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Biologics for Psoriatic arthritis. Looking for advice!

Posted , 6 users are following.

f70804
f70804

Hi... I've been diagnosed with PsA for almost a full year and in that time gone through a whole host of medications. Currently on sulfasalazine and MTX. Rheumatologist wants to up MTX to 25mg Ina last ditch attempt to see if it will sort out inflammation. Whilst I have seen improvements in some joints the inflammation and pain has persisted in my wrists and toes. The pain is much less now in my fingers, knees, shoulders. I am still in some presnisolone and have had several steroid injections over the past year. I am currently off work and very much floored by constant fatigue and really suffer a lot from poor concentration and memory. To be honest now these factors are the most debilitating at the moment. Just looking for some advice on the potential biologics they are proposing trying... Simponi (golimumab), etanercept (Enbrel) or adalimumab (Humira) What are folks experiences with these? Are there any that are particularly helpful with the fatigue? I also now follow a gluten free diet, reduced amounts of dairy and sugar, and take vitamin d and folic acid too. Any shared experience would be most helpful. many thanks in advance 😀

0 likes, 14 replies

14 Replies

  • karen69425
    karen69425 f70804

    Posted

    Hi, So sorry to hear that you are going through the same. I was diagnosed with Psa in 2012, and last worked in 2014. I have been on MTX 25mg and Sulfasalazine max dose for over a year and still have problems with inflamation. I started with biologic treatment in January last year, firstly with Humira which seemed to work for a while, but following an appointment with Specialist Nurse the benefits where limited, so Golimumab was suggested, yet again symptoms seem improved for a while. Started Stelara just before Christmas, have just had second injection, fingers are now well and truly crossed. I too have a real problem with fatigue, but am really strict on pacing myself. I do a little and sit alot. Hope that I have been some help. Take Care   
    • sheila65847
      sheila65847 karen69425

      Posted

      Hey there Karen,

      been thinking of you. I had second shot of Stelara yesterday. No benefit yet but understand it takes a while compared to Enbrel or Humira. The pain in my jaw, wrists and knees is horrific, I've asked to be referred to another rheumatologist, can't harm to get another opinion. Do you know how often you need to get your bloods checked with Stelara? Apparently I'm the only one in my county on it and no one seems to know. Cheers

    • karen69425
      karen69425 sheila65847

      Posted

      Hi, Been thinking of you too. Like you no benefit either, in fact at the moment worse, have had three significant flare ups. I am glad that you have requested to see another consultant. I think that I might of mentioned it, I insisted on changing, it was the best thing that I did. The new consultant, wrote to the GP saying that my condition was not well controlled when I transferred to her. I am still having monthly bloods mostly because of the methotexate. Take Care 
  • lol8
    lol8 f70804

    Posted

    Hi i inject 20 mg of mthx and it wasn't enough so i now take a biologic Simponi Golimumbah. It's worked wonders for me I don't take any painkillers or steroids now. My inflammation markets have dropped right down. The biologics are very expensive so if you are offered them I would try them good luck. Feel free to ask any questions about them.
    • f70804
      f70804 lol8

      Posted

      That's great to hear. Thank you!
  • sheila65847
    sheila65847 f70804

    Posted

    Hi,

    after 2 years of long periods of sick leave, my employer terminated my contract of employment on grounds of ccapability due to ill health. However my pension provider won't pay out as they judge I may one day be fit to return to work. I'm waiting for that miracle! Enbrel caused a severe flare of PalmaPlantar pustulosis which took more than a year to clear. Humira together with Leflunomide worked really well until I was hoping listed with severe pneumonia when all anti rheum med had to be stopped. When I restarted 3 months later,my body had developed antibodies so Humira became ineffective so I've just started Stelara. Lesson to all on immunosuppressive drugs -get the pneumonia vaccine, it could save your life!

  • KupKake
    KupKake f70804

    Posted

    Hi, I have some good news!

    I was diagnosed with PsA and put on MTX, didn't work so I was taken off everything for a year and was reduced to an exhausted wreck and deemed 'bad enough' to go on biologics. Like you I had the choice of the same 3 with no help as to which one is best! I chose Enbrel which worked on for a couple of months then stopped working so they added Mtx to it and since then I've been great! I feel so well I sometimes forget I have it.

    Prior to Enbrel and mtx I had to take a year off uni, I couldn't walk 200 yards, I was exhausted and used to just lay on my bed crying from the pain ( I know, sounds pathetic but that's how I was). Now I have taken up running, I'm fitter now than I have ever been in my life (age 42) and I encourage you that biologics can be lifechanging! Enbrel worked for me, but only with 10mg of mtx.

    Take care, xxx

    • f70804
      f70804 KupKake

      Posted

      Thank you so much for sharing a good news story!! Here's hoping there is a transformation like that waiting round the corner for me too...
    • annette25895
      annette25895 KupKake

      Posted

      Hi KupKake, I have just been diagnosed with PsA (after 3 years of being in pain due to wrong diagnosis),I am on 20mg of MTX but I feel like a zombie. No energy or life in me,I went to see my GP and she said to give it time and I will feel less tired the more I take it.What was your experience with dosages and tiredness? I had no life when I was in pain and not taking meds and now I feel I have no life and I'm on meds.I don't want to waste my life taking meds that aren't going to benefit me.

      Thank you x

       

  • KupKake
    KupKake f70804

    Posted

    Hi Annette,

    I so feel for you! That's terrible that you had a wrong diagnosis!  

    Ok, well I was in a huge amount of pain, no life, you know what I mean when I was diagnosed and unfortunately they have to go through the process of trying you on the cheaper drugs first (the DMARD's) before they can progress you to the much more expensive drugs (the Biologics) which are much stronger.  The hope is that the DMARD's will be enough for you, because the stronger drugs have more side effects etc. (and more expensive).  I was started off on Methotrexate, like you, and for about 2 months I experienced an improvement, then I got sick and had to take a week off and MTX stopped working completely!  I had to stay on it for months, they progressed me to an injection (I felt very nauseous whilst taking it) and they upped the dosage adn tried everything to get it working again and all the while my pain increased.  I had to drop out of uni, I was just sitting around crying from the pain, it was awful!  But they had to go through the process...

    I was then tried on Sulphsalazine which was awful, I was on it for about 2 days and I didn't know what was happening to me, I felt like I was in a drug induced stupor, so I came off of them.  By this time I was in a state and I was put on Entenercept (Enbrel) which is a Biologic injection, it didn't make much difference, just a bit, so they added in Methotrexate and the improvement has been life changing.  No Psoriasis (I was covered in it) hardly any pain, much more energy.  But the process to get onto a Biologic took over a year.

    When I was on Methotrexate only they said the same things to me, 'give it time', I wanted to scream at them, 'Yes, but I have NO LIFE!!!!'.  If you feel so bad they won't leave you on MTX, they will change it, but I think they made me stay on each DMARD for 6 months before they'd change it, then I had a month or two for the new drug to start working so it all takes a bit of time.

    They said to me whatever you struggled with when you weren't on meds, the worst symptom, you may still have a bit of that.  My worst thing was tiredness, I yearned for energy and had none.  Now I run (sometimes) and can do a lot more, but I'm not how I was pre-PsA.  I went out yesterday and drove an hour and a half each way and spent the day out, when I got home I am like a zombie.  I don't function, I just fall asleep.  That is as good as it gets for me.  BUT, I have no pain, I have more energy, I just know I can't push myself too much and one thing a day seems to be my limit.  And I have no Psoriasis (it's not nice to look like a Marvel Evil SuperVillain!) that has really changed my life because it was on my face.

    I really hope they progress you to Biologics soon because when I got Enbrel as well as MTX my tiredness did get a lot better, keep telling them how badly you feel, 6 months seems to be the amount of time they want you to try any particular drug or dosage for...  Or my Rheumatologist did.

    Big hugs, I hope you are feeling a lot better soon, take care.

    xxxx

    • annette25895
      annette25895 KupKake

      Posted

      Thanks for taking the time time to reply to me. I hope I get my medication sorted soon. Most of my psoriasis cleared up when I stopped eating beef and drank boiled water with blackcurrant.I've heard that eating apples causes psoriasis on the face,not sure if that's true or not. I only have it on my scalp now and it's never really cleared up.You sound like you are making progress,as you say it takes time and you don't want to spend anymore time feeling lethargic.

      Good luck xx

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