Two months ago I started injecting 45mcg of Pegasys weekly. During this time I have developed dry mouth which is most pronounced in the morning. I drink what I think is a lot of water, and even during the night I awaken several times to drink water. So the issue doesn't seem to be very affected by increased hydration. At times I've also had itchy eyes - I think from dryness, but I also had instances of watery eyes. And I've also developed an occasional cough. I didn't see mention of dry mouth as a side effect on the Peg leaflet, however, on the pharmacy literature which accompanied Peg it did mention dry mouth. The Pharmacist stated that dry mouth is uncommon - about 4% occurrence. But she stated that cough is more common at 15%. The leaflet states that Peg can cause new or worsening autoimmune disorders, and gives examples of disorders - but doesn't mention Sjogrens. I've seen others on this forum mention acquiring Sjogrens, and yesterday I talked to a woman in my MPN Support Group that developed Sjogrens while on Pegasys. She stopped taking Peg but now has permanent Sjogrens. Is it possible to have these symptoms without developing Sjogren's? In other words, can dry mouth be present while on Peg without autoimmune damage to salivary glands? Or does having these side effects justify stopping Peg - at least to see if the issue resolves. Thanks for your thoughts.
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I am the top one on this forum you refer. If you dig deep in the trial data, Sjo is prominent among the rare autoimmune (A-I) outcomes. My opinion and advice is:
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**STOP THE IFN IMMEDIATELY and then after you stop, schedule an urgent visit with your Dr and preferably also a rheumatologist.
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See my post "Last Dose" to understand why the urgency. I believe my posts have helped others here avoid the permanent version of this horrific outcome.
Also see my post on the A-I tests I got.
While my fateful sequence required a botched vaccine this is not a prerequisite for a descent into Sjo on IFN. I see you are a guy in your profile. We tend to suffer worse Sjo than women. (90% of Sjo is female)
To your question " In other words, can dry mouth be present while on Peg without autoimmune damage to salivary glands?" Yes, there are innocent reasons for new dryness, many meds cause it. But the evil reason is a real option esp with the timing and severity. This is why IFN is the only MPN treatment with an FDA black box warning.
Sjo can and does hit very suddenly, on the Sjo forum hearing of an overnight bust is regular.
Re gland damage, in early disease there is not much damage, just dryness. This damage occurs slowly as Sjo progresses. Watery eye are a classic Sjo dryness effect, is a sign of irritation from imbalance in the tear composition.
You note "but doesn't mention Sjogrens"--Importantly, Sjo is way more than dryness, while dryness alone can cause debilitating damage to eyes and mouth. It's a whole body wreckage for many pts that offers features of many better known A-I's in a soft sounding name. Lungs, neuro joints and esp chronic fatigue ....But it is a phantom disease among many rheums and Drs in general.
You don't note any neuro complications, that is a good sign. Also, cough is not a typical Sjo effect, except sometime a response to throat dryness.
Sorry for the alarm, but your bells are ringing. Good news is in a worst case, there are finally treatments in phase 3 trials so it's likely to be treatable after years of nothing.
I plan to post more on tests of interest for A-I risk.
Thanks EPguy - your posts were helpful. I've had these symptoms for at least a month of the two months I've been on Peg. I notified my treatment team today of my concern and I'm awaiting a response. I won't be taking my next dose, which should be on Wednesday. I'll be 59 soon and low risk for thrombosis. I'm taking Peg now because I was hoping that earlier intervention would mean getting ahead on potentially reducing allele burden. I was so hopeful and optimistic that Peg would work for me. I still hope that something can be worked out, but I think a pause is what I'm most comfortable with now.
Thanks. I'll ask my treatment team about being evaluated by a Rheumatologist too. It seems difficult to diagnose though. I'm really hoping I don't actually have Sjogrens - that the symptoms will go away.
It's one downside of the long lasting Pegged IFNs; the durability of the dose that makes it work so well is a problem when it needs to be flushed. Bes has this plus/minus feature to a larger extent.
Sjo Dx historically takes years for most. But if my experience is a guide, the IFN version is easier to Dx. For rheum tests, ss-a is a priority, mine went up quickly after it got started but one can have all sero-neg Sjo too.
Some additional tests your Rheum should get is LYMPHOCYTE ENUMERATION and EBV activity. (a bad case of Mono in one's 20's is an A-I correlate) The first one is typically done for AIDS pts, but I requested it as I suspected and confirmed it's very relevant to A-I's in an opposite way. The 2nd one I've not even got yet. This is part of a deep dive I'm doing to connect info that has not been well connected. I'm preparing a post on the Sjo forum and will do here too, but it's a brain twist.
Thanks for sharing your experience. I'm grateful for forums like this. I also have dry nose and throat. It just seems like it would be difficult to tell if the dryness is more benign - or is it due to developing an autoimmune response like Sjogrens. I think I just need to stop for now until I get better assurance of what's going on. I'm going to consult with my treatment team.
I get a slight dry throat 24 hrs after injection but always goes. Worth asking if you can try 45 monthly instead of weekly which they did with me & any symptoms went . No eye problems from it.
Thanks for sharing. Your perspective is helpful. I also have dry nose and throat which contributes to dry mouth due to mouth breathing while sleeping. It is consistent between weekly doses. I'll consult with my treatment team.
Hello. I'm only replying to the dehydration aspect of your side effects. I see you're getting solid responses to some very challenging issues.When I started Peg, I thought I was already drinking more than enough water, but I increased it anyway, and it helped with all the dehydration-related symptoms. Much later, I found a recommendation somewhere for MPN patients to drink 4 litres a day.
Somewhere else I found a suggestion that a pinch of quality sea salt in each glass of water would enable you to drink more without over-diluting your fluids.
I settled down to a dose of 45 every 2 weeks and my platelets soon dropped enough for me to get my hip replacement a year later.
I stopped all meds over a year ago but in recent months I have been waking with sticky/crusty eyes. That reminds me to increase the lightly salted water.
Thank you - I guess the hard part is knowing whether the drying is benign or Sjogrens. Interferons have been in use for MPN for 30 years or more. It just seems like there would be better guidance or evaluations in place to determine if the dryness is benign or the result of damage caused by an autoimmune response.
You should stop the interferon now, at least until you get evaluated by rheumatology.
My Drs were not MPN specialists. They didn't even know that the interferons are contraindicated for people with autoimmune issues or that they could bring autoimmune issues to the surface.
Like EPguy, I also developed a bunch of auto immune issues after starting Pegasys, with symptoms involving dry eyes, Raynauds and others. I could not convince my Drs that it was related to the Peg but when I finally stopped taking it the dry eyes went away. Other side effects did not go away.
I also had bad immune responses to vax jabs while on Peg including, developing sarcoidosis. Sjogrens and sarcoidosis are both know to cause bone marrow fibrosis on their own. I went from having grade 1 fibrosis to grade 3 in less than two years due to this and am now looking at a stem cell transplant. Trying to get the Drs to see that the fibrosis was caused by the autoimmune issues when I already had ET was impossible. They don't want to know. They don't want to acknowledge they didn't know what hey were doing.
Act now and don't be fobbed off by Drs who look at rare events as rare rather than as events.
Thanks for sharing. Your perspective is helpful. I don't plan on taking tomorrows dose. I'll discuss with my treatment team. It's seems like specialists who prescribe interferon regularly should have enough patient history to make a differential diagnosis. This can't be new as interferons have been in use for a long time.
Regarding long time IFN use, its main use historically was for Hep C. It was a high dose but for a limited time. It's now largely obsolete there and the Hep C data stop ~10 years ago. Long term "forever" IFN use and study is really us, and only the last few years is it used widely for MPN. So we and our Drs are learning right now in what can be called a phase 4 study. Sjo is popping up but A-I's are still infrequent enough to keep patterns invisible.
That's interesting. I knew it was a previous treatment for Hep C, but I was under the impression it might still be used for Hep B- at least that's an indication on the leaflet in addition to Hep C. The Peg manufacturer could conduct clinical trials to compete with Besremi as an approved drug for PV, and eventually ET. Clinical trials are expensive but they could be the preferred drug on formularies because of the cost savings of Peg vs Besremi, unless there are significant differences for efficacy and safety.
Good point on Hep B. But there seem to be many other Tx for it, maybe that is why IFN was more prominent in Hep C. It was combined with another drug and was fairly effective, till the new cures came around.
This must be in other threads but I'm not familiar with this particular report. A quick read PEG wasn't signif better than HU. But it goes to 2 years only, IFN needs at least three to strut its stuff. Note the VAF result vs HU was not so good, but at 2 years this is not a surprise.
If this was their best ph 3 study, it's possible they didn't try for approval. So it remains off label and cheaper. I suspect they might raise the price if it had FDA for MPN. We all know it works well anyway.
Problem on the A-I's is no studies are large enough to capture actionable data. It's up to us. My impression is among the rare A-I's IFN has affinity to Sjo for some reason. Thyroid is a separate A-I category, more common but more treatable.
I was on Pegasus and developed Sjogrens symptoms. Once a month I was getting swollen parotid glands, peri orbital swelling, dry eyes, dry mouth. That happened 3 consecutive months and I posted to this forum. EPGuy was very helpful as were others in letting me know about the autoimmune effects that can occur with Peg. I immediately stopped my injections. Within a couple of months, I started Jakafi and most of my autoimmune symptoms went away. I was diagnosed by a rheumatologist with Sicca but not Sjogrens . I have had no more parotid gland or orbital problems, since stopping the Peg. Good luck on your journey and maybe consider a change to Jakafi.
Thank you. It's reassuring to know that it might just be sicca not Sjogrens. I'm glad you had a good outcome. Do you think Jakafi contributed to resolution of symptoms or was it just that you stopped Peg? - I imagine it was just from stopping Peg. If Peg doesn't work out for me then I'm going to wait a year when I turn 60 to initiate medication. I'm hoping Bomedemstat will be available as an option, at least in clinical trial.
Interesting on the terminology. Until recently Sicca syndrome and Sjogren Syndrome were often used interchangeably. In more recent years the systemic nature of Sjo is better known while sicca is a subset of Sjo. Some Sjo pts have only sicca, but that is not common.
Is your sicca stable? Good news the other Sjo things are resolved.
Hi EPguy! I have been stable, thankfully. The rheumatologist I saw did say I had Sicca but not Sjogrens. Even though I had the parotid swellings and the orbital swelling. She told be there were other things that cause those symptoms but she never offered any explanations. She was quite abrupt.
I was going to seek out another Rheumatologist but I decided to wait to see if my symptoms settled. So far, they have.
Rhuem is a box of mysteries, and Sjo is more mystery on top of that. Most Rheums know little about it. It can go into remission, this may be your pleasant condition.
It might be good to find a qualified Rheum when you don't need one, for the possibility that you might in the future. At least in my med org getting a 1st appt can be months while follow ups are easier.
That is a very good point! I did look one up that I saw a few years ago. He was the first doctor to talk me that I needed to see a hematologist. I will follow up with him but I have been distracted by shortness of breath and tachycardia. Having testing done for my cardiologist. I had a pulmonary function test a few weeks ago. The pulmonologist said I scored in the 125 percentile of all of his patients. And told me that you would never know that I was a smoker. The tachycardia is adversely affecting my life. I still have a tilt table test and sleep study coming up. And it may all lead back to Sjogrens. 🤷🏻♀️
Those are all classic Sjo stuff. (but can be other diseases too of course) I got SOB out of nowhere, it's just Sjo. More excuse to get that friendly Rhuem on your side.
Agree on the POTS, that would fairly seal the deal on the Dx. I tested ok last year but do have mild COPD, not normal in a non-smoker except that Sjo offers this feature to all.
I am on 135mg Peg weekly and do have a dry mouth but usually just during the night (I inject about 8 pm) and then it seems to be fine. I did experience bad itching when I started but over the last couple of weeks the itching seems to have almost gone away. I am just extremely tired and everything is a struggle - particularly mentally. I have very little motivation these days. (I have had chronic fatigue (due to sarcoid) for years and have been able to manage it but this is just adding to it right now).
What I am struggling with is a really bad back. Every single muscle (it seems) across my shoulders, collar bones, down my spine are very sore and tender. I have had this before but it usually goes away but it has been lingering for about a month now. Any exertion starts off pins and needles.
I already have pulmonary sarcoidosis (which is an autoimmune) and did raise my concerns with both my sarcoidosis specialist and haematologist and to be honest neither seemed overly concerned. I have had sarcoidosis for 19 years now but it seems to be quiet at the moment but I do cough in the morning. That has been a normal occurrence for many years - it stops when I cough up pea sized mucous (sorry if that was too much info). I had a Pet CT Scan 2 years ago and there was no new activity however I do have calcification in my lungs due to historic activity. I always believe it is my sarcoidosis becoming active again but I have also consider that it could be hayfever (I've never had hayfever until a couple of years ago) but do feel a bit more congested this time of the year.
I’m on same dose of peg. Have been for almost 5 years (dose was higher at start). It’s done wonders to my blood numbers & Guys seem very pleased with my overall trend.
I get dry eyes & dry mouth (both much much worse at night)
To avoid dry mouth I sleep with a nasal strip - it works for me.
In the morning I use eye wipes and then eye drops & that alleviates that.
That's very helpful. I just wish there was more guidance to help determine if the dryness is benign or associated with a developing autoimmune disorder. If I knew it was benign I would treat the dryness with over the counter products as you do, and then move on. I know side effects can occur and often do, with a lot of medications. I can easily accept benign physical side effects, but I'm very cautious about ensuring further harm doesn't occur. Especially because I'm technically still low risk for thrombosis.
A-I usually doesn't present abnormalities that routine MPN care would uncover.
I think MPN experts that are sensitive to A-I risk are rare, as are A-I disasters. Dr Gotlib at Stanford seems connected to this issue. But one reason for this problem is the lack of risk info to work with in these early days of wide long term use. Most pts do get warnings but these are varied and not yet predictive enough. My particular event doesn't match any prior case study.
Yours seems benign, especially after 5 yrs. I'd say no reason to worry. Have you had the dryness for the entire time you've been on Peg? Or did it present later on? I feel better about things at this point. I do feel mine is benign and that I will be resuming Peg after consulting with my treatment team. I'm grateful for my treatment team, but I think what is often missing is more timely feedback from treatment teams about side effects patients might be experiencing. Have they seen this before in other patients? Were there any instances where initial dryness turned out to be Sjogrens? If so, was it associated with a particular duration/dosage? If not, can one expect to experience benign dryness all the time, or is it typically time limited and resolves. It seems like it is common for patients to have to go elsewhere to get information - the internet/forums like this, when our providers have a history of treating patients with similar issues.
Thanks for sharing, it's most helpful because it appears that I'm following the same path. There are others in this forum who also have dry eyes and mouth or throat and attribute it to Peg. It's interesting however, that the Peg leaflet indicates that the incidence of dry mouth during clinical trial was 4% of Hep C patients taking 180mcg. I'm only taking 25% of that amount, and only for seven (7) weeks. So at a low dose and short duration, it might be expected that the incidence would be less than 4%. Maybe dryness is more prevalent at lower doses.
UPDATE: I had my appointment with my care team. Two blood tests for Sjogrens were negative/normal. All of the other normal blood work looked good too. We decided to move injections to every 2 weeks and the dryness has lessened. I'd like to get back to weekly injections, so after a few weeks I'll likely propose that change. I want to achieve platelet count normalization sooner, and if dryness increases it can be managed with over the counter products. My concern was not as much about the dryness, but rather what was causing it. Thanks for everyone's input.
Which blood tests did you get for Sjo? The standard one is SS-a, SS-b. These are reliable for knowing a positive result. But 30-40% of Sjo pts are sero negative, so it's not a determinate test when negative. If ANA is also neg that helps. But Sjo can present with all common A-I tests negative. It can be a difficult Dx to get even with symptoms present.
Most encouraging is the reversal of the symptom with dose reduction, so what ever the cause it's currently reversible.
ENA and ANA were the tests. I understood that they aren't necessarily conclusive. My take on it is that antibodies can take a while to show up in blood tests too. I agree that lessening of symptoms after extending dosing was positive. I'm losing weight while on Pegasys, so I'll be watching that and trying to increase calories. But I feel like it's due to decreased appetite, so I'm going to continue to eat when not hungry and eat more frequently during the day.
Agree on the delay in antibodies. My SS-A went from marginal shortly after my Last Dose to very positive over a couple months. Generally they don't retest these but I insisted as I felt it was changing.
Appetite is not directly a Sjo worry except when dryness has progressed to a certain point, not your issue. I relate to undesired weight loss, eating had no effect. Rux fixed it in my case, but it was ok for much of my Bes period.
Glad you self advocated and got retested. The weight loss due to interferon is potentially concerning to me, as well as your experience that eating didn't counteract it. I have time to cook and eat throughout the day, so I'm going to give it a shot. I had been on a fairly strict mediterranean diet, or at least minimally processed food - which is nutrient dense, but not necessarily calorie dense. I'm going to start adding in more heavier, high calorie foods that are outside of a med/low processed diet. I'd like to keep inflammation down through diet, but in this case keeping my weight in a healthy range is important too. I'm realizing that always doing things in an optimal way to help myself can be difficult in this MPN journey. I'll have to be flexible and make some changes along the way, particularly with adjusting to medication side effects.
Is your weight loss clearly connected to the IFN? My weight loss was not closely tied to IFN, more to Covid early 2020, untreated MPN at the time, and a 2nd round of weight loss in the run up to Sjo. (118 lbs at 5'-7" at min wt).
But any complication that is sudden, persistent and to large effect can be a concern.
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