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Did not work for me, I had to stop as I had too many severe side affects

lol! Fame at last! I’m here, watching on catch-up.

What are the treatments for lupus If hydroxychloroquine and dapsone give the patient bad side effects?

Have you been dealing with back pain that just won't go away?

Have you experienced lung issues while managing Rheumatoid Arthritis?

Have you or a loved one been affected by sarcoidosis?

Have you ever experienced heel or tendon pain? What treatments have worked for you?

Do you experience joint pain, especially at the end of the day?

Have you ever received a positive ANA result and felt confused about what it means?

Have you ever experienced persistent eye pain or blurry vision?

Thanks for bringing attention to this disease. Your other videos have been really helpful, and I've gone to my GP and other specialists, armed with the information from you. I have been waiting to see a rheumatologist for so long now, and I feel like I am speeding to going off the deep end mentally.

In my 30’s, I was getting shooting pain in my joints, not related to any injury and my feet were swelling in the evening. I had an office job, so was not on my feet much during my work day. I went for blood work many times while the rheumatologist tried to narrow down what was wrong with me. It was a process of elimination and at one point narrowed it down to rheumatoid arthritis or lupus. Another round of tests eliminated arthritis, which left Lupus and I did fit into enough categories of symptoms. So my treatment plan was based on me having Lupus. I always tested positive for ANA. For years after I continued to test positive for ANA. Jump forward, I moved back to where I was born - no longer on municipal water, on our own well and I felt better and stopped taking medication prescribed. I wondered whether treated water was part of the problem I had. In my late 40’s I was starting to get aches and pains again so my GP referred me to a rheumatologist to get me back on track with Lupus treatment. I had a consultation with the Rheumatologist and she suspected I might have mixed autoimmune disease. She sent me for bloodwork. Nothing showed up in the blood tests to indicate that I had an autoimmune disease. I no longer had positive ANA result. She determined I did not treatment from her and that was the end of that. I did not advocate for myself any further, but I am in my mid-50’s now and I still believe I have something wrong with me but no idea what. How can I get a doctor to investigate further?

Reply ❤🙏

The best Dr ever! She knows her stuff and is able to explain in an easy to understand manner. 🎉

Good afternoon, Doctor. This is a subject close to my heart because I undoubtedly have GPA vasculitis but have never had more than a weakly positive result for ANCA PR3. Thanks for talking about it. Keith.

Thank you for the concise summary of foods to eat !!

Hi, Doctor. I’ve seen my consultant today and she’s delighted with my recovery from GPA vasculitis. I’m off steroids, my ANCA is zero and has been for months. Now all I have is osteoarthritis in my wrists and, to a much lesser extent, in my knuckles and knees. It still makes me smile when I think back to my diagnosis when I was asked what I did for work. “Engineer.” I said. “What did you expect then?” All said with a grin. Humour has helped me along the way.

LOSE THE BLOODY MUSIC !!!!!!!!

If Humira doesn't work, what biologic do you find the most helpful for enthesitis?

I just about cried when you described the symptoms of the first patient. I am trying to find a private rheumatologist in Western Australia, as my hospital doctors just pick and choose my symptoms, to fit what they think is going on. I started getting autoimmune symptoms 20 years ago, but in the last nine years, i have become progressively worse. When the ear pain starts, i can't touch anywhere in that area. It feels like the inside of my ear is crunching and twisting. I can't wear my glasses or headphones (i can't wear earbuds at all). My eyes feel gritty are sore most mornings, and i suffer from chronic fatigue and brain fog. I have heaps of other symptoms, and my doctors are going with Lupus or Sjrogens disease. I'm at my wits end, and feel like my life is slipping away from me.

I can’t understand the names of the drugs…especially the antidepressant

Looking Good

Im terrified of taking methotrexate because I have stomach issues and IBS, any advice?

I have PM SLE. I so appreciate in depth discussions regarding the immune system. Thank you!

Hi! I think my previous comment got deleted for link. I love your channel and your office referred me to an amazing pediatric rheumatologist for my daughter! I was wondering if you could do a video on the some of the really new breakthrough treatments in clinical trials right now like: Revolobio… com 1805 and 1104 that claims to put autoimmune disease in remission with one injection. Also the Inverse vaccine looks promising. And Car T therapy for autoimmune. This one is looks really cool but it’s very risky and I hear the cost is astronomical. Would love your thoughts 😊

Hi again, I forgot to include this latest treatment for AS!! This looks amazing. Would love your thoughts: th-cam.com/video/Mko2lATSHK0/w-d-xo.htmlsi=caw2Mv0FXV92Cj1o

Yes, your excitement and enthusiasm really shows through!

Colchicine makes me weak and prednisone wrecked me. NSAIDs are terrible for the heart. Easier said than done to treat attacks safely. Trying for months to get on Allopurinol and standard flare treatments harmed me greatly.

Are you sure Folic acid every day, not one a week? Next Right after MTX? Because my doctor prescribed it once a week, like MTX. Grazie per I’ll tuo lavori.

I have positive ana 180 speckled RA osteoporosis sjogrens fibromyalgia nerothopy eds pituitary tumor slipped disks 13 bulging discs bladder incontinence inflammation of bowel my histamine attacking me breathing problems Macrosisi enlarged red blood cells mixed connective tissue disease 😢

Music is too loud!

So interesting! I’d love if you could do a similar video but for link between IBD and arthritis. You are great at explaining things so well ❤

My liver enzymes ALT and AST went very high...Doctor took me off Methotrexate because of this, but a month later my numbers are still high. Doctor told me to start taking three folic acid every day instead of one a day.

Replay

Is there a reason of why folic acid doesn’t reduce the efficacy of methotrexate ?

I started with Biologics. They worked well until they stopped working. The first one had some weird side effects, though, and I was glad to be off it. I’m guessing that I built up antibodies to them. Rather wish I hadn’t-it be nice to go back to the 2nd one that didn’t have side effects. I’m on MTX now and either it doesn’t really work or I need a higher dose-I’ll have to sort that out in a few weeks with my rheumatologist. I’m really glad biologics are available to people.

Thank you for going into detail about how biologics work. The drs never go into this detail. I always wondered how my Adalimumab has helped reduce the inflammation with my nr ankylosing spondylitis.

Thank you!!

Can you do something on biologics please

Replay

hi you are very smart any help with sjowgrens syndrome ? thank you

Thanks for talking about this :) I wish you all the best!

Was diagmosed with UCTD in 2018. I have been on imuran and working well. I have also lost 160 lbs since Nov 2020.

#replay 🎉

Thank you for addressing this disease. I was diagnosed 6 years ago and it’s horrible. Utterly painful. My rheumatologist offers me plaquenil only. I can’t take it. Broke out in terrible all over body hives, chest pain and vertigo. Discontinued the medication and no hives, no chest pain and vertigo vanished. He offers me nothing else. Must have to do with the insurance. Very grateful for doctors like you doing videos on this disease. Because it’s difficult doing research on it!

Thank you for very informative explanation! What is your opinion on Ivermectin for MCTD? Thank you

I would be interested in hearing about how RA can affect cognitive function and also about how it can affect eyesight, if you haven’t already covered those topics.

I’m so glad you discussed this issue. After years of various symptoms including plantar fasciitis I was eventually diagnosed with non radiographic ankylosing spondylitis. Initially I was on meloxicam but this wasn’t enough. I have been on Adalimumab for two years and this has helped a lot with the axial inflammation, especially in my neck. However I am still struggling with peripheral involvement in the joints you mentioned. I have been on 15mg of methotrexate for a while given by my rheumatologist to help with this. My archilles heel though is still inflamed. This seems like the most difficult area to heal. It just locks up when it feels like it. Any suggestions

Thank you so much for doing this video!! You have been sure a great resource for me to better understand what is going on with my body!! ❤❤ thank you!!!

In one of the next episodes please share some info about ankylosing spondylitis. Thanks!