Diagnosing PMR, GCA and infammatory arthritid - PMRGCAuk

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Diagnosing PMR, GCA and infammatory arthritid

arvine profile image
9 Replies

I may have asked part of this question before, but need clarification if possible. I see many on this forum commenting on GCA for instance having symptons from headaches to back problems and joints hurting ie hands, feet, knees etc, and a lot if these symptons seem indicative of arthritis for instance, My understanding when originally diagnosed with PMR in Oct 2016, with severe stiffness in shoulders and arms, ( couldnt lift arms to brush hair even without severe pain, ) was PMR affects muscles , tendons etc, so diagnosis based on those symptons, is there somewhere to get clarification on how these diseases are diagnosed , each one having similar symptons

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arvine profile image
arvine
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piglette profile image
piglette

It is not that easy to diagnose either PMR or GCA. They reckon 40% of diagnoses of PMR are incorrect, it could by vitamin D deficiency, cancer, fibromyalgia and a load more. It is often a matter of discounting everything else!! It also seems in a lot of cases the medical profession are not that good at diagnosing either PMR or GCA, as there is no scientific test as such that says what it is.

arvine profile image
arvine in reply topiglette

Thank you, I have wondered and been on 2 rounds of pred over 8 yrs, and realy feel pred has caused so many more problems and side affects for me over last couple of yrs, down to 4 mgs now but reluctant to keep tapering as am having so many other issues goibg on, labral tears, gluteus tear, subchondral fracture in hip, dexascan showed high risk for fracture, and more, had several MRI s and scans over last year, have rheumy, not confident in, seeing ortho dr sep 11 th

piglette profile image
piglette in reply toarvine

I often wonder what would have happened if I had not had to take pred and if I would be in a better state.

Grammy80 profile image
Grammy80 in reply topiglette

Hi, Since I have GCA, which went undiagnosed for almost a year....I know what would have happened to me without prednisone....my view would be very dark. Even though after five years on Pred and Actemra and now back to 60mg a day because of a flare....I consider prednisone my friend. Given a choice between the side effects and further vision loss....I'll take the side effects....I think we all would.💞

piglette profile image
piglette in reply toGrammy80

I really meant if I had not had PMR or steroids.

Grammy80 profile image
Grammy80 in reply topiglette

💞

Grammy80 profile image
Grammy80

We are all so unique and these are not diseases Doctors are on the look-out for and quickly diagnose. The UK, is ahead of the States in their dx and fast tracking! I was never dx with PMR and at 78 started with headaches, tender head and eyes, jaw pain, sensitive teeth, numbness around face and ultimately jaw claudication.....still no Doctor said GCA until I'd suffered some vision loss. My blood levels were extremely high, ESR and CRP, but the symptoms are what count.

We aren't that easy to sort out~~💞

AtopicGuy profile image
AtopicGuy

There are about twenty recognised forms of vasculitis. These are diseases caused by the immune system mistakenly attacking the walls of blood vessels, making them inflamed (swollen), and restricting blood flow. Which form is diagnosed depends on the symptoms and the location of the inflammation (if it can be found), plus any test results that may offer clues.

GCA is centred on the temporal arteries and those serving the optic nerve(s) and retina(s). However, the symptoms may extend to the brain, jaw, scalp and beyond, suggesting the inflammation of the arteries is more widespread. That's why GCA is classed as a form of large vessel vasculitis: autoinflammation of the aorta and/or other large vessels that branch outwards from the heart, towards the head, internal organs and limbs. The inflammation is usually severe enough to show up in biopsies and/or scans, which makes GCA well understood.

About 50% of GCA patients also suffer severe, bilateral pain and stiffness in the shoulders, buttocks, thighs (often described as around the hips) and beyond. The symptoms emanate from the muscles, not the joints, so the name polymyalgia rheumatica (autoinflammatory pain in many muscles) was coined to distinguish this disease from arthritis. The cause of PMR is assumed to be an extension of the vasculitis causing the GCA, though it is usually too mild or thinly-spread to locate; it responds to the same immunosuppressive therapies (especially corticosteroids) as GCA, albeit at lower doses, as would be expected. Many patients develop PMR first, and about 15% of these go on to develop GCA too; much more than the general population.

The average age of PMR/GCA patients is about 72, so it is no surprise that signs of arthritis (disease of the joints) are often found among sufferers, whether previously diagnosed or not. Osteoarthritis is wear & tear of the joints (which can become inflamed like any injury), while rheumatoid arthritis is another autoinflammatory disorder. The immune system is incredibly complex, so it can malfunction in many ways. People with one autoimmune disorder are at increased risk of developing another. Overlap between conditions is inevitable, and patients often have unrelated cardio-vascular, diabetic and other conditions at the same time.

There is no specific test for PMR and the inflammation causing it is rarely located. That means it cannot be confidently diagnosed unless all other conditions that can cause a similar pattern of muscle pain are ruled out first. This includes injuries, arthritis, and infections due a virus, bacterium, fungus or parasite. There are also some autoimmune neurological (brain, spinal cord or nerve) disorders that can mimic the symptoms and respond to steroids. Diagnosing PMR is anything but easy!

arvine profile image
arvine in reply toAtopicGuy

Oh thank you, you have provided the most detailed explanation I have seen to date, appreciate , and can now understand the similarities and differences between all of these diseases, and in many cases see why diagnosing is a challenge, thanks so much

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