Psoriatic arthritis not coping well

Hi

Im new here, Im 32 and was diagnosed at 23 after having psoriasis since i was 15. I have 2 little boys, the arthritis after my first son was very bad but went into remission on sulfasalazine until after my second son was born.

This is where my arthritis has got worse, two years on im still in agony, my medication was changed to methetrexate which didnt help.

I am now 8 weeks into taking leuflomide and im flaring every week in my knees, i get a fever, shivers and then a knee swells up and i cant walk for days.

Im taking the maximum dose of ibruprofen.

Im feeling very sorry for myself at the moment, im even considering trying to be signed off work as the flares are really affecting my life.

Im just praying the new meds will start to work soon, due to see the rhumy in a months time.

Has anybody else had a period of constant flares that has improved with time?

Thankyou for reading... Lou

7 Replies

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  • Hiya Lou,

    Sounds like your having a tough time. Does your Rheumtology Dept. have a nurses helpline they be able to offer you help while your waiting to see if these meds are going to be the right ones for you. I have been in a similar situation to you quite a few times and I've been offered systematic steroid injections or localised injections. Could you ask for stronger pain relief and anti inflammatory tablets, please make sure they give you a stomach protector along with the anti inflammatory tablets as they can damage your stomach with long term use. Make sure you let the GP and hospital know how difficult it for you especially with two young boys.

    It's hard to find the time that you need to rest and normal household tasks can feel like a mountain, be sure to ask friends and for help when you need it.

    I was diagnosed after my third daughter was born, my husband worked away from home and I lived on the other side of the country to my family. There's been times when I've had to use crutches to help me walk, when I was in so much pain, I wanted an ankle fusion, but with the help of a brilliant physio, I no longer use any walking aids, I can walk much greater distances and hoovering the house is a quick 10 mins rather than spilt up over 2 days. It does get better, it's just the waiting out while you find the right treatment that is the worst part. But when you do it can change everything. Hang in there, I'm sure you doing the best you can for everybody, but try to save some time in the day for you.

    G x

  • Thankyou for your reply.

    My nurse is really helpful, having to wait for the rhumatologist incase I need fluid taking off my knees and injections.

    Flare ups are the worst! People find my condition confusing when one day I'm ok and the next I'm in bed with swollen joints.

    Thankyou so much for your kind words, hope you are well x

  • Hi I'm New on here but I have psoriatic arthritis. Like you I was diagnosed in my 20,s. I am now 54 have damaged joints in my hands and feet with chronic fatigue and pain. I medically retired from work 3 years ago. I inject methotrexate once a week and go into hospital every 8 weeks for an infusion of afliximab for the day. Up to now the treatment seems to be controlling the disease. Keep positive and strong. Susan x

  • Hello . I new to this . I going for test to see if I have psoriatic arthritis. My both wrists are swollen and very painful on flare ups . Plus I have diabetic neropothy in both feet .so you can imagine the pain I'm in 24/7 . Is there any advice plz .

  • Hello, I understand how hard it can be when having a flare up, it really effects everything you do. Hopefully it's just about finding the right treatment for you.

    And in the mean time taking maximum nsaids to help calm the flares and inflammation.

    Also I alternate between ice packs and heat packs when flaring and try to get as much sleep as possible.

  • Yes I have had a long period of flaring. I guess we're talking well over a year of severe symptoms including crushing fatigue, very swollen knees and shivering / low grade fevers. For much of that time anything like normal life was impossible.

    The traditional DMARDs, Mtx mainly, got me out of the worst of the flare but really it was only when I started on Humira that my health really improved. NICE guidelines allow for biologic therapy if you have 2 or more persistently swollen / tender joints and have not responded sufficiently to 2 or more DMARDs.

    In your shoes I would play the 'busy young working mum' card to the max. It may well be that you qualify for biologics but there does seem to be some unofficial rationing going on. That's why we have to be assertive in our quest for the best possible treatment.

  • Thankyou for your reply.

    Flare ups are really awful and really effect your life, I'm glad your health has improved on humira.

    This condition can be confusing, my nurse didn't have any idea as to why I'm flaring weekly.

    My nurse says if leauflomide doesn't work I may be able to go onto a biologic as I've tried both sulfasalazine and methotrexate.

    Thankyou again

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