managing pain that you might find useful, you can find it here https://www.arthritiscare.org.uk/do-i-have-arthritis/publications/217-managing-pain
    I an sure other forum member will be along to chat to you shortly, meanwhile feel free to ask as many questions as you like, most people post in the living with arthritis forum here https://arthritiscareforum.org.uk/viewforum.php?f=8
    Best Wishes
    Sharon
  • stickywicket
    stickywicket Member Posts: 26,271
    edited 30. Nov -1, 00:00
    Hello vegagirl63 and welcome from me too.

    As usual, our excellent webmanager Sharon seems to have covered most bases. The only thing I'd want to add is that pain and disease activity can be quite separate things so it doesn't necessarily follow that, because you are in a lot of pain, you're disease is very active. The rheumatologist prescribes the DMARDS and, if your blood results are good, will be happy with the disease-control aspect which is his / her part of the job. Pain relief is up to your GP.

    I can understand that, if he / she is happy about disease-control they won't refer you for biologics. If not (and, to my uneducated eyes, the constant swelling would indicate the disease isn't well-controlled) they might at least add another med (sulphasalazine? leflunomide?) to your meth and hydroxy. Another option might be to make the meth by injection rather than oral because the same dose seems to give better results when injected.

    As for people not getting it - you're so right. It's another, less obvious, side of the disease which we have to acclimatise to. And another reason why it's good to chat to people on here who all do get it because we've got it :wink:

    Please join in anywhere on any thread or, if you have any questions, just fire away, preferably on the Living With Arthritis forum where more people look in.
    "The deeper sorrow carves into your being the more joy you can contain." Kahlil Gibran