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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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  • sheila65847
    sheila65847

    Posted

    Hi folks, thanks for your messages which very really helpful. I saw my consultant yesterday and received an infusion of prednisone. Also he has upped my dose to 20mg for 2 weeks, 15mg for 2 weeks then level off to 10mg daily. I see him again in 6 weeks time. Incidently the pain and swelling got so bad that I couldn't walk without 2 people supporting me. They plonked me in a wheelchair at the hospital. The steroids work very quickly the swelling has gone down and I'm in very little pain today. The down side is that I'm completely exhausted but I don't know if this is due to the recent bad flare up. All I want to do is go to bed. Is this normal?
    • wendy0409
      wendy0409 sheila65847

      Posted

      Hi Sheila,  I am glad you finally got some relief.  After the times I have had a flare up my body feels like I was just run over by a train.  I guess it is normal because the pain takes so much out of you.  I too went to the my doctor and he put me on a muscle relaxer that is making me finally sleep with out waking up crying.  I am slowly feeling like I can do stuff again.  I am taking it easy and doing only what I need to.  Good luck to you.
    • Lisa_Batts
      Lisa_Batts sheila65847

      Posted

      Well done you 😊😊

      It is quite normal to feel like you do due to the flare up. Also all the emotions that go with that and sometimes when we get the help (which doesn't just land in your lap... You put time and energy into finding out what may help then have to get the stuff whilst you are suffering terribly... Which may not seem it but is exhausting) we are so relieved (soooooooo happy to hear it's already helping... I remember the relief when I got it and it started working) our body takes a huge deep breath and all those emotions you've been hanging onto suddenly take a deep breath too and your body gets completely overwhelmed and there's your exhaustion 😊 Do what your body is telling you to do, rest, be good to yourself, feel proud of being pro active with your illness and getting a result and when your body is fully rested you will probably find you have more energy than you've had for ages. Steroids taken as you described above can actually boost your energy levels and even make you a little hyper. Your body needs to recover first though 😊😊 You've been through a lot.

      Sending some sunshiny thoughts your way

      ☀️☀️☀️

      Lisa 😊😊

  • frances66
    frances66 sheila65847

    Posted

    Hi sheila, how are you doing? Well unfortunately I had to stop taking apremilast last Monday, even though I haven't been on it long, my stomach problems was still affected, but apart from me having constant back pain, the pain was so bad I couldn't stand it. This I found out can also be a side effect of apremilast. The rheumatologist once again is going to try me on another self injection, don't know which one until I see him in two weeks. 

    This is such a nightmare!! I was awarded the PIP, lower rate for care and mobility, as I said to Robert, they seemed to focus more on your mental capacity and you driving your car, than how your disability effects yourself. Why it goes on a points system, I don't know!! 

    Let me know how you are. Take care xx

    • sheila65847
      sheila65847 frances66

      Posted

      Hi Frances, good to hear from you. I'm glad that you have received PIP. I know how traumatic it is going through the assessment process. I completely agree with you, the process appears to be weighted towards folk with mental health issues. Of course I'm aware of how disabling some mental health problems are but I think there should be more balance but it is a very difficult situation for Government, they're never going to be able to please everyone and a system of evaluation must be in place, it takes far better brains than mine to work it out! Of course there are changes forecast to the current system to enable the Chancellor to make savings, makes me uncomfortable to say the least. Don't they realise that the majority of claimants would give anything to be fit for work? It's crazy. When the benefit was DLA people used to be awarded it for life but now it's a fixed period and then reassess which is probably fairer however it doesn't sit well when I know others with PsA who have a lifetime award, have a motability car etc 😢. But life isn't fair, is it?

      I'm very disappointed to hear that you cannot tolerate Apremilast, I'm glad you are going to offered another biological. As I've posted many times, no have been on 3 DMARDs and am on my 3rd bio (Stelara) which hasn't worked yet. There is no other treatment currently available on the NHS in England so where do I go from here? I see my consultant in 5 weeks when he will decide whether Stelara is working or not. If not, obviously it will be discontinued (it has 24 week cut off point). I haven't got a clue what will happen, perhaps it will be painkillers and steroids until new treatments are licensed, perhaps I will be offered a clinical trial, I don't know. I know 2 weeks ago I was unable to walk, couldn't attend to personal care as my hands and wrists were useless (I'm sure you'll get my drift😨) and my former employer will not give me ill health pension despite terminating my contract due to ill health. I repeat, life is not fair. Am I downhearted - YES!; Am I bitter + twisted - YES! Am I going to allow the b*******s or this illness grind me down and destroy me? NO WAY!!!!!! I must be a good ambassador for our disease most, people have not heard of it and have no idea how disabling it is. It was only acknowledged as PsA, a separate disease from RA in 1973 so I just gotta help others and promote awareness. And I really need you guys and gals on this forum - I needed your support so much 9 days ago and I got it! My gratitude xx

  • lucynewas
    lucynewas sheila65847

    Posted

    Bowel symptoms are common with apremilast, but the bonus of not getting the fatigue from sulphasalazine is amazing.
  • connie28112
    connie28112 sheila65847

    Posted

    Last year, I was like you- mobility was an issue, could not walk up the stairs. When my pain was at it's worst, the only meds which worked for me: 75mg slow release diclofenac/voltaren along with 7-10mg prednisone daily. like all NSAIDs though, it is tough on your digestive system! Good luck... chronic pain is no joke.

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