Advice please

maud48
maud48 Member Posts: 170
I would really like some advice as I am quite confused and not sure if everything that can be done for me is being done.
I was initially diagnosed with PA by my GP several years ago. I am 61 and have had psoriasis since the age of 4 and have pitted nails which are also coming away from the nailbed. The arthur became more troublesome around 2 years ago and I was prescribed anti inflammatories by my GP and had some X rays done on my neck which showed arthritis. I didn’t have, and have never had any blood tests.
I saw a rheumatologist early this year, because I live in a small town in Wales waiting times are very long as consultants only visit the hospital here once a week. I did ask if I could see him earlier by going to the hospital where he works the rest of the time but apparently that isn’t allowed.
I saw the rheumy for around 15 minutes. He told me I have OA not PA and that I have it in my hands, spine, neck, knees and feet and that there was nothing to be done. Also said I didn’t need to see him again.
At present I am in constant pain. I can walk, slowly, for around 30 minutes until the pain in my back and feet gets too bad. Sitting is painful for my back and knees and lying down painful for my neck. I try to keep going as best I can but by the end of the day can just about drag myself up the stairs (those knees!) to spend the night awake every hour with neck pain.
I have been prescribed dicolfenac sodium 50mg tablets 3 per day and cocodamol 30mg 4 per night (with 4 hours in between) by my GP.
I asked my GP if I needed a blood test to check for PA and she told me there was no point as I wouldn’t want to take steroids anyway.
I also have ringing in my ears, dizziness and nausea which I eventually saw a consultant at the local hospital about and have been referred to a bigger hospital for more tests. He thought it was either a trapped blood vessel in my neck due to the arthur or Menieres disease. While waiting for that appointment I am not allowed to drive.
Sorry this is so long. I’d really like some advice as I would like to feel I have more control over my treatment but am not sure what questions to ask or what else can be done. I know arthur can’t be cured but would like to feel that I have done everything I can before I accept the fact that I have to live in constant pain and being tired all the time,
Thank you,
Maud

Comments

  • helpline_team
    helpline_team Posts: 2,248
    edited 30. Nov -1, 00:00
    Dear Maud,

    Thank you for your enquiry to us here at Helplines. I can well imagine that this situation is causing you great concern.

    You can request that a set of blood tests be done to check for inflammatory arthritis in your blood.
    ESR, CRP, RF, full blood count would be normal. GPs do these.
    If by any chance you did show an inflammatory process (such as psoriatic arthritis) then the rheumatology drugs which are prescribed would be disease modifying drugs (anti malerials or/ methotrexate/ or sulpahzelazine rather than steroid tablets).

    If you are experiencing difficulties getting to rheumatology then you'd be welcome to ring us at Helplines. The NHS does have to meet referral target times these days so you can bring in help to speed things up if need be - local MPs can help for example.

    But do give us a ring if you'd like a talk about things.

    I hope we can help further

    Guy
  • maud48
    maud48 Member Posts: 170
    edited 30. Nov -1, 00:00
    Thank you Guy for your quick reply.
    I haven't got any more appointments to see the rheumatologist; the constultant I am waiting to see is ENT.
    I could ask to see the rheumy again but not sure if anything would be achieved by it at present.
    I also assumed that he would know just by looking if I had OA or PA but others on this forum have said I should have blood tests so not sure now.
    It's difficult as I'm still coming to terms with all this an pain is such a subjective thing and there's no 'acceptable' level of it or way of measuring it,
    maud
  • helpline_team
    helpline_team Posts: 2,248
    edited 30. Nov -1, 00:00
    maud48 wrote:
    Thank you Guy for your quick reply.
    I haven't got any more appointments to see the rheumatologist; the constultant I am waiting to see is ENT.
    I could ask to see the rheumy again but not sure if anything would be achieved by it at present.
    I also assumed that he would know just by looking if I had OA or PA but others on this forum have said I should have blood tests so not sure now.
    It's difficult as I'm still coming to terms with all this an pain is such a subjective thing and there's no 'acceptable' level of it or way of measuring it,
    maud

    Dear Maud

    It sounds as if you are having a difficult time at the moment. As has been suggested it may help to contact our helpline where you can talk over your concerns. The freephone telephone is 0808 800 4050 and we are open Monday to Friday, 10am – 4pm.

    Best Wishes
    Dawn