Wish me luck!!!

SandiB
SandiB Member Posts: 26
edited 3. Oct 2017, 13:57 in Living with Arthritis archive
After being diagnosed with PsA in July and not able to take painkillers due to anaphylaxis I was put on very low dose methotrexate. 3 weeks in and feeling absolutely rubbish my nurse told me to stop. Since then been waiting for a rheumatologist appointment. Today they rang and gave me an appointment for Monday!! So excited but also nervous about what they'll try next. Any advice gratefully received about what I need to tell them. Am so tearful at the moment as pain in my hand and now feet is increasing. Have had all sorts of painful joints in the past 3 years and now wondering if it was the PsA or if the docs will think I'm nuts if I start talking about all my aches and pains!!!
Any ideas for pain relief that works that's not NSAIDS???
Thanks all xx

Comments

  • Hobble
    Hobble Member Posts: 80
    edited 30. Nov -1, 00:00
    Hi SandiB

    Just been recently diagnosed with PsA myself. Apart from a steroid injection given on the day of the diagnosis, Ive not been prescribed anything yet. Sorry I can't help with any pain relief suggestions but just wanted to wish you luck and hope you find some relief soon.


    Hobble
  • stickywicket
    stickywicket Member Posts: 26,333
    edited 30. Nov -1, 00:00
    Why, on earth, would they 'think I'm nuts' just because more joints have joined in? Unfortunately that's exactly what happens with an autoimmune form of arthritis, especially if it's not being treated with proper disease modifying meds.

    I'm sorry the meth (one of the latter) didn't work out for you. They'll probably try you on another. Sulphasalazine and leflunomide tend to be fairly usual started DMARDS.

    Just tell them whatever is relevant - how the meth didn't work out, where the pain is, photos of any swellings, how long morning stiffness lasts etc. Basically, don't get so anxious about the questions that you fail to properly take in the answers :wink: Take someone with you as a second pair of ears.

    Anti-inflammatories (NSAIDS) do help with pain but there are lots of pain-relieving meds that are not anti-inflamms. Are you allergic to normal pain relief eg paracetamol, codeine etc? It must be scary trying new meds if you're not sure. However, with PsA, it's not just about relieving the pain. The disease also need to be held back hence the DMARDS (Disease Modifying Anti-Rheumatic Drugs).

    Best of luck for Monday.
    If at first you don't succeed, then skydiving definitely isn't for you.
    Steven Wright
  • barbara12
    barbara12 Member Posts: 21,133
    edited 30. Nov -1, 00:00
    Hello SandiB
    I dont think we have met so welcome from me I would make a list of things you need to say, I always do and some are pleased its easier to read through than keep asking questions..I hope all goes well for you..
    Love
    Barbara
  • dreamdaisy
    dreamdaisy Member Posts: 31,557
    edited 30. Nov -1, 00:00
    Tell them everything, give as full a picture as you can of how you are being affected. Any form of arthritis is degenerative and progressive, meds-wise perhaps I've been fortunate regarding side-effects with only one causing me severe trouble: leflunomide gave me crippling headaches whereas cyclosporine made me hairy (which didn't bother me as it wasn't painful). I keep my pain relief to the minimum so I always have an escape route when required: whatever I take merely dulls the sharper edges, the stronger the relief the more I am removed from the pain rather than vice versa. Please let us know how you get on. DD
    Have you got the despatches? No, I always walk like this. Eddie Braben
  • mig
    mig Member Posts: 7,150
    edited 30. Nov -1, 00:00
    Writing everything down no matter how trivial it seems,it all helps.
  • SandiB
    SandiB Member Posts: 26
    edited 30. Nov -1, 00:00
    Thanks all. I am writing a list of questions to ask and symptoms I've been having.
    I'm sure it'll be fine. Just need to find the right meds for pain etc.
    Will let you know how I get on.
  • SandiB
    SandiB Member Posts: 26
    edited 30. Nov -1, 00:00
    Had my appointment today. Due to my difficulties with medication in general it seems all the DMARDS are probably not suitable. However, before I can have biological I need to meet the criteria which involves an MRI of my hip to determine if I have Sacroillitis.if I do I can start bio therapies, if not I have to try Leflunomide and hope I don't react. If I do react it's a charcoal wash out!! Apparently not nice!!
    So I have to wait for MRI and in the meantime can't even have a depo steroid injection so the pain continues!!!
    Happy at least something is happening but fed up as it could be months before I get started on meds!
  • dreamdaisy
    dreamdaisy Member Posts: 31,557
    edited 30. Nov -1, 00:00
    Qualifying for biologics is a hurdle that we have to leap as the cost to the NHS is substantial: I had to fail three DMARDs before they gave me the option (which wasted years) but now patients have to fail only one. They are more powerful drugs than the DMARDs and, if given early enough, can yield good results. I hope the MRI appointment comes through soon - I used to let the department know that I could take an on-the-spot cancellation as I live less than a ten minute drive from the hospital which was handy; I never had to wait more than three days. Please let us know how you get on. DD
    Have you got the despatches? No, I always walk like this. Eddie Braben
  • SandiB
    SandiB Member Posts: 26
    edited 30. Nov -1, 00:00
    Thanks DD. I have said I'll take any appointment but am also going to ring the department to make sure the message gets through!
    Will let you know how it all goes xx