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Reluctant Rheumatologists

Has anyone else found it difficult getting a treatment regime from rheumatologists/doctors? I'm not taking anything other than CBD oil (currently can't afford more), Panadol and Tramadol for pain. Anti-inflammatory meds upset my heart so can't take them as do the usual Mtx, Leflunamide etc. I've been refused Biologicals again and again - probably because it cost the government a lot on PBS. I haven't been able to stick to a diet yet. All it takes is those pesky flare days and I'm back to miserable and all diets go out the window. The PsA keeps spreading and I can't stop it - I now have sore, watering eyes when I flare and my vision goes supper blurry. Has anyone got any tips on how I can convince the rheumatologist I am worthy of Biologics? How did you guys get access to it?

  1. Hi . Has your doctor given you a reason for refusing biologics? They can have a lot of side effects. Communication is so important in a relationship with a doctor, especially when that relationship is expected to be long-term. Your doctor might feel the risks of biologics are not worth the benefits given your heart issues, but that is something you should both feel comfortable discussing. If you feel you can't talk to you doctor, you might want to consider a second opinion. Biologics are expensive, but most companies have programs that help people with low incomes or poor insurance coverage pay for them. Here is an article from one of our advocates about paying for PsA treatments: https://psoriatic-arthritis.com/living/paying-for-cost-of-psa-care/
    I would start by asking your doctor to be direct with you as to the reasons biologics are not appropriate right now, and then go from there. Best of wishes! – Lori, Psoriatic-Arthritis.com, Team Member

    1. Thanks Lori. The Rheumatologist says I don't qualify as I don't have psoriasis nor inflammation in my sacroiliac joints. I have found the medical application forms for doctors online and it mentions 'tried and failed Mtx etc' but nothing about psoriasis or MRI proof of sacroiliac joint inflammation. I've changed rheumatologists (again) and hoping for better luck with any treatment that is not just a cover-up pain killer but actually slows things down. My health insurance is hospital only and doesn't cover medication costs nor does any company help out with costs where I live. I've not seen any trials either so can't get access that way. The PBS will pay for 'severe arthritis' so maybe I'm not bad enough yet. Although the pain very much limits general day to day activities and I don't like the side effects from Tramadol. I'm hoping this new rheumatologist may at least allow me to experiment with combination therapy or a low dose Leflunomide. I have a cousin with PsA and he has great success with combination therapy. And before you ask, he lives in a different state so I can't see his rheumatologist. My doctor has given me a referral to get a cortisone injection in my worst joint (knee) which has helped in the past so hoping it gives me a little break as every day ATM is tricky. Been trying to get on top of things for 14 years and I'll get there eventually but getting mentally and physically exhausted now.

  2. Hi ! That all sounds frustrating and complicated. I feel for you. I hope you have better luck with you new rheumatologist. We do have one advocate, Cynthia Covert, who treats her symptoms naturally. If you put her name into the search bar, you will get a list of her articles from our archives. Maybe you will finding something new that will at least bring you a little relief. Keep me posted. Warmly – Lori, Psoriatic-Arthritis.com, Team Member

    1. I was diagnosed with Psoriatic arthritis after consultation with the second rheumatologist. The first one sent me away after examining me and saying I didn't have an autoimmune disease. My symptoms were probably the result of a viral infection. Twelve months later when symptoms were much worse I saw a second rheumatologist, who had a very sympathetic approach. She examined me and took a history and diagnosed PsA.

      Then we moved to another state and with COVID I was not able to connect with any rheumatologist in person, only with telephone consultation.

      I have tried several different combinations of medication. Some were ineffective or I reacted to. This year I have been suffering more with pain, not just in my joints, but more generally. I've been needing stronger pain medication to relieve pain. I use a wheelie walker so I can stay mobile, attend hydro and physio and consult with my GP weekly.

      My GP recently told me that a rheumatologist was resuming working in our area, so I visited him this morning, hoping for a second opinion or for him to take over my care.

      After examining me and taking a history he told me he didn't thunk I have autoimmune arthritis and I shouldn't be taking so many pain killers. Imagine my shock. He said he would contact my other rheumatologist to find out more about my history.

      I feel so dejected. I left there with the feeling he thought me a mental case with a drug problem.

      I don't want to see him again. I felt he was hurrying me, wouldn't let me think or finish things, and cut me off a few times.

      My GP referred me so now I feel in a bind. Should I cancel this nee guy and travel back to see the rheumatologist who first diagnosed me? I am reluctant to try out yet another rheumatologist.

      1. In Australia there is a criteria for eligibility, has to be severe enough- 20 affected joints, tried methotrexate and Leflunomide etc. My Rumo said my PsA isn't severe enough, SIJ's are okay etc. (even though I was in a lot of pain everywhere). I'm currently on high dose MXT and Leflunomide and it's helping a lot, just the diarrhoea side effect is annoying, inconvineint.
        If your not happy or comfortable with what your current rumo, I highly recommend seeing another rumo, even just for a second opinion- im onto my second one, my first rumo was quite vague (said, 'just push through the pain'?!), kept giving me scripts with not much of a plan- I felt there was no solution for me. With my current rumo, he explains things, and gives me a bit of hope, even when he said I wasn't eligible for Biologics. He explained about the body and pain channels, and trying to calm the CNS, having been in pain for so long. Even taking Panodol Oesteo 2/3 times a day, just to help settle it a bit. GP also recommended a book about managing chronic pain, other things I could do for the pain.
        I think having a rumo that is clear, has solutions and explains things is so important in giving you hope about the future, that's PsA is managable. From my own research, and being in so much pain and not being able to walk, I was sure I needed Biologics, and when he said I wasn't eligible I was devestated. I was sure it was my only solution, but now have a couple more. I hope you can find a second, third opinion- a rumo who can explain things specific to your unique situation, and get some answers, solutions for your pain.

        1. Thank you for sharing your story. Nice to hear from a fellow Aussie!

          I decided to stick with my original Rheumy for now and plan to travel interstate for f2f consults as needed.

          As far as I know there are no other rheumatologists that visit our area (the beautiful but remote far south coast of NSW). My sister in law has severe fibro and travels to Canberra, also interstate, to see her rheumy.

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