3rd Rheumy says I no longer have PMR but Rheumato... - PMRGCAuk

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3rd Rheumy says I no longer have PMR but Rheumatoid Arthritis from X-rays and blood tests and prescribed Leflunomide

EngineerMatthew profile image
18 Replies

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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PMRpro profile image
PMRproAmbassador

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

healthunlocked.com/nras

It isn't quite as active as we are here but RA is their world.

VersusArthritis is also a very good site

versusarthritis.org/

and I'm sure there are equivalent sites in the USA.

PMRpro profile image
PMRproAmbassador in reply to PMRpro

PS - you will be monitored very carefully for liver effects so if they occur, the leflunomide will be stopped

EngineerMatthew profile image
EngineerMatthew in reply to PMRpro

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.

PMRpro profile image
PMRproAmbassador in reply to EngineerMatthew

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.

EngineerMatthew profile image
EngineerMatthew in reply to PMRpro

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.

PMRpro profile image
PMRproAmbassador in reply to EngineerMatthew

Why we're here :)

winfong profile image
winfong

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.

EngineerMatthew profile image
EngineerMatthew in reply to winfong

Thanks for the encouraging news

GOOD_GRIEF profile image
GOOD_GRIEF

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.

EngineerMatthew profile image
EngineerMatthew in reply to GOOD_GRIEF

Thank you so much

PMRpro profile image
PMRproAmbassador in reply to GOOD_GRIEF

Eye effects with leflunomide are rare - are you sure it is LEF you are thinking of and not hydroxychloroquine?

cmjdexterbunny profile image
cmjdexterbunny in reply to PMRpro

I was unfortunate to develop Lupus ( either on top of or misdiagnosed PMR and yes l have my eyes monitored and am on hydroxyquinolone.

Leflunomide worked well but did cause my lfts to increase so they took me off and they came back into range.

Hopefully this helps

EngineerMatthew profile image
EngineerMatthew in reply to PMRpro

My eyes are so irritated I shouldn’t drive.

been putting caster oil in my eyes to get some relief. Maybe I should stop the HCQ

PMRpro profile image
PMRproAmbassador in reply to EngineerMatthew

Castor oil?????? Do you really mean that? It has no place near your eyes, it can cause irritation.

I gather it is a bit of TikTok rubbish

ucihealth.org/news/2023/08/....

Stop it and get some eye drops from the optician or pharmacy. You may even need medical attention.

EngineerMatthew profile image
EngineerMatthew in reply to PMRpro

Only been trying it for three days and eyes feel better than they ever have.

it may be a joke. I will let you know after two weeks.

SFFo profile image
SFFo

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.

EngineerMatthew profile image
EngineerMatthew in reply to SFFo

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.

Gaz227 profile image
Gaz227

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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