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Psoriatic arthritis frustrated

Posted , 4 users are following.

maxine_76938
maxine_76938

I saw a rheumatologist at the spire who told  me I have psoriatic arthritis. He wanted to arrange for me to go on methotrexate s.c injections which is not the gold standard for treatment for arthritis like this, but fair enough it's the NHS and nice controls the world. Now on top of that I have severe thorasic back pain. The consultant in the NHS  refused to give me the methotrexate saying I was to fat, I'm NOT I wear a size 16 and exercise daily, I have a gym membership and walk about a mile a day, he said that I would have fatty liver disease (my LFTs are fine)  and it would be worse for me than not having treatment. I'm disgusted that they won't give me the treatment that the spire consultant said to give me. The NHS has to dish out the medication apparently. The private system can't give scripts for it. So this guy gave me some kenalog which helped a lot my pain was reduced by half. The consultant did some MRI scans and an hlaB27 test all came back negative and I want to cry, my back shows no enthesis so I can't have the biological therapies (so I believe). Would it be possible that the injections of kenalog which is a steroid could have affected my mri scan reducing the amout of inflammation on my thorasic spine? How long do these injections last? He said I had two issues one mechanical and one inflammatory. According to the consultant at spire my pain in my ankles was due to the psoriatic arthritis, I have nail ridges, and I also have areas of psoris not a lot just a few places here and there mostly hairline and elbow. I'm so frustrated I want it give up. My GP is inept and thinks I will become a drug addict and I finally got a diagnosis for my pain and this happens. I think there are two problems here one the psorisis snd two mechanical with the discs in my spine. What do i do now? Should, I see someone else at the spire or should I just ask for another MRI after the steroids are out of my system totally? 

2 likes, 9 replies

9 Replies

  • carole13351
    carole13351 maxine_76938

    Posted

    I saw my rhuematologist yesterday and he was most put out that I still am reluctant to take any medication for the PA in my hands. I have researched the drugs and in my case the benefits of taking these powerful life changing drugs is not enough to outway the possible/probable side effects. My fingers started swelling about 4 years ago triggered in my opinion by the menopause and at this moment 3 of my fingers have been through the swelling/ joint damage process but now in these three fingers the swelling has burnt itself out. I am left with 3 slightly bent, slightly stiff fingers which I would say I have 90% normal use from. At this time I have 2 other fingers which are active and look like are going through the same process. So for me it's a case of suck it and see as I do not want to take the risk or have the worry of what methotrexate and other similar drugs are doing to my body. In my opinion NHS docs are too eager to give you drugs and get you out of their rooms than to properly sit down and weigh up the pros and cons. For anyone who is just starting out with PA in their fingers I would say try not to do anything repetitive like using a keyboard to type as I believe this is what has caused my fingers to bend. Good luck everyone x
    • hope4cure
      hope4cure carole13351

      Posted

      Carole..

      I feel the same way. Yet I did finally try Humira when my hands began to get so bad I couldn't open them..

      now they r better. 

      It's all a very personal decision.

      CHEERS

      CHOTTI

  • donna87489
    donna87489 maxine_76938

    Posted

    I have had psoariatic arthritis for years.   Had to stop methotextrate years ago because of elevated liver counts.   Tried many other meds nad had side effects but finally the Humira worked for me.   I  had to stop it for awhile becaise it wasn't working as well.    I am now on one Humira injection every two weeks and am just weaning down on prednisone again after a bad flare.    It's an on going battle but I am grateful for the good stretches that Humira has given me.
    • hope4cure
      hope4cure donna87489

      Posted

      Donna same here boy do I hear u on that statement..

      take care CHEERS

      HOPE

  • CA-Lynn
    CA-Lynn maxine_76938

    Posted

    Methotrexate is a time-honored treatment that most rheumatologists use to start with for this disease. Why use a biologic if a DMARD will work, is the mindset. But you have different rules in the UK [I'm in the US].

    Anyone with this disease who is NOT on a DMARD or biologic runs the very real likelihood of irreversible joint damage.

    While Kenalog injections in the joint are a godsend when all else fails, you can only get two shots per year per joint, else the tendon may tear. But steroids are never the answer for long term use because they do not halt the progression of the disease. That's what you need the DMARD or biologic for.

    Get the best rheumatologist you can find.

    • maxine_76938
      maxine_76938 CA-Lynn

      Posted

      I have a worlds best rheumatologist who has pioneered some of the theories that people all over the world rely on for diagnosis. I have had 2 kenalog systemic injections not in joints, it worked amazing and was a god send for me as I was unable to walk up and down the stairs. He wanted to give me mtx but the professor decided to he wanted to give biologicals making my life hell and wait for the tests. We will have to see what he says on august. 
  • david60784
    david60784 maxine_76938

    Posted

    Hi Maxine

    Firstlt I had Kenalog injections in the bottom many years ago for hay fever.

    Yes my psoriasis did get bettter but when the injections war  off after 4 months the psoriasis came back very badly. I was lucky one of my clients had a pharmacy I borrowed one of his medical books looked up kenalog photostated the page took it to my GP never had kenalog again. I know of people ( first hand  ) who are over 20 stone and the consultant has put them on methotrexate. You will need blood tests every so often. Before your MRI SCAN the person doing the scan should have asked what medication you where on. Back to methotrexate I would never go on it again in my opinion we are just a ( number ) consultants use the theory you should not die through taking methotrexate alone.

    Nice to chat hope you get sorted very soon.

    Dave x

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