I am in a quandary, so need some input. I have been on Pegasys for 11 months. I am taking 67 mcg weekly. Six months ago I started having symptoms of parotid gland swelling. I have had 2 episodes. Then at the end of March I had an episode of peri orbital swelling with fever. I have been overwhelmed with fatigue and joint pain. I mentioned to my Hem/Onc local physician that I was thinking that interferon may not be my friend. I just saw him, virtually, this past Friday. He has referred me to a rheumatologist but said to continue with the Peg. I also have an appointment for a phlebotomy because my HCT is up to 43.9 and I do feel it with more skin flushing and sweating.
I have felt particularly bad this week. I had to call in to work on Monday. I slept all day until 3pm. Then was ready for more sleep at 7. The pain in my knees, ankle, feet, elbows and hands has been awful.
That all said, I am hesitant to take my Peg this week. I have read multiple medical journals on interferon bringing on Sjögrens in people who are predisposed to it. I’m sure you have seen the posts by EPGuy who has had Sjögren confirmed. I want to skip the Peg this week. I did luck out and get a rheumatology appointment for May 30.
If it were you, would you skip your Peg?
Thanks!
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Wewo01
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Sorry to hear about the parotid gland swelling and concern about possible Sjögren Syndrome. I probably would not skip the PEG dose, but might consider a lower dose. It is not an all or nothing decision. Ultimately, it is what you feel most comfortable with. Your body - your choice.
Please do let us know what you learn and how you get on.
DO NOT TAKE THAT LAST DOSE. I am living to regret it. I was on 140 of Bes and took a reduced at 100 figuring it would split the risk. Regulars here know my story. While my troubles started with the flu vax, the real trouble started a couple months later and is frighteningly similar to your experience. Suddenly feeling on the outs I took that last dose anyway, not wanting to stir up Dr's orders.
-Your symptoms are more advanced than I was at that time so the red flag is way out. Plus being female is 90% of Sjo cases. I'm in the unlucky 10% of males. You have systemic Sjo, as do I. This is the sort that causes what you're experiencing, while mine remains more the classic dry mouth. And we're at increased risk for lymphoma depending on a certain list of symptoms.
I replay two fateful events daily. Getting the flu vax and taking that last IFN dose. Absent that last dose I might have recovered. I now can add taking high test glutathione, it finished the job.
I have a set of studies on IFN/immune trouble and the key point is stop IFN ASAP when this sort of trouble starts. Seems far away from our reality since none of the PEG/ Bes studies found this result. But the black box on IFN is there for a reason. This from the PEG label: "In many, but not all cases, these disorders resolve after stopping PEGASYS therapy"
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IFN is actually an accelerant of autoimmune conditions. This title is on the point:
"Type I interferon (the sort we take) –mediated autoimmune diseases: pathogenesis, diagnosis and targeted therapy"
This is IFN that occurs naturally in the body, and auto immune therapies are being studied specifically to reduce IFN levels. So it seems a really bad idea to keep adding more IFN to the fire.
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My MPN was not fun, malaise etc. I say was because the fresh new disease is way more unpleasant for me and you really don't want it. Also unlike MPNs there are no useful treatments for Sjo. There are a lot of promising phase two studies.
One good thing about IFN is you should have at least a few weeks (3 months in my case after 11 months on IFN) before bloods start rising. So there should be some time to consider your options.
With all that, quitting the IFN was a very wise move in my opinion.
For Sjogren's dry mouth, if it's bad enough, there are two meds that are indicated, pilocarpine or cevilamine. Mine got way worse in just the past week's time and may be past where these can work.
There is some research on electrical stimulation for dry mouth. I will try to put my inventor profession to work on this.
You'll need close check ups with dentists along with the eye Dr if dry mouth is bad enough.
I'd think about cutting the weekly dose in half to 30 mcg for one month. And quit the drug entirely before a month was up if symptoms continued to worsen.
I'd try to make a video visit with the interferon experts (e.g. Dr. Gaith Abu-Zeniah) at the Silver MPN Center at Weill-Cornell College in NYC to see what they would advise as they've had decades of experience treating hundreds of patients with interferon including some for 30-45 years and still counting.
Morning I have sjogrens too after being on 90mcg of peg for a year and a half I also get the same swelling as well as my left inner ankle and left hand and arm I was lucky enough to see an mpn specialist who stopped the peg with immediate effect. The peg also brought on ulcerative colitis so all in all not a good experience. I now have blood tests every 3 weeks and an aspirin each day I am considered high risk due to BP and i know at some point I will have to have stronger medication for my bloods but will cross that bridge when I come to it. I'm just glad I'm off the peg x
Sorry to know you're in the club. Ulcerative colitis also an autoimmune. I suspect there are more with these troubles but not making the connection as we have.
With IFN if one gets thru the first two years it's usually ok afterward.
Hoping Rux gets approved in UK, you're well qualified for it.
Interesting your Sjo symptoms improved after quitting. Seems you stopped in time. Maybe I can eventually get less of it.
For dry eyes, there is a version of omega 3 supplement capsule designed for that. "Theratears". I am switching to this one, maybe it can help dry mouth too. It is supported by some studies and has great reviews. This may help anyone with dry eyes, not just Sjo pts. But no way to know what actually will work for each of us.
On Facebook there is an MPN interferon forum with 4,700 members. I searched the forum for posts about Sjogrens and found some including this one about how to diagnose it:
"Cleveland Clinic told me then that there are five criteria that must be met to have an official diagnosis of Sjogrens. These include positive ANA, positive SSB (or SSA I believe), positive Shirmer's test for dry eye by an ophthalmologist, a lip biopsy, and you have to be symptomatic."
I didn't find any posts where patients discontinued Pegasys because of a diagnosis of Sjogrens. In one case a patient got complete relief from 3 auto immune disorders, including Sjogrens, by taking hydroxycloroquin tablets along with their weekly dose of Pegasys. In another case a patient with Sjogrens got a prescription for Restasis eye drops.
I'm just starting to learn about Sjo. I hope to integrate info as I do for MPN. One item I know is all the rheum markers can be negative and one can still have Sjo. It's a maddeningly varied condition, more so than most other autoimmune, it's also widely under-Dx'd and has been largely ignored till recently. Fatigue is among its worst parts.
The Sjo forums on this service are sparse and not great for learning from or to.
It's likely few IFN users with autoimmune are connecting IFN to their auto immune condition. It's rare on top of rare so there are only a few case studies.
The two specific Sjo markers are SS-a and SS-b. SS-a is more often positive than SS-b. I have SS-a but all others are neg. I failed the Schermer's test. This has a paper strip that gets whetted by the eye lid area. But my eyes still are ok.
Once I got dry mouth Dr gave me the formal Dx of Sjo, lip biopsy not required. I have a rare fast onset version, I assume juiced by the flu vax.
You're right about hydroxycloroquin (the infamous one from Covid) It is a common Sjo therapy but of min help for dry mouth. But it is not curative.
Sjo is often mild, but Wewo of the top post and I have the not-mild types. This is where quitting IFN is an esp good idea.
gosh what a conundrum. Maybe be delay a few days and see if things ease then maybe lower the dose but I think you ultimately need to speak to your specialist nurse.
I agree with your decision to stop the interferon. particularly as you have a phlebotomy scheduled, and an imminent rheumatology appointment. I’m presuming the rheumatologist will liaise with your haematologist to discuss your case.
Maybe Ruxolitinib may suit you better.
I really feel for you, as I remember your cardiac issues and how you fought so hard to get Pegasys. This must be so disappointing for you.
If you do decide to go with other therapies, Rux might provide double duty for us. Jak inhibitors are the latest thing in autoimmune field. Most pts however can't use the Rux version since it would lower their bloods too much. But for us it so happens we can try it "off label" for these conditions while using it on-label for MPN.
"We provide proof of concept supporting further study of ruxolitinib to treat SjD. "
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An actual trial:
"This trial will be the first step to assess if Ruxolitinib can effectively treat AA (autoimmune hair loss) in patients with APS Type 1/APECED and several other organ-specific autoimmune manifestations (e.g., gastritis, enteropathy, Sjogren’s syndrome and candidiasis) in affected patients. "
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