Following months of repeated eye infections, I have now been diagnosed with dry eyes, and drops certainly seem to be helping. However I came across an article on Sjorgren syndrome,. The list of symptoms include dry mouth, IBS, dry eyes, dry skin, joint problems, all of which I suffer from. I also get bouts of trigeminal neuralgia. Now I am the first one to tell you not to match symptoms with what you read, but this made me wonder.
I will go and see my GP but anyone else out there got experience of Sjorgrens?
Thanks. 😊
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Pippapot
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hi, I have been tested for it with negative results. I had blood tests and scan of the glands in my neck. A rheumatologist is the best person to see, although it opened a can of worms for me, discovering that osteoarthritis was far more widespread than I thought and my gp thought.
The tests I had can’t rule it out 100% but my dry eyes and mouth have improved after coming off antihistamines, but it’s getting the balance right for my itchy skin from Polycythaemia.
I hope this helps you. I’m away for a few days with post op appointments following foot surgery. If you need more info, happy to answer questions when I get back. Take care, Aime.😺😻
I'm the one who posts often about Sjogren's. (Sjo) I replied to your prior post on your vaccine reaction.
With all those symptoms and trigeminal neuralgia (eye, cheek and jaw pain) odds of Sjo are high. I have a lot of info for you and resources, which I'll provide. You posted a year ago "More recently started getting pins and needles in fingers". This in hindsight is a Sjo warning. But alone not a worry. Did your symptoms change/increase after the adverse vaccine reaction?
Thanks for your reply. I definitely think that things have increased after my last vaccine. I have been invited for the spring booster, but won't be having it this time.I will be interested in any info that you may have. Thank you.
You are not on IFN so that can be ruled out. IFN has a black box warning for rarely causing autoimmune disease, of which Sjo is for some reason seems the one of most prevalence. (IFN is likely now contraindicated for you meaning your Drs will never prescribe it for you).
I replied to your prior post on the vax reaction. So some of this is redundant. Here is another post of mine more the point to your experience:
Your prior post I brings tears to my eyes..."Covid booster last Thursday, no problem. Flu vaccination yesterday, awful reaction. Fever and flu like symptoms overnight, expected. But the pain in my arm, extending down to fingers, pain in shoulder, pain in neck, and chest pain not expected. "
There are now two of us here with this similar history, Covid vax followed ~ 1 week later by a flu vax. The lack of official guidance on vaccine timing should be criminal. I now know two weeks minimum spacing is required for safety. This is not a secret but also not well practiced by clinics.
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Sjo affects 90% women. It's likely you were already with a mild case from your posts. The 1 week vax series kicked it up. Sjo can have many triggers, an infection, a vaccine, even an acute emotional stress event. But don't let anyone tell you it's your imagination. This has been a barrier to getting a Dx and respect, one that Cancer (ie MPN) has no trouble getting.
Another is Lymphocyte Enumeration and IgM. I had to request these and they were both abnormal.
The basic Sjo lab among these test is SS-a. But you can test negative and have Sjo, ~30-40% are neg. But then getting the Dx can be a pain.
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Resources:
These web sites are a best place to go
sjogrens.org
sjogrensadvocate.com
smartpatients.com This last one is a Sjo forum, like this one although I prefer using Healthunlocked format. I post as Sjoguy. I suggest you join. There are at least three other members there with MPN.
This image is a handout I made that may help you explain the basics to others. I marked areas that affect me. Sorry I can't make it larger, it's supposed to be a pdf. Other versions of this will be available soon and I will post to this thread.
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Treatments:
Sjo is a B-cell mediated disease like Lupus (SLE) and many others. There have been years of dud trials, not even something like phleb to help. But there are now 6 agents in or about to be in phase 3 trials, and a cell therapy that is potentially curative, but its trials are for "more serious" conditions they told me. So Sjo is likely to be treatable soon. In the meantime you need to have a rheumatologist on your team. And if that Dr gives no respect to your Sjo (too common) find another. Most Sjo pts have a long list of various Drs, neuro, pulm, GI...
A common therapy is plaquenil (HCQ). It's a mild immune suppressant. Some get Sjo relief with this, I'm intolerant. Another is LDN, you can read of these in the other forum. There are stronger drugs, (ie Rituxan) but with MPN and our drugs, these can be a problem. There are no FDA or equivalent approved therapies.
yes - I too have recently been diagnosed with Sjögrens - and I use a mouth spray and eye drops and gel for the night! I’ve had ET for 27 years and have recently been diagnosed with PV. So I’m lucky I guess?
My normal suggestion for members with any signs of Sjo while on IFN is to stop immediately and then discuss with your Drs. Sorry for the downer but this is a serious matter that you should discuss with your Drs, including a Rheumatologist. It seems your MPN Dr is not up to date on this threat.
You noted "I take Peg interferon and have a dry mouth and eye issues. I was told by my MPN specialist this was common. " I didn't reply there since it seemed a stand alone symptom. With your new dx of Sjo, your dryness has an entirely new implication. In this context this " common" effect is direly serious. It's possible your Dr does not take Sjo seriously which is a known big problem we Sjo pts are trying to fix. Read the details of my reply above for too much info on the subject that I learned via the worst way.
It seems your MPN Dr has not discussed and/or is not aware of the severe implications for Sjo pts using IFN. See the "neglected" section of the handout I posted above.
In the Euro PEG label IFN is contraindicated with this note "Patients with signs or symptoms compatible with autoimmune disorders should be evaluated carefully, and the benefit-risk of continued interferon therapy should be re-assessed". The reassessment is warranted in light of your new Dx. IFN can by itself, or in combination with other factors, trigger Sjo as it may have done for you and has for others here. Sjo for some reason seems to be the autoimmune most associated with IFN. (excluding thyroid).
Hi Pippapot…I have Sjogren’s. I was diagnosed with it many years ago. I was told that Sjogren’s made me more susceptible to my positive Jak2. I was recently diagnosed with ET.
A lot of doctors don’t know anything or much about Sjogren’s and there’s a lot of misinformation out there about it.
There’s another support group that I participate in called “Smart Patients” that is a wealth of information just like this one.
I presume you will get an antinuclear antibody test to diagnose this. A positive response to the SS-A antibody and negative on all the others in the ANA panel is consistent with Sjögren’s Syndrome, especially when combined with the symptoms you indicate. Good luck!
SS-a positive is a clear help in getting Sjo Dx. Unfortunately 30-40% of Sjo pts are SS-a neg. Sort of like triple neg ET but much more common. Many Sjo pts are ANA+, and RH+ is also common. These pts often endure years getting the correct Dx even as their Sjo is very real and debilitating. See my post above on the immune tests I got and requested.
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