How do I manage my life with Psoriatic Arthritis?

DandyLion

I have been suffering from severe pain in my body for over 10 years. I have had two carpal tunnel operations and been diagnosed with Fibromyalgia. My hands constantly shake and the pain in my body has become unbearable. I have pain in my neck, spine, both shoulders, my left elbow, both wrists, hands and fingers, both knees and both feet. I thought that I had become unhealthy from making poor lifestyle choices and eating badly. When I tried to exercise I became ill and I would start to gag and nearly be sick. I went to my doctor numerous times and they said it was due to stress. I asked to see a dermatologist as I thought I had fatigue because of my diet. I was diagnosed with a milk intolerance. I have IBS and dry eyes. I went to an IBS clinic and was told that they could do nothing for me. I have brain fog. I asked to see a physiotherapist as my shoulders hurt so much and she was the one ray of sunshine in my life. She said that my pain was widespread and thought that I might have Rheumatoid Arthrtis. She referred me and I became lost in the system I visited the doctor and told them I hadn’t heard from Rheumatology. Still nothing. I visited the doctors again and asked again. A week later I had an appointment with Rheumatology. I saw the consultant for 15 minutes and she diagnosed entrusts and psoriatic arthritis. I’ve had a steroid injection which took some but not all of the pain away. I have now to visit the doctor to get oral steroids. If they work I’ve been told not to go back to the hospital. If they do t I’ve been told to go back. They took blood tests and they are waiting for the results. I dont know what to do now. The medical profession have left me in limbo. I can’t take steroids long term as they are bad for your kidneys and liver. I feel lost, upset and overwhelmed and do not know where to turn. I feel like people in the medical profession treat me as if I am a hindrance and difficult. I have found that unless I push for help I get ignored and even forgotten. Can anyone offer advice please on what I should do to get the hospital to take me seriously? Is it usual for a patient to be told to take steroids and if they work to not go back to the hospital? Any advice would be greatly appreciated, thanks you.

Baloo

@DandyLion I think you are describing the NHS at its absolute best. The steroid thing seems correct, if they are not working the doctor would refer you back to hospital for testing to pieces and diagnosis of the gospel truth. It's what they do. Relax.

Mine was like a short course of steroids from the doctor, which did actually work wonders, and see what happens afterwards. The condition came back with a vengeance, and I had to be referred to hospital. The hospital wanted to see my condition at its worst without steriods, and test it to bits, so they could diagnose it properly and sent me back home armed with the truth.

Listen carefully to what the hospital and doctors say is going on.

Ellen

Good morning @DandyLion

A nice reply from @Baloo there, but If I may I'd like to just pop this link in about Psoriatic Arthritis (PsA) as the rheumatologist diagnosed you with that:

https://www.versusarthritis.org/about-arthritis/conditions/psoriatic-arthritis/

Rheumatology tends to be very busy and appointments are often very short unfortunately. I hope you will get a further appointment there even if it means being re-referred by your GP.

Many of our members advocate taking someone with you to appointments to support you when faced with a consultant or GP. If you have someone who you are happy to take with you?

My best wishes

Ellen.

jamieA

Hi @DandyLion

I was diagnosed with psoriatic arthritis in 2020 and enthesitis in 2022. For the first year after diagnosis of PsA I was on oral steroids for about 4 months and had numerous steroid injections initially into the affected joints but laterly into my rump as a general treatment. About a year after my first diagnosis the cocktail of DMARDs I'm on worked and I'm a lot more functional - though definitely not fixed. I rarely require steroids now.

I only have my own experience to draw on but I cannot imagine that someone diagnosed with PsA and enthesitis could be left with no urgent and ongoing treatment for the diseases. This quote is from the VA website -

Psoriatic arthritis can cause long-term damage to joints, bones and other tissue in the body, especially if it isn’t treated.

Starting the right treatment as soon as possible will give you the best chance of keeping your arthritis under control and minimise damage to your body allowing you to lead a full and active life with psoriatic arthritis.

From my own experience if I were to offer you any advice it would be that you need be assertive in your dealings with the NHS. Don't assume that your best interests are being considered or are front and centre. Write down the questions you want to ask at appointments, write down the answers if you can. I think @Ellen suggestion of taking someone with you is a good idea so that you can confirm later exactly what was said.

I hope you get treatment that works for you soon.

DandyLion

Thank you for your comment. This has been very helpful. The consultant diagnosed me with enthisitis and asked me if there was psoriasis in my family. I then got an injection in my posterior. I was in such shock at my appointment that I didn’t ask the consultant many questions but the nurse was very helpful. I will take the oral steroids and then get in touch with them afterwards. That you for sharing your journey with me.

jamieA

https://community.versusarthritis.org/discussion/comment/717847#Comment_717847

Hi @DandyLion

That's very similar to what happened to me. Initially I was being treated for a swollen left knee which the 2nd line A&E consultant drained and put a steroid shot into. By the 2nd occasion it needed drained a month later I couldn't close my hands - the A&E consultant suddenly asked me if I had psoriasis or if anyone in my family had it and diagnosed me with PsA. He'd previously been a rheumatologist. I come from a large family of psoriasis sufferers and none had ever heard of PsA. I'd had psoriasis for 50 years before the PsA appeared. The A&E consultant immediately put me on sulfasalazine and naproxen and arranged a rheumatology consultation. I'm very grateful for that consultant's intervention however the first rheumatology consultant I had was really unhelpful. That coupled with my GP being just as unhelpful meant I had to become more assertive to get the condition managed. I actually ended up changing both my rheumatology consultant and my GP. I know that's not an option for many people but for me it has worked. My new GP and rheumatologist listen.

DandyLion

Thank you for sharing your journey x

whatsthepoint

I’ve had similar from hospital. Diagnosed with PsA 3 years ago and chronic pain. Methotrexate did not agree with me, sulfasalazine and leflunomide also! My rheumatologist said I needed referred to pain clinic as could not help me and would not let me try biologics as my fingers did not show any inflammation!! Yet in terrible pain with all my bones and joints. Been waiting a year for a pain clinic appt, have tried chasing up to no avail. I never ever had any X-rays or scans when I was diagnosed either which I find odd. Only relief is a 6 week reducing steroid course but can’t have them often. My pain and lack of range of movement is severely affecting my life now and am struggling.

keep on at drs etc, hope you get sorted and pain free soon.