‘Mild’PsA - new diagnosis?

Hello everyone! 35 years after suddenly finding myself in intense pain and unable to walk unaided I might have a diagnosis!

I was told all those years ago I had slipped a disc- nothing of note on X-ray and of course I did not question this.

over the years I have had periods where I need a stick to walk, but I learned to manage with very little in the way of pain meds and when I was quite poorly a few years ago I was given a facet joint injection that worked like a miracle. I was told I had inflammation in my SI joints. I was also diagnosed with Hashimoto’s and a B12 deficiency.

i never made a fuss about my skin - I was told it was eczema and having come from a family where I had relatives literally covered in eczema or psoriasis I just couldn’t see the point in moaning.

which brings us the present day - I have aches and pains. I Got scared because I lost Function in my fingers and was referred to a rheumatologist who looked at my skin and said - that’s psoriasis and you have obvs had psoriatic arthritis since you were 19.

Now -obvs I must have a mild case and now I am worried that a) I will either get meds ( with side effects) or b) I won’t get meds and will just be left to go my merry way again.

I’m quite upset thinking of all the pain I’ve had over the years and bizarrely VERY upset that no-one ever did anything about my scalp psoriasis! I don’t know whether to fuss and point out every damn symptom ( plantar fasciitis, tendinitis in wrist, tennis elbow, pitted nails) that I have had or whether to keep quiet and be thankful I am not badly affected.

is this a normal reaction? I feel like I am grieving for the years without diagnosis!!

Comments

  • jamieA
    jamieA Member Posts: 659

    Hi @leptingirl

    I was diagnosed with PsA 3 years ago at the age of 65 having had psoriasis since the age of 15 and coming from a large family of psoriasis sufferers - none of whom has/had a PsA diagnosis or even heard of it. My PsA diagnosis came about while I was suffering recurring chest infections 6 months after a probable covid infection. When it struck my left knee swelled significantly, I couldn't close my hands or move my shoulders much and my right hip and SI joint were extremely painful. I ended up walking with elbow crutches. A few of the medics I've seen have said that covid was probably the trigger - though it could also have been triggered by the multiple antibiotics I'd been given over a short period of time afterwards. However looking back at my medical history over the last 30 years I'd been treated for back pain, a dislocated SI joint, tendonitis/carpal tunnel wrist, trigger finger, tennis elbow and plantar fasciitis. I've also had ridged fingernails for as long as I can remember. So I do sometimes wonder if it's been lurking in the background over the years and maybe covid triggered it to get worse.

    I'm now on sulfasalazine, methotrexate, folic acid and the adalimumab biosimilar Amgevita and that combination has certainly worked. I'm back to walking my dog 50-60kms a week. I did have a heart issue - atrial fibrillation and tachycardia 3 months after starting MTX and a recurrence of tachycardia 4 months later. On the 2nd occasion I was seen by a rheumatologist - not a cardiologist - and my MTX dosage was halved which seemed to sort the issue. I know we are all different and I don't like taking all these drugs but the alternative is much worse in my view.

    I hope you get some treatment that works for you soon.

  • Poppyjane
    Poppyjane Moderator Posts: 721

    Hallo @leptingirl and welcome to the online community,

    As @jamieA has proved we are all here to help each other with friendship, tips and advice as we live with the daily ups and downs of arthritis. Anger and upset are all normal reactions to a diagnosis however belated yours is. We all have to readjust to coping with the new reality of living with the condition.

    It can be helpful keeping a note of all your symptoms and the fatigue and emotional turmoil that accompanies your daily life because it might help your medical team decide what treatment might suit you . I attach some links which I hope will be helpful

    https://www.versusarthritis.org/news/2020/june/how-to-stay-active-when-you-have-arthritis/

    There are various products available for scalp psoriasis some prescribed and some over the counter. You could ask your local pharmacist.

    Grieving is a natural reaction to your late diagnosis and as you cope with coming to terms with all that has passed without recognition, the community is here to help you move to the next stage of your journey. So do browse round and join in, we look forward to hearing from you again soon.

    Best wishes

    Poppyjane

    If it would be helpful to talk to someone ring the Helpline 0800 5200 520

    Monday - Friday 9.00a.m. - 6.00p.m.

  • JamesWH
    JamesWH Member Posts: 1

    Hello @leptingirl,

    Thank you for sharing your story, I'm new to this forum and this is my first comment. I've been on a similar path with suffering from psoriasis (mainly scalp) followed by PsA (hands, feet, elbows, chest), although I haven't been through the pain and frustration you must have gone through with a late diagnosis. I'm currently 38 years old, my psoriasis symptoms started when I was about 30 and PsA symptoms started a few years later.

    I understand how you can be very upset by getting little help with your scalp psoriasis. Although I didn't find my scalp psoriasis physically painful, I found it hard to live with as it wasn't something I could cover up so it was very noticeable when meeting people, which had a big impact on my confidence etc.

    I've now been on medication for a few years - methotrexate, folic acid and adalimumab. When I was prescribed methotrexate I was initially quite apprehensive after reading online some of the struggles people had with side effects. I started with just methotrexate and folic acid tablets which helped my Ps and PsA symptoms to some extent, and then later down the line, I was also prescribed adalimumab. I now have no scalp Ps and no joint pain allowing me to live a completely normal life, which I'm incredibly grateful for. I occasionally get some minor pitting in my fingernails but it's hardly noticeable compared to what it used to be. I still experience some side effects from the methotrexate - sometimes the day after my weekly dose I'll have a metallic taste in my mouth, feel a bit sick and have periods of fatigue but this only lasts a day or so and not every week. I'm also finding that after making some healthier lifestyle changes these side effects seemed to be reduced. For me personally, the benefits of the medication massively outweigh the side effects I have experienced.

    If you do start with medication I would suggest going in with an open mind and trying to stay positive.

    All the best

    James

  • Poppyjane
    Poppyjane Moderator Posts: 721

    Hello @JamesWH welcome to the online community

    It is great to meet you and I thank you for sharing your own experience so well in order to support @leptingirl .

    Living with any arthritic condition can cause you to loose confidence , it is a bit like experiencing part of a grieving process. It sounds as though the medication you have been prescribed has helped a lot .The side effects you are experiencing occasionally are symptoms you can cope with. So you kindly would recommend this route to others who are trying to make the decision.

    We hope you will browse round the community and join in with other discussions , we look forward to hearing from you again soon.

    Best wishes

    Poppyjane

    If it would be helpful to talk to someone ring the Helpline 0800 5200 520

    Monday - Friday 9.00a.m. - 6.00p.m.

  • Lindaa
    Lindaa Member Posts: 24

    I was ages before I had a proper diagnosis. Was prescribed creams and various potions for skin and scalp supposed ecxema and wasted a lot of money on buying recommended stuff. Swollen toes were shrugged off by one gp as'a touch of gout'. Plantar fascitis was blamed on being on my feet too much and a lot of walking. Eventually a different gp sent me to rheumatology where the consultant took one look at my feet and said 'psoriatic arthritis' and prescribed mtx. Also have osteoarthritis so 2 hip and one knee replacement done.

    I wish I had had an earlier diagnosis but cant do anything about that now.