does this stuff work? The side effects for liver damage potential looks scary to me, someone that once was misdiagnosed with liver cancer and sent to Cleveland for transplant. Yes, fatty liver at age 59. Don’t drink or smoke. Pre diabetic/diabetic
Also, does PMR segway into rheumatoid arthritis?
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EngineerMatthew
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Not so much that PMR morphs into RA but that late onset RA can present looking identical to PMR with absolutely no distinguishing features until the erosion appears in joints and shows on imaging which apparently has happened.
Leflunomide is a DMARD - Disease Modifying Anti Rheumatic Drug - and its purpose is to reduce the erosion of the joints in RA. Methotrexate is another and it probably is the main factor that RA patients with the dreadfully distorted joints are no rarely seen. These two are probably the most used first line drugs in RA.
This really isn't the best place to ask about leflunomide and whether it works in RA - it is used occasionally in PMR but the effect is different, PMR does NOT destroy joints so that effect isn't required. NRAS is probably your best bet here on HU
My sincerest gratitude. I thought the other Rheumy’s got it right because of the immediate almost complete relief from 20mg of prednisone but yes all my joints are wacked. When I walk I hear and feel it in my ear spine cracking with each step. I figured the X-rays on hand was conclusive. I kinda knew something was wrong in my hips at age 45, could not consistently ride on the side of my motorcycle to get the bike hard over on its side.
Shame you hadn't been investigated then - the sooner the treatment is started the less damage is done. As I say again and again - yes, a very speedy response to pred is a brick in the wall of evidence but it isn't 100% conclusive and you are an example of that. It is called a polymyalgic presentation and it does sometimes respond dramatically to pred.
Once you are adjusted on your medication you may be able to go back to work - I do hope so.
You have been so kind. I was hoping it was PMR that would go away sooner or later. I seriously was convinced it was. The flare ups are brutal that sounded so much like what these people have to endure. The rapid fatigue that in itself is debilitating. Always get a 3rd opinion because now a 2nd opinion is not conclusive.
I've been taking leflunomide for LVV/GCA/PMR, mainly because I had some severe side effects with Actemra. Seems to be keeping my numbers down, and no bad side effects.
Make sure you get an eye examination shortly, and that you repeat it every 6 months or so. Leflunomide can cause some pretty serious eye damage, so you'd want to catch that early. Make sure you tell the eye doctor about your medication and diagnosis so they know what they're looking for.
Like yourself I was previously diagnosed with PMR and likely GCA and responded to steroid therapy. Unfortunately things got worse and Ultrasound imaging revealed it is either seronegative RA or more likely Psoriatic Arthritis. Have now started Methotrexate. Really just relieved to finally know what's wrong and although the treatment may have side effects, that it will slow the progress of the disease.
I never was diagnosed with GCA but three months before the first PMR symptoms I could not chew on the right side. I assumed TMJ and just drank liquids. I am off Prednisone for 5 weeks now but too miserable to work. Least now I can sleep anytime. Immune systems are complicated. Frankly I think the experience of the Rheumy is likely the most important thing in correct diagnosis. This guy Rao is my age. My Joints shape? I could not sneak up on a deaf and blind person. My gut tells me that my lot is to be miserable until that long dirt nap. I will try the Leflunomide until I can not afford the blood tests for liver or make it to 65, 5 more years when we have some income.
I was diagnosed with PMR in 2015, due to the rapid response taking pred , 2020 I was told it’s SAPHO syndrome with secondary Sjogrins syndrome not sure about spelling with that one , anyway long story short my Rheumy retired about 12 months ago my new Rheumy after looking at my notes scans etc said you have had RA the whole time since I first presented. Even back in 2015 I told them I was having joint issues all bilaterally, I’ve been on MTX for 18 months now only 10mg , and a low dose of pred which I can’t get off what ever method I use . Looks like I am going to have to increase the MTX asap all my joints are cracking painfully . On a positive you have got a diagnosis early, hopefully your joints won’t deteriorate now you have the Dmard’s , but get off pred if you can . Good luck 🤞
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