NRAS
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What to expect

Hello everyone:

I posted back in September saying how I went for a checkup at my GP and I had been complaining of lower back pain/sciatica for over 2 years. I’m allergic to aspirin so can’t take anything OTC other then Tylenol. Over the 2 years he did give me a PT script but of course never went. I’m 48 and suffered all my life with severe debilitating migraines up until 42 where they have finally become under control with migraine meds. So basically I’d rather suffer with this back pain everyday then have even one of my old migraines. So in sept they did a blood test and some nurse called me and said “you tested positive for RA so go see a rheumatologist”. I was shocked. Symptoms are still the same as the past 2 years no joint pain just lower back. My appointment is finally 12/6 so I’m wondering what to expect?

More blood tests? Will they take X-rays? Will they do anything to relieve the pain? Is my GP’s blood test iron clad? If it is RA how soon will I start feeling it other then my lower back? I’m getting nervous now that the appointment is approaching. Thanks all!

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Also I live in New Jersey USA so I don’t know if things are done differently then in the UK?

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There are followers from the US on here. I would think it's different to the UK as it's a different health system.

Best of luck with your appointment. Dress casually with easy to take on and off.

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The basics are pretty similar in the UK and US, it's the details of who provides services and how they are paid for that changes.

Anyway, if the blood test you had was the rheumatoid factor (RF) then it's not a cast iron test. Many people have it, but don't have the disease. And equally many people don't have it and do have the disease.... but it is of some use as diagnosing some of these inflammatory auto-immune diseases can be like a detective story. So the more clues you have the more likely you are to find the right answer/culprit.

So you rheumy appointment will probably take a history, so note down symptoms and time so you have it in front of you. They might examine you physically, so wear your best underwear. And they may well do further blood tests and x rays. If your pain is mainly in your lower back then they might do a gene test (HLA27) to investigate the possibility of a similar disease called ankylosing spondylitis. But it would be odd to have that as not normally associated with a positive RF test.

And as for the future, there's no way of telling right now. You could have a very non active form of the disease that doesn't change for years. Or it could accelerate. All I do know if the sooner you get a clear diagnosis the better as then have the best chance of being treated before you get any damage. And the best chance of getting suitable pain relief.

And of course your lower back pain could be just that, like a slipped disc or similar, and the RF test was a complete red herring! But a rheumatologist should be able to tell you.

Good luck

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Like what helixhelix says this disease is a mystery.

I was negative to RF but positive to anti CCP.

I had similar problems 6 years ago. Had RF checked which was negative so my problem was put down to carpal tunnel. Had physio and also changed jobs where I didn't have hands on work anymore. Was office based. Symptoms went. Until mid 2005. Changed jobs in 2014 symptoms started again. As above RF negative but anti CCP Positive so diagnosed sero positive RA.

Anti CCP can be positive for many years without symptoms but it's a fairly new test and is more specific to RA

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Check your vitamin D blood levels, vitamin D is the sunshine vitamin and can (sometimes) be linked to lower back pain and sciatica. Mine were.

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For about 2 years my vitamin D comes back low. I tried taking it daily but tend to forget. I think I need to try harder. 2000 IU is probably not enough I bet?

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vitamindcouncil.com for safe up to date doses of vitamin D3. You might have to have a search on the site a bit to find it.

I found the 1000iu my Doctor prescribed for my vitamin D deficiency was not enough, but a HU member suggested I might need a higher dose, I needed 5000iu D3, then thankfully over night all pains went away. If I forget to take my D3, the pains soon come back to remind me. :)

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Great to know! Thanks so much!

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Additional Vitamin D (Hormone) information, Twinboys 👬: 'Supplements/ Nutrients (B12, Vit. D, Potassium, Protein . . . ) for RAers/ Autoimmuners . . . ': healthunlocked.com/cure-art... 🙏 🍀 🌺 🌞

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I am in the U.S. in south central Kentucky!

I am sero-positive, and my disease is very aggressive so some things might be different for you!

The rheumatologist will check some blood tests like your esr and vitamin D. Some will add ccp and an additional rheumatoid factor to confirm that it is positive. Depending on the results you might get xrays of hands, knees, and back. Catalog your places and of intensity of your pain to tell them. Ask questions if you don't understand as it is quite complex, especially when starting RA meds.

Let us know how it goes, this is an amazing group full of advice and comfort!

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