I have been treated for RA since 2003. I took Embrel until 2017 and quit feeling like it was compromising my immune system. I took Orencia shortly. But I quit. Last year I started getting more pain. To make a long story shorter, I did not to go back to the Clinic that had been treating me all these years. I got used to one doctor and the. She retired, then another, and then 2 more. The last one I was not too fond of. So I decided to find another doctor and my new one was recommended. My initial exam, he says that for someone with RA for all these years, I sure did not look like I had it. So of course he did all the testing. The results were all I did not have RA.Is this possible? To have it and then not have it. He thinks I have Fibromyalgia. I am happy I do not have it, but now I am having big time pain… Has anyone had this happen? Thanks for any replies.
Barb
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What testing did he do? To look at me, and look at my bloods you would not think I had RA as I am so well controlled. The only signs now are on MRI and ultrasound, when the small erosions can be seen, and my anti-CCP blood test.
Were you sero-positive or sero-negative to start?
However you could be one of the lucky few whose RA remits completely!!
Hello Helix, I had an MRI earlier this year. He X-rayed just about every joint in my body.
Sorry but I do not know what sero-positive or sero-negative even mean…My doctor said that I did have a slightly higher inflammatory factor. The blood tests were normal. No clear damage from Rheumatoid. But I do suffer from a couple of different types of Arthritis. However I flunked one blood test and he is sending me to a Hematologist, but I was not able to get an Appointment until June. I am sure this is unrelated to my RA. So I am somewhat worried.
Since it sounds as if you have not had a smooth journeys with your doctors I would really recommend that you push to get involved. Ask for your blood test results, keep track of them, and ask lots of questions.
Somewhere in your file it should say whether you are sero +ve or -ve. These are antibodies, and if you are sero +ve it is much, much more likely that you do actually have RA. And if you have slightly high inflammatory markers then your blood tests are not necessarily normal!
I have naturally low levels, and it is only because I keep track of them that I have been able to convince doctors that what is only slightly above normal for most people is actually very high for me.
I have all my blood test results since 2008. I will ask my nurse what those test are maybe here in the US they call it something else.Interesting….. Thanks
Hmmmm. It’s an odd one. But I’ve also had RA a pretty long time (15 years) and have no visibly deformed joints from the outside. Scans show different. Blood tests always normal.
I was diagnosed with fibromyalgia a couple of years ago on top of the RA. I’d suggest you join the FMA UK forum on here if you want to hear about tips for dealing with the pain - even if the diagnosis isn’t entirely concrete yet x
Honestly, I think anything is possible because these diseases are so hard to diagnose. They can test your blood for RA factor and if it is positive you are seropositive. If your blood work is normal but you have symptoms of RA then you are serionegative. It is astounding that the other doctors kept treating your for something you don't have!! Sounds like you have a good doctor and he will be able to get you sorted out. I really wish I could find out that my RA has disappeared,
Thanks for your reply smilelines,I am somewhat pertrieved these days, but this too shall pass… That is good news, however I have something else, not sure yet…
Hello BSherzig, just to clarify, can you tell me how you were diagnosed with RA initially, bloodwork, symptons and what were they, and were you diagnosed by a rheumatologist or at GP, thank you
Back in 2003, I had a low grade fever for a long time and then pain in my shoulder. That was all. My regular MD sent me to a infectious disease specialist, and nothing wrong there. Then they sent me to the RA doctor. They did the usual round of tests and X-rays and MRI. They came up with RA. Of course they started me on the Steroids and Methotrexate and Plaquenil . I hated taking all of those so they put me on Embrel. I quit the Embrel in last 2016 because I felt my immune system was compromised. Another long story. I went for blood work every 6 months until last year. So for years I never had any pain what so ever. They always said I was in remission. So after a year without, and no pain, the doctors talked me into taking Orencia. They would say that just because I did not have any pain if I did not take meds for my RA that my joints would be damaged. I think I on Orencia just about 2 months and quit because I had other health problems and did not want to take any meds that I felt I did not need. The RA doctors would say I needed to take this stuff. I did not do it. So In January 2020 I woke up in severe pain and was very sick. Now I know it was Covid. Could not taste and my eyes were painful and dripping. It was horrible. My husband got sick the next day. With severe pain all over and his sinus’s were in pain. We were out of it for a good month. I was mentally out of it also. I remember I saw the date was January 12, and I actually thought it was 12th of February. I was pretty sick but I went out and bought my little niece a Valentines card and rushed to the post office to mail it. We both got well and by that time Covid was in the news. But since then I wake up with awful neck pains and arm pains. My husband finally put his foot down and assumed my RA has flared up finally. That was when I decided to go to a different RA specialist. And he did all usual tests and finally made the comment that My body did not look like it should after 20 years with RA.
He did all the normal tests and says I do not have RA.. I totally believe him.
He is a professor at the teaching University for RA. Unfortunately now he would not give me a prescription for Tramadol. Only for a prescription for this topical gel stuff that is definitely not as good as my CBD. I have to quit typing. But now I am more worried because he is sending me to. Hematologist.
My goodness. That is upsetting. So did you have RA that went away or were you misdiagnosed in the first place. How can you know? Since your recent X-rays and MRI were normal either the medications worked remarkably well or you have not had RA for many years. Jeeeez. I guess all you can do is move forward with this new doctor but thank goodness you stopped taking medications in the past that you thought you did not need because it sounds like you indeed did not need them. I hope your hematologist appointment is very soon so you can find out what is going on.
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