RA and then no RA. Is this really possible? - NRAS

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RA and then no RA. Is this really possible?

BS-ZIG profile image
12 Replies

Hi everyone,

I have had RA since 2003. I have taken the usual drugs. And Embrel for many years until 2017. I quit. Due to other health concerns. Was not a great idea. However after being off for about 2 years with no pain I refused to start back. Yes the Doctor tried to explain that I needed to take it…..

Fast forward to 2020, I started having pain. I also decided to try a different Doctor.

My new one actually says I do not have RA. Great news to me. Is this actually possible?

Now I have more pain. The doctor says I have Fibromyalgia. On top of that I have MGUS.

But the RA, is this possible? Thanks for any reply.

12 Replies
helixhelix profile image
helixhelix

The fact that taking the drugs helped your symptoms does suggest you certainly did have RA (or similar). But for a very few lucky people RA can go into remission without needing to continue the drug treatment.

However if you still have pain then that doesn’t sound very good for you. What tests has this new doctor done to determine that it is fibro rather than a form of inflammatory arthritis, or other problem like hypothyroidism? After all fibro is a diagnosis of exclusion once you have ruled out everything else.

BS-ZIG profile image
BS-ZIG in reply to helixhelix

.Hi Helix,

My new doctor did more tests than any other doctor ever did and X-rayed every bone in my body and then sent me to the cancer institute and they did body scans and even more blood tests. Tests I have never heard of. They decided I have MGUS and the Fibromyalgia. I do not know about remission, but I had been in remission since I was diagnosed with RA. I have more pain than I ever had and that is why I changed Doctors.I have absolutely zero energy, zero. This MGUS diagnosis is even more scary the more I read about what it could become. But thanks for your reply. Now I rarely take pain pills because it messes with my sleep. I just use a hot pack and CBD. It’s too expensive to be slathering all over my body and not a cure. Thanks for your reply.

Sheila_G profile image
Sheila_G

There is no cure for RA so this suggests that one of the diagnoses is wrong.

Lizbain1 profile image
Lizbain1

How long do they think you havr had the Mgus for could that of caused the symptoms.. Mgus does not always develop into anything x

forislava profile image
forislava

Sorry to say that, I’m afraid you have RA… it doesn’t go away just like that and usually comes back with vengeance… When I was treating my RA my way, no meds, after my tests my rheumatologist told me point blank after seeing my blood test and range of movement that I don’t have RA, but double joint - too flexible… Then later on the same doc told me “yeah, it’s RA I’m afraid… That doesn’t mean that the other diagnosis are wrong, I truly don’t know, but the RA is still there and will stay for good, really sorry, wish my answer was completely different…

Libluce8 profile image
Libluce8

My OH similar experience- RA diagnosed in 2011 - but was told he had paladromic rheumatism prior in 2000 - took methotrexate with various life changing side effects - saw Professor in Rheumatology 2 years ago who put him on low dose steroid and took him off methotrexate-now told by Prof that he does not recommend return to Dmard and that most of his pain is osteoarthritis-professor was thorough in his care whilst previous RA specialist just looked at his hands (which weren’t his issue), took blood test that showed he was positive and started him on RA journey - it pays to find a specialist that will listen to you and does all the relevant tests/X-rays etc

sylvi profile image
sylvi

What on earth is MGUS? xxxxx

Wobbies profile image
Wobbies

It seems to me that diagnosis is an inexact science or art. I just take comfort that the treatment tends to be the same for everything!

Madrugada profile image
Madrugada

MGUS stands for Monoclonal Gammopathy of Uncertain Significance The uncertainty seems to be whether it will develop into multiple myeloma. I am diagnosed with RA and blood tests taken before proposed treatment with biologics also showed light chain imbalance in the blood. So I have light chain MGUS and am now checked every 6 months for life. It appears that all myeloma patients would originally have had MGUS but only a fraction of MGUS patients develop myeloma. Fingers crossed!

CripLady profile image
CripLady

Morning. I obviously don’t know the answer, but when I have done RA research in the past into things, I have come across bone marrow cancers. I think there is a lot of crossover of symptoms. Bone marrow is ‘in charge’ of immune responses. This must all be very shocking. Please take care x

KeenGreen profile image
KeenGreen

I first got RA in 2011 and then after a year, went into remission for eight years or so. It came back with a bit of a vengeance in 2020, but now under control with MTX. I understand some people can go into remission permanently. And sometimes, as in my case, it can return.

Blackwitch profile image
Blackwitch

I was diagnosed around 2005 with sero-positive RA. Since then I’ve had other things added on. My diagnosis has been changed to inflammatory arthritis and back again a few times, fibromyalgia added & then Sjögren’s syndrome. The Sjögren’s appeared last but my eyes have been bad since about 1976. I think the diagnosis changes every time I present myself at the hospital! Surely, it would be best for each person to have a full battery of tests & spend more time getting a proper diagnosis before just guessing the first thing that comes to mind. It might save money in the long run. Nic xx

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