PMR and Sjogren's Syndrome
Posted , 15 users are following.
I was recently told that its extremely rare for a person to have both Sjogren's syndrome and PMR at the same time. Can anyone confirm this as true or false?
1 like, 28 replies
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Notes on PMR and Sjogren's Syndrome
mary19068 amkoffee
Posted
I developed Sj. Syndrome while taking preds. They can cause very dry eyes and mouth. I was given artificial tear drops and an artificial saliver spray for my very dry mouth. ...
Anhaga amkoffee
Posted
Maybe because Sjogren's is kind of rare to begin with?
https://www.ncbi.nlm.nih.gov/pubmed/15988601
EileenH amkoffee
Posted
I probably do - but as Anhaga says, it is pretty rare on its own, it will be even more rare to have both. But that doesn't mean it doesn't happen so really it is a bit of a silly statement.
However - a patient with Sjogren's seems to have a higher risk of PMR than someone in the general population:
Polymyalgia rheumatica in primary Sjögren's syndrome. by Szodoray P1, Jonsson R, Brun JG, Zeher M.
Abstract
The aim of the study was to describe the clinical and laboratory aspects of primary Sjögren's syndrome (pSS) associated with polymyalgia rheumatica (PMR). The retrospective study compares the clinical and laboratory aspects of patients with pSS associated with PMR on a relatively large cohort of patients (n=16) and pSS patients without PMR (n=531). The prevalence of PMR among pSS patients was 3%, while in the average population, the prevalence of PMR is only 0.75%. PMR developed 8.7 years after the diagnosis of pSS in the older female pSS population (over 50 years of age), and in those with only glandular features. Interestingly the pSS/PMR patients had hypo gammaglobuline levels, while in the pSS patient group hypergammaglobulinaemia presented. Furthermore, positive ANA serology was more frequent among pSS/PMR patients. Since the clinical management of pSS/PMR is different from pSS, a better understanding of this clinical entity is essential.
amkoffee EileenH
Posted
Wow Eileen that last paragraph read like an instruction manual. It is definitely above my level of understanding.
I have had SS for many years but did not know it. I knew I was always thirsty and carried a cup of water with me wherever I go. And my eyes have also been dry for years and I told my eye doctor but he didn't tell me anything about SS. It was someone in one of my pain groups that told me what I had. And then I put off testing because I didn't see the need for a diagnosis since I was already being treated for both. But a few months ago I decided to have the lip biopsy done.
EileenH amkoffee
Posted
"The prevalence of PMR among pSS patients was 3%, while in the average population, the prevalence of PMR is only 0.75%. "
is all you really need to understand: 3% of patients with primary SS have PMR, in the general population 0.75% have PMR. SS patients develop PMR 4 times more commonly than the rest of the population.
darlene36688 amkoffee
Posted
margaret91439 darlene36688
Posted
I've had Sjogren's for over 20 years, but managed to get dosage down from 40 mgs to 6mgs, with occasional booster doses when something goes wrong - either stress (like when my husband was dying) or when another medical problem interferes. I really feel for you with the head pain, as right now I've got all the symptoms of polymyalgia and the head and neck pains are quite something - very painful and continuous, so sleep is almost impossible! Painkillers don't seem to work - whether gels or tablets, so I've been considering raising my steroid (prednisolone) meds. for a couple of weeks to see if this would help. Has anyone else tried this? and what might be the optimum increased dosage?
EileenH margaret91439
Posted
darlene36688 margaret91439
Posted
I was diagnosed with Sjogrens appx. 5 years ago.
Then along came GCA and PMR.
The prednisone was a blessing even though I really didn't like the weight gain & moon face. I've been getting the actemra infusion once a month for the last 6 months. My inflimation is at zero right now due to the infusion. This is helping to reduce my prednisone. Currently, I'm on 10mg. & next week I think my rheumatologist is going to reduce it to 7.5 mg.
I waited 5 months for an appt. with a neurologist who is top's in that field.
The first appt. with her, she knew exactly what was wrong & how to treat it So here's another notch in my belt. It's called "occipital neuralgia"
I have been getting nerve blocks in the occipital nerve for appx. 3 month's & they have been a true blessing. I get very few headaches & I would get headaches so bad I could cry. Still seem to get some of the soreness & tenderness on my scalp.
Typically I should get injections once a week but we live 2 hours from this doctor so I've been getting them every 2 weeks. I have had to call her & go in sooner than the 2-week timeframe . & that was o.k. with her. My last appt. she said we will try every 3 weeks. I am like a new person. I had headaches for 9 months.
My neurologist said GCA and" occipital" neuralgia are closely related.
Anhaga darlene36688
Posted
I find that puzzling. I didn't think GCA was a neuralgia. But certainly I suppose the pain could be similar.
EileenH Anhaga
Posted
GCA is predisposed to affecting the occipital area - even if ignorant doctors think it is the "wrong sort of headache"! - and one cause of occipital neuralgia is blood vessel inflammation...
https://www.healthline.com/health/occipital-neuralgia#causes
darlene36688 amkoffee
Posted
I'll try this again.
I was diagnosed with Sjogrens Syndrom appx. 3 years ago.
I had and have all the symptoms of Sjogrens.
On July 30, 2017, I was diagnosed with GCA and PMR.
When the Sjogrens & GCA, PMR all act up at the same time life can get very difficult.
Right now the GCA is kicking my butt. The head pain can be a bit much to deal with.
Just sent my rheumatologist a note hoping he will raise my prednisone.I'm currently on 25 mg. I really hate being on prednisone but I have to do what helps.
When you have more than one autoimmune disease and they flare up at the same time llfe can be challenging.
Right now the fatigue is overwhelming for me.
Porgi amkoffee
Posted
I have PMR and am having a salivary gland biopsy in march because Sjogrens can be a secondary condition to other autoimmune conditions and i have all the symptoms, dry eyes, dry mouth, dry skin. My rheumatologist has arranged it. A lot of people who have sjogrens also have such conditions as fibromyalgia, rheumatoid arthritis, lupus or PMR. But sjogrens can also be the primary condition and other conditions be secondary to it. You can get more information from a Facebook page for sjogrens sufferers but it's closed membership so if you want more information you'll have to state your reason for joining.
darlene36688 Porgi
Posted
Will check out the Facebook page.
I'll be very interested in the results of your salivary gland biopsy.
I'll see how you make out & I might mention it o my rheumatologist.
Best of luck to you.
Porgi darlene36688
Posted
Apparently it's the only sure way of diagnosing sjogrens. Blood tests don't always indicate it. I didn't know but viscosity tests, which I thought was just a more accurate way of diagnosing a flare in PMR can be used to diagnose sjogrens but they're not certain to show it. A bit like the tests for PMR inflammation inaccurate and not a sure way to diagnose. I wasn't keen on having the biopsy but rheumi says we need to be sure
darlene36688 Porgi
Posted
What you say makes sense.
amkoffee Porgi
Posted