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Hi, I'm new here and just been diagnosed...

Posted , 11 users are following.

Zita2323
Zita2323

hello everyone, my name is Zita and I'm 40 years old, mum to 2 girls 16 & 11. I just been diagnosed with psoriatic arthritis and I'm so scared and confused, I'm looking for people in the same boat to help me understand what I'm going through. I have suffered with scalp psoriasis for about 10 years. For about a year I had the odd pain here and there, but nothing I thought was worth going to the doctors about, but 6 months ago my knee started to hurt more regularly but I still put it down to getting old. One night I woke up in excruciating pain on my knee, could not move it at all, took a couple of hours with a bag of frozen peas to ease the pain and after taking painkillers the pain went and I carried on with my life. Just under 2 months ago that same pain came back but not just my knee, my shoulder, my elbow and my neck were affected too. I felt like I was paralysed by pain and had to be practically carried to the GP. That was the first time I ever heard of PA...I didn't even know it existed. My GP suspected it and sent me to loads of blood tests, and prescribed a load of tablets. A week later the pain was not easing so back to the GP and this time he gave me stronger co codamol and the pain started to get better. Another week and the blood tests results came back and showed inflammation, very low vit D and folic acid, so GP gave me supplements and decided to give me a 3 vial steroid injection, which he was hopeful could relieve me of pain for a month, while I was being referred to the rheumatologist. I was pain free for 3 days and then it came back with a vengeance. Back on the co codamol and naproxen but the pain was easing just a bit, I couldn't sleep as I any position made something hurt. GP asked for an urgent refferal, but that got lost and despite me trying to get things moving, nothing was happening fast enough so I went private, got an appointment within 2 days and a diagnosis. I started methotrexate 2 weeks ago, which makes me very sick and  diarrhoea for 3 days, then it settles. Still on co codamol for pain as I refused the steroids the rheumy wanted to prescribe. My life has been turned upside down, almost every day I wake up with different joints hurting. I feel like the pain is eating me away, it's so disheartening when I can't even prepare my child's lunch box because my hands won't allow it. I work through an agency and they are on the verge of getting rid of me because I have taken the odd day off when the pain is just too much. I have been on anti depressants for years and I feel my depression getting worse, I don't want to leave the house or see anyone because I feel so so low. Will it ever get better? Any advice is welcome xx

3 likes, 32 replies

32 Replies

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  • lucynewas
    lucynewas Zita2323

    Posted

    Steroids can be very helpful in the short term to reduce the inflammation so that the DMARDS can start to work.  Depression is a co-morbidity for PsA, so I'm not surprised.  try to split your methotrexate into 2 x 1/2 doses eg on monday / thursday or tuesday/Friday.  if you are on 20 mg once a week, do 10 mg twice a week.

    By all means PM me if you would like to chat - I recognise your pain!

    Lucy

    • Zita2323
      Zita2323 lucynewas

      Posted

      Hi Lucy, I am so scared of steroids that I will try anything and only as a last option will I go there. I didn't know I could split the dose of mtx, will try that, it might make the side effects a bit more bearable. I might take you up on that offer of a chat, thank you x
    • lucynewas
      lucynewas Zita2323

      Posted

      Short term steroids are not the end of the world. Especially if you feel better. Are you in usa or uk? I will send you some counselling links.
    • jane_58649
      jane_58649 Zita2323

      Posted

      Ah it's so horrid and the worse thing is you don't know when it's going to improve but it will for sure. What about your local hospital do they have a support group ? I know we do in our local hospital which is Chorley in lanca shire it's worth finding out as only people going through it can understand. Does anybody on here actually know if it burns itself out !
  • robert271163
    robert271163 Zita2323

    Posted

    I had a week in Hospital for intense hydo and physiotherapy it was great while i was there very little pain but 3 days after i came out i was in more pain than ever, the pool was heated to 33 deg So yes exercise does work if done correctly but sadly not everone has a pool heated to 33 
  • christopherV
    christopherV Zita2323

    Posted

    The most common treatments for mild cases are medications that you put directly on your scalp. If you have a more severe case or have psoriasiselsewhere on your body, you may need a medication that treats your whole body. You can take these medications by mouth or injection.

    If your psoriasis doesn't respond well after repeated use of one medication, your doctor may replace or combine it with another type of treatment.

  • shaziebabes
    shaziebabes Zita2323

    Posted

    Hi there, your story is similar to mine. I have had mild psoriasis for 20+ years and was diagnosed with PSA 7 years ago. I too had no idea that the condition existed. I have been on methotrexate since diagnosis & it works quite well for me , though I had to switch to injections about 3 years ago, as the tablets were making me sick. I am 45, female and have two children. I work part time as I do not feel physically able to commit to full time. Make sure you tell your Rheumy if you continue to feel sick on mtx: the injections should stop that. Mtx will probably improve your psoriasis as well, so thats good news. It is hard to live with this condition but as other people have suggested, pace yourself & try to help others to understand how your condition affects you. Btw, have you tried using Alphosyl shampoo for your scalp?...it really helps & if I rub it over my elbows , it reduces the redness there too! Good luck x
  • justinh
    justinh Zita2323

    Posted

    Hi Zeta,

    i went through several different meds.  I suggest that if one does not work then move on to another one.   I finally found one that worked for me but it took a couple of years.  I started enbrel about 10 years ago and it worked for me, but it is expensive.   You need a good medical plan.  It made my psoriasis go away too.

    justin

  • Lisa_Batts
    Lisa_Batts Zita2323

    Posted

    Oh Zita

    My heart goes out to you. How scared and alone you must feel yet you are brave enough to want to discuss it with others to try to find out what is the best route for you. That is a positive in itself 😊😊 There's lots of good advice already on here but not everything works for everybody so try some and see what works for good. Good on the person who does exercise all the time and great it works for them but for myself personally my pain prevents me from this and the fatigue. You have been diagnosed with a chronic disease with vile treatment but don't let that be the end of the story 😊😊 methotrexate (MTX) made me so I'll when I first started taking it but now I couldn't be without it. I had 6 weeks off it due to infection and was begging to go back on it! MTX (despite what the leaflets say) can take up to six months to start working fully. After 3 months you should get an indication (an easing of the joints) to show if this is the correct medication for you. I've never had the injection but a lot of people turn to that when they suffer with bad nausea. I eat ginger biscuits and citrus fruit! That works for me. Also I have heard before about splitting the dose of MTX but I would always check with my Rheumy first. This is a powerful drug that if taken incorrectly can lead to a build up of it in your body so always check.

    It does sound to me like you are having a flare up which in some ways is good because this is the worst you will ever feel. It will ease. You will feel better. Depression is a natural part of being diagnosed, treated and suffering the disease. As you learn what what's for you and get used to the medication this also gets easier. It just becomes a part of life. The flare ups are horrendous and my thoughts are with you. Make sure (when you have a grasp on it yourself) that your loved ones understand. Sit them down and talk with them. Don't try to be too proud and a hero. Learn to accept help when you need it.

    I'm sorry this is so long.

    I wanted to try to give you as much information as I could.

    18ish months down the road for me and I have a good life. I have more good days than bad. I do myself no favours by overdoing things but also have the luxury to rest to recharge.

    I would strongly recommend you get signed off from work and a letter from your specialist. For now 😊😊

    I wish you luck

    💐💐

    Lisa

  • Zita2323
    Zita2323

    Posted

    Thank you all for your advice and kind words. I don't know why but I am unable to reply to each comment, any ideas?  Took my 4th dose of MTX, sickness has got better however I continue to have diarrhoea and fatigue is increasing, I changed the bedding yesterday and I felt like I had done a days work. The pain comes and goes but I'm having pain in more and more different joints, the worse being my wrists and fingers because I get to the point where I have no grip and this makes it almost impossible to do anything. Also I am being sterilised in a few weeks, does anyone know if I will have to stop taking MTX? Many thanks xx
    • Lisa_Batts
      Lisa_Batts Zita2323

      Posted

      I so want to give you a magic wand. Unfortunately this feeling is perfectly natural for the amount of time you have been on MTX. If it's the drug for you, it will get better. If after 3 months you still feel this bad I would go back to your Rheumy.

      As for being sterilised I would get in touch with your Rheumy immediately. This is pure guesswork (but educated with my experience) that you would definitely stop MTX for that as the risk of infection will be very high. The reason I say speak to your Rheumy ASAP is he may want you to have been off it for a length of time before the op and maybe after.

      As I said Zita this is guesswork but you stop taking it with any infection or if there could be any chance of infection.

      Best of luck

      Lisa

      😊😊

    • Zita2323
      Zita2323 Lisa_Batts

      Posted

      Thank you Lisa, I have an appointment with rheumy tomorrow and a list of questions. 
    • Lisa_Batts
      Lisa_Batts Zita2323

      Posted

      Good luck. I always take a list in with me.... The minute I get in there I forget everything.

      I hope you get some answers

      😊😊

      Lisa

  • Zita2323
    Zita2323

    Posted

    Saw rheumy yesterday and it's not great news. The PSA is spreading to other joints rather quickly so he increased my dose of mtx to 25 mg once a week plus he has prescribed Prednisolone 20mg a day. Has anyone been prescribed this med? On examination of my joints he pointed out how my big toes are turning in and the distance between them and the next toes is increasing. I also mention how tender my body is and after pinching and poking, he said most likely have fibromyalgia too. neutral He said the continuation of diarrhoea is linked to my IBS, to which I could take some medication but I refused as for the last 8 years I have managed to control it with my diet so I will find a way around that.  I really hope all this gets better at some point as I am not coping well with life right now. sad
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