Psoriatic Arthritis

Davie1984

Hi everyone, I’m Dave, 38 from Glasgow. I was diagnosed with sero-negative arthritis 10 years ago, it started in my knees and flare ups were maybe only every 6 months or so. I would get the knees drained and a steroid injected which seemed to help greatly. Over the years it became worse and last June I was diagnosed with psoriatic arthritis, I’ve always had a little psoriasis on my scalp but was never mentioned , that’ll be why it wasn’t diagnosed till I was asked if I had psoriasis. The condition is now in my pelvis and whole spine. I’ve been in methotrexate injections , started last June, which didn’t agree with me , then sulfasalazine. I was hospitalised in January with a whole body flare and kept in for 8 days for pain relief and to let it settle. I got an MRI on my spine and they said it is axial spondyloarthropathy. They are now starting me on adalimumab next week , which I cannot wait to try. Since last summer I have been I much pain, after each flare it never settles to pre-flare levels. Over the past week the fatigue has been the worst ever , I actually feel faint sometimes with it. I’m starting to have another flare , hips , back , knees and shoulders are becoming increasingly painful and I’m dreading ending up in hospital if it is severe again. The disease has really got a grip on me now , probably because it was untreated for a decade , is there anyone who can give me some advice , about managing pains, dos and donts , how to stay positive and how bad it could become. I already have crutches for morning s and during flares, which has made me somewhat depressed.I have a 4 year old son who is very active and wants constant attention , and I also work full time, although I’m off for 2 weeks just now, thankfully. Thank you for hearing my story and I appreciate any advice .

CarylW

Hello@Davie1984

You have been on quite a journey with your diagnosis and flare ups and I am very glad you have found this online community where you will hopefully find some shared experiences from our members.

I am posting some links to information from our website below, but you may well have found this out for yourself already.

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

https://www.versusarthritis.org/about-arthritis/treatments/drugs/adalimumab/

Do keep in touch and ask questions. We look forward to hearing how you get on.

Best wishes

Caryl

Nfk_gal0617

Hello Dave1984, So sorry to hear it has taken so long to get correctly diagnosed.

It must be very hard with an active 4 years old. My grandaughter finds it hard to understand why I am unable to grip and help with the Duplo (other makes are available) or whatever the play may be. We still enjoy stories and she likes to play at helping me. Which sometimes is a big help!

I hope the new drug you start next week gives you some relief and stops the progresson.

Take care, Nfk gal

Davie1984

Thank you for the amazing responses. It was such a relief coming across this community as one definitely feels like your in it alone. Oh my son doesn’t stop , he is glued to me all day, wanting to play with some toy or game, unfortunately I can’t participate every time which I do feel terrible for. I will be sure to check out the help guides and information. many thanks .

jamieA

Hi @Davie1984

I'm Jamie also from Glasgow and also with PsA. Like you I had an off the cuff question as to if I had psoriasis whilst I was having my knee drained by a medic in October 2020 and then I was diagnosed with PsA. I'm on sulfasalazine, methotrexate and then the adalimumab biosimilar Amgevita was added July 2021. Amgevita has helped me significantly. Like you I had been hospitalised a number of times with pain until I was put on Amgevita - I haven't been hospitalised with pain since. Three weeks after my first Amgevita injection I could feel an improvement and by 2 months in I was able to hand back my crutches. I'm not by any means cured - I'm having a flare at present - but it is nothing like as bad as it was at it's worst. I was on morphine during the worst of times. I can now walk my dog 50-60kms a week.

I'd suggest you ask for a referral to a pain management clinic. I was seen by a pain consultant in 2021 - online due to covid - and she prescribed capsaicin cream and lidocaine patches. The lidocaine patches help with the pain in my sacroiliac joints at the base of my spine and pelvis and the cream for my other joints. Also ask for rheumatology physio - virtually the first thing they tell you is you need keep moving. I've had two 12 week sessions online one-to-one with a rheumatology physio on the nhsanywhere system. They helped greatly and I would recommend them to anyone. Ask for an occupational therapist referral to help with tools you might need.

Lastly I'd say that you need to be quite vocal and direct with the medics regarding your condition and your need for a treatment that works for you as quickly as possible.

I hope you get stabilised soon.

Davie1984

Thanks @jamieA , seems like you’ve been on quite the journey, I’m so grateful for the reply. Your circumstances have been quite similar so it’s really good to hear your story and advice, you’ve been through the gauntlet of meds and endless hospital. I shall be calling my gp tomorrow to enquire about the pain clinic and also query a couple of other symptoms . The Amgevita will be delivered on Thursday and I must admit I have high hopes for it. Can I ask , have you ever experienced a weird feeling, like the nerve’s in your head and parts of your body jolt and almost feel tingly, along with a constant headache, sometimes with twitching eye lids ? I sometimes get it with flares but it is particularly bad with this flare. I have inflammation at the bottom of the spine and also further up , so I’m assuming it is something to do with that . Also vertigo feeling sometimes as well?

Thanks again for sharing your story and really good advice. It’s very much appreciated and somewhat uplifting .

jamieA

Hi @Davie1984

I've experienced bouts of what I can only describe as like the after effects of an electric shock - I'm originally an electrical engineer so know what the real thing feels like. I've had issues with my balance intermittedly. I also get significant headaches, tinnitus, cold hands and feet. I've put that down to the fact I'm taking so many drugs - particularly the heart drugs I now take including blood thinners. I think also the amount of interrupted sleep adds to all of this. I've had a number of what I now realise as flares since I stabilised in September 2021 but the latest one I'm still suffering is the worst I've had. It's like hands, shoulders, knees and toes at present.

I had an MRI scan in 2021 of my lower back and when I asked why I was told that PsA can cause deterioration in the sacroiliac joints. I regularly get pain in the lower right of my back just below the belt line. The rheumatology consultant I saw in February confirmed this was due to my sacroiliac joint. I use lidocaine patches when this happens and they really help.

When I was prescribed Amgevita I had to have training on performing the injection. As it was during covid it was done over the telephone but they asked if someone else was in the house in case I had a reaction to it. I bought a small fridge just for the Amgevita - it's delivered every two months, so 4 pens and I have 2 spares normally so on delivery day I have 6 pens normally. I also have a fridge thermometer as it needs be kept at 2-8C.

I hope things settle for you soon.

Jamie

Davie1984

Hi @jamieA your invaluable advice is greatly appreciated. I saw a gp yesterday, I was offered stronger pain killers (tramadol) but I’m not keen on taking something so strong , especially with a 4 year old at home . He gave me something to help me sleep and an anti viral as a precaution because he said I have a fever. Unfortunately I didn’t get to say exactly what is going on , he kept cutting me off and talking over me so I left feeling a little disheartened. The nerve jolts have eased a bit today and the back pain has lifted somewhat this morning. My knee and pelvis are worse , the fluid feels quite dense so it’s impossible to bend . I really need to call the rheumatology nurse to arrange a quick meeting so she can show me how to do the injection. I’m expecting the delivery of Amgevita on Thursday along with the other necessities. Good idea using a separate fridge, I shall be checking Amazon for one later in , my son is never out the fridge and I can’t risk him going near the meds, we’ve tried child locks etc for the fridge door but he always figures it out.

Again thank you Jaime. I hope your flare settles down and you are flare free to enjoy the summer walks with your dog. Cheers

jamieA

Hi @Davie1984

I know what you mean about medics. One thing I've learned over the last two and a half years is not to be a passenger in all of this and to be forthright with the medics regarding my state of health and what I need. I remember meeting another dog walker and as we were chatting she noticed my compression gloves and we had a conversation about inflammatory arthritis - she had RA and attended the same hospital I do. She said something that I've not forgotten - that she wished there was a drug that could be administered to some medics she dealt with which would give them the symptoms of RA for a month so they could feel what it was like. Thankfully the rheumatology team I'm under now seem to be far more tuned into the patient.

I hope that Amgevita has the same effect for you it has had for me. I was asked last year to estimate the improvement I'd had from worst to best times and I said I'd guess 80-90% better. It's almost 2 years since I was last admitted for PsA pain issues. At that time I'd describe the pain in my joints as if someone had hammered metal wedges into my joint spaces. This current flare isn't in the same league of pain.

I'd also suggest you push for the nhsanywhere rheumatology physio - the 12 week course was extremely helpful in getting me and keeping me moving. I've now just completed the free Nuffield Health Joint Pain programme held at their gym in Minerva Way, Glasgow which I'd also recommend.

I bought a standard table top fridge and that also allows me to keep a couple of cool pads constantly in the ice box. I also registered with Scottish Power that I need a constant electrical supply for stored refridgerated medication. I'm assuming you'll be getting deliveries from Lloyds Pharmacies and they usually deliver every two months - so 4 pens. Since you'll always have the deliveries before you run out and you need a backup then at the point of delivery I end up having 6 pens in the fridge for a time. That about £1000 of medication so it's a good idea to register with SP.

Best of luck.