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help/advice on pain management

Posted , 10 users are following.

sheila65847
sheila65847

Hi guys and gals,

despite using strong painkillers, oxycodone-both long lasting plus short acting plus amitryptiline for ssleep plus topical ointment, I cannot get on top of the pain or swelling. I started Stelara in December after DMARDs, Enbrel & Humira failing. I'm also on 7.5mg Prednisone daily. I can't cope much longer, this flare started in November. I suppose I should be grateful that my skin is clear but the pain in my joints is horrendous. My knees, hands and wrists are so swollen. Mobility is crap, I'm virtually crawling to get upstairs, getting dressed is so difficult and painful. I'm seeing OT in 2 weeks plus my rheumatologist on 8th March, also I'm seeing another rheumatologist in may for 2nd opinion because I'm not convinced my current one is expert in PsA. I've been going to hydrotherapy for a few weeks and am going to continue as a paying client because it's been good for me mentally and I don't want to sit around waiting to become completely immobilised. My knees are like melons today, should I rest, elevate or what? Sorry for negativity but I've just about had enough

1 like, 40 replies

40 Replies

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  • frances66
    frances66 sheila65847

    Posted

    Hi sheila, it's Fran. I'm so sorry to hear about your pain. I feel like jumping off a cliff at the moment. Just started apremilast a week ago, had constant diarhea, I seem to spend all my time on the toilet!! I'm hoping they will kick in soon,as they don't seem to be doing much at the moment. I to am on amitryptiline, which doesn't make me sleep at all. I don't know what pain killer's to take,as my stomach is hyper sensitive. I had a mri scan yesterday to check my lower back, as the pain I'm in, I can't hardly move. If this is what it's like to get old, they can keep it. Try not to get to down hearted, I must admit I do a lot of the time, but it doesn't help in the long run.xx
    • sheila65847
      sheila65847 frances66

      Posted

      Thank you Fran. Wondered how you were getting on with it. I've just turned 52, not old surely? But today, that 100 year crone has invaded me again. I just feel it's a day wasted. I've been too unsteady to go outside for fresh air. Always tomorrow 👍

      Hope the upset tum is just temporary reaction to new drug. Let us know how MRI Goes. Thank you all for your support xxx

    • lucynewas
      lucynewas frances66

      Posted

      There is now god evidence that rosehip is at least as effective as anti inflammatories. And nine of the side effects. Worth a try.
    • paula75423
      paula75423 lucynewas

      Posted

      My husband has been taking rosehip for over a month now and it's not helping him at the minute
    • lucynewas
      lucynewas paula75423

      Posted

      We know that it can take several weeks for blood levels to stabilise. If there is no improvement at 8 weeks on the maximum recommended dose, then a review and further tests for inflammatory markers may be helpful. ,
  • KupKake
    KupKake sheila65847

    Posted

    I'm so sorry to hear about your pain, it's all consuming....  

    Biggest of hugs to you, I hope your flare up ends soon.

    xxx

    • sheila65847
      sheila65847 KupKake

      Posted

      Thank you KK. I do try my best to be upbeat. Chronic pain makes that so hard. I know Stelara has a longer lead time than other treatments. They assess in week 24 whether there is benefits or not. I'm on week 10 so there's time yet. I'm scared because currently in England it is the final one currently available on NHS. If you live in Scotland or Wales there is an oral drug called Apremilist, which my rheumatoid thinks is the one for me however it has not been licensed by NICE. Fustrating. Are we THE UK or not. Thank you x
  • Littlelorry
    Littlelorry sheila65847

    Posted

    Are you able to take magnesium with your other medications? I would check with your GP and if it is ok try this at night with piriton (the drowsy one) to see if this makes any difference to your sleep. In addition do you take any anti-inflammatory supplements such as Krill oil, astaxanthin and curcumin with turmeric to ease your pain which are often very helpful - again check with the GP. I hope that you are soon free from pain.

    • sheila65847
      sheila65847 Littlelorry

      Posted

      Hi Lorraine,

      thanks. I do take magnesium and cod liver oil supplements plus turmeric, fresh ginger and garlic so I'm really trying hard. My PsA was much better when I was on Humira and Leflunomide but I had severe pneumonia in April 15 so they were stopped. When I restarted them in July, my body developed antibodies so they were no longer effective. That's why I'm on Stelara now. Apparently it takes longer to work than Humira and Enbrel so there's time yet. I'm going for weekly hydrotherapy too and applying a topical ointment called Flexiseq. It's just very bad at present - pain and mobility. It takes a long time to get dressed! I had to be assisted off the bus last Thurs, my knees just wouldn't work. I'm just frightened of the disease progressing, I'm 52 and was very fit prior to 2010. It's so fustrating and painful. I'm pretty low at the moment but I know if I reach out for help on this forum, people like you get in touch and it helps a lot, thank you x

  • lucynewas
    lucynewas sheila65847

    Posted

    Rest is really important. But keeping comfortable enough to keep mobile is really important too. Speak to your specialist nurses to help get your symptoms under control.
    • sheila65847
      sheila65847 lucynewas

      Posted

      Hi Lucy

      thanksgiving, it's all about pacing. Usually I have an active day followed by a rest day. I didn't do an awful lot of Thursday, rested y day and expected to feel better today. This planning suggested by specialist nurse and OT usually works well and I have decent quality of life; I keep all appointments in the afternoons because of morning stiffness, difficulties dressing etc. I had dreadful night last night, awoken 4x with pain which does have a knock on effect, perhaps that's why I feel so low. Hopefully the swelling will reduce overnight, I hope so because I want some quality time with the grandchildren.

    • lucynewas
      lucynewas sheila65847

      Posted

      Are you prescribed amitryptiline or nortryptiline at night to improve your sleep quality? This can have a dramatic effect on pain.
    • sheila65847
      sheila65847 lucynewas

      Posted

      Hi Lucy

      Yes, ami, which usually helps. I guess that gives an indication of what a dreadful flare up this is. It's when I move during sleep the joints are immobile cos of the swelling. You see this time includes both elbows, right shoulder, top of

      spine/base of neck and ankles. Yes these guys have joined my pain orchestra, !!! Hopefully temporarily. It's so disheartening when you wake sobbing, tears down your face and it takes ages to move because your body has stiffened up. Not to mention how this affects your partner so it's separate rooms at the moment. Doesn't help. But.....tomorrow may bring respite. Thk you xx

    • steve43628
      steve43628 lucynewas

      Posted

      Yep.One of my odes to all of us in pain sad I've just taken an Oxynorm.

      Oh Guardian where are you? I emplore you!

      Guardian.Rest with me a while.

      Caress me with tears to not spill

      When you lie upon the pillow

      Guardian.Hug and,comfort me,for the pain I'm in.

      You can cry the tears of pain I'm in.

      Sweet dreams.Will you let me free?

      Sweet dreams.Will you envelop me?

      YOU'RE NOT ALONE.NEVER THINK YOU ARE!! 

    • sheila65847
      sheila65847 steve43628

      Posted

      Thank you, Steve. Well said😊

      that's one of the difficulties, I feel so isolated sometimes. I have a fantastic husband who knows how much pain I'm in at times. Of course there are folk who say I look well and should be able to work, play,make plans etc but they don't see the days (many more bad than good) where I'm hobbling, walking sideways upstairs, unable to turn a key and when it takes an hour to get dressed. Ah well, it's no good moaning about things, I hope one day the medics find a cure! Good wishes x

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