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As yet undiagnosed autoimmune disease

Hello all, I’ve struggled for nearly 10 years with symptoms that always seem to be related to RA. My bloods never show it or any other autoimmune disease according to my GP, but I had a particularly bad flare up recently and grew some rheumatoid nodules under the skin of my fingers. I have a new GP, who seems a bit more up to date and said it looks like RA, but can’t be diagnosed because of the bloods.

He put me on a course of prednisone for 4 weeks and I’m amazed at the difference it made. I can lift a cup of tea with one hand and open jars like a professional. It’s like I’m suddenly 10 years younger!

I noticed that when tapering off, my symptoms stopped really improving at 10mg and at 5mg they are slowly returning. It was my last day today and wonder how long it takes for the old symptoms to fully return? I’ve been so happy to be able to move and sleep like a normal person. Not to mention, the overwhelming fatigue that often hit me without a warning is at the moment completely absent. I’m now a normal kind of tired and I’d forgotten how different that felt.

Any advice on what to expect and things to ask and tell my GP when I see him next would be massively appreciated. Thanks!

  1. So many of us have had arduous journeys to diagnosis! I encourage you to start listing your pre, during and post prednisone symptoms. Gather an objective list of the symptoms and specific daily activities that they affect. You can then either share them with your GP through their portal or at an appointment. My RA was finally diagnosed after a hand ultrasound showed synovitis (inflammation) I think the doctor actually ordered it to prove my symptoms weren’t real!

    It seems a referral to a rheumatologist would be helpful for you at this time. There is something called “sero-negative” RA that can be difficult to pick up in labs. But a rheumatologist may see it on a physical exam. Or, help guide you to a different diagnosis if appropriate. Jo

    1. thank you for your kind reply and the terrifying article, which unfortunately I can relate to and hope I never have to get to that stage. I have mentioned seronegative RA to my previous GP who guffawed as if it didn’t exist. I also saw a neurologist for cervicogenic headaches who said that someone with my list of symptoms is usually psychosomatic. Luckily I can back up all my claims with dozens of photos, so she made a (none) diagnosis of somatic unexplained symptoms. Somewhat of a win, even if it doesn’t help!

      My new GP has given hope and fingers crossed (I can easily do that since the prednisone!) my next visit reveals a treatment plan.

      It’s such a shame that so many people have to go through so many years of being belittled by professionals who should know better.

      I am preparing a list as you recommended, with all my before and after symptoms and hopefully something good will come of that.

      Thanks again!

  2. Here is a an article about Sero-negative RA that might be helpful.


    https://rheumatoidarthritis.net/stories/seronegative

    1. thanks so much for your advice and the somewhat terrifying article, which unfortunately I can relate to and hope things never get that far.

      My previous GP told me that to be seronegative, my bloods would show nothing at all and mine are within normal range. From what I’ve read, seronegative is most likely to be in normal range, so I’m just lucky to have a new GP that isn’t ignoring the physical signs simply because the blood test doesn’t verify it.

      I will make a list of changes in symptoms and take it to my GP at the next visit. Thanks again!

    2. Hi . Glad to hear that you have a new GP that is looking at the symptoms. As noted in this article from our editorial team, which discusses more of the diagnostic side of seronegative RA, it is actually quite a high percentage of cases that are seronegative: https://rheumatoidarthritis.net/seronegative-diagnosis. The diagnostic process for RA is often one of elimination and this article goes into further detail: https://rheumatoidarthritis.net/diagnosis. For this reason, seeing a rheumatologist, if possible, can be extremely useful and is pretty essential if diagnosed. Please feel free to keep us posted on how things are going and to ask further questions. Hoping you can get some answers and relief soon. Best, Richard (RheumatoidArthritis.net Team)

  3. I agree with the suggestions mentioned above. Although we aren't medical professionals and can't give medical advice, we can share our perspectives as people who have been diagnosed with all types of RA. Many rheumatologists relay on blood tests and X-rays alone to diagnose this disease, however, as many researchers, scientists and medical professionals have found...that is typically not enough. Ultrasound can detect RA way before X-rays can in the bones and soft tissues (an interesting fact I found out way later in my journey which I wish was done for me but instead I had a four year delay in my diagnosis). That was 19 years ago. There are so many options available now to detect this and I would not stop at now at one answer. Please if you can, seek an opinion from a couple of rheumatologists and request an ultrasound as shared above by one of my team members. If you can also seek medical advice from an integrative doctor who can help you look deeper into what's going on in the body which can provide more clues. Prednisone is a wonderful medication when we need it and can make you feel like you can accomplish anything. But it's also one you don't want to be on long term if you can help it. Hope that helps and wishing you much luck in finding answers asap! -Effie, team member

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