Hi all! New to the forum, what a great community and resource.
I was diagnosed with PV recently at age 53 and started a Pegasys a month ago, only 45 mcg every two weeks for a slow start.
No initial side effects, but 10 days ago got a sudden ear infection that hasn’t responded to antibiotics. Fullness, hearing loss in one ear, and intermittent ringing in both.
Doc says it looks inflamed like an outer ear infection and I did have cold symptoms, so that makes sense. Yet given it isn’t responding to medication, I am wondering if it could be Peg related as an autoimmune side effect.
I appreciate any info you all have. I have an ENT referral but with Autoimmune inner ear issues I know you have to act fast to protect hearing.
All the best to each and every one!
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Fabfam5
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This is a bit of a dilemma for you. Have you been in contact with your haematologist or CNS to discuss your concerns? It maybe just a stubborn ear infection, especially as you mention having symptoms of a cold, but I do think your concerns are valid.
You are right on the ‘act fast’ with autoimmune inner ear issues. I know this from first hand experience with my husband who has RA, a systemic autoimmune disease. He basically went deaf overnight in one ear. His GP was ‘on the ball’ and immediately put him on high dose steroids, but he has since lost 60% hearing in that ear. So, I would advise you to speak with your haemotology team for their advice.
Thanks for the prompt reply mhos61 and for sharing what sounds like a difficult situation with your husband.
My hematologist agreed it’s a valid concern but did not press for speed with the ENT referral. She said AIED is a rule out diagnosis as there are no definitive tests so it should be seen by a specialist before going down the autoimmune rabbit hole. I don’t have an autoimmune Hx and my primary said it looked just like an outer ear infection.
I could move faster and get some prednisone going while I wait for the appointment, but don’t know if there are potential interactions with Peg?
I suspect this will pass as a stubborn ear infection but in the age of Dr. google and having a new MPN med there’s that nagging worry that wants to be heeded.
The positives are you have no autoimmune history, your Pegasys dose is ‘low and slow’ and your GP refers to an ‘outer ear infection’. Having said that, it does no harm to remain cautious/suspicious. We have to be our own best advocate.
Sorry to hear about the ear infection. Per ePocrates there is no drug interaction between PEG and prednisone but there is an interaction between aspirin and prednisone. epocrates.com
Monitor/Modify Tx prednisone + aspirin monitor bleeding s/sx: combo may incr. risk of GI ulceration, perforation, bleeding, incl. life-threatening; may decr. levels of aspirin, efficacy (additive effects; incr. clearance)
Additional Considerations peginterferon alfa 2a in Pegasys When used to treat HCV, caution advised w/ narrow therapeutic index drugs extensively metabolized in the liver; viral eradication may improve hepatic metabolic function, decr. levels, efficacy of concomitant drugs.
You are wise to consider drug interactions before initiating treatment. It is always best to check with a medical professional in addition to checking yourself. Your GP can look up the potential interactions when prescribing. Pharmacists also do an excellent job reviewing interactions.
You are also using good judgement to act quickly on the ear infection before any permanent damage is done. This should be considered an emergent issue that requires immediate attention. It is important to distinguish a bacterial from fungal outer ear infection. The treatment is different. This recently came up for me when the GPs kept trying to use antibiotics on a fungal infection. The ENT treated it with an antifungal and it cleared up in three days.
I 2nd what mhos61 says. There is a window of 2 weeks max from what I have gathered. Steroids are the usual Rx for this. But if your regular Drs are not helping getting an ENT in timely matter is not easy, and getting them to agree to the treatment is another step. Have you looked into visiting emergency? At least in the US here one can call them to ask whether it's a service they can offer. I've called several times in my journey.
I got tinnitus last Fall from a different med- still not sure the outcome, and Sjogren's A-I from a vax + IFN. You're right to be alert for A-I developments while on IFN. Best to have a rheum on your team.
Another possibility is antibiotic resistant infection. Has your Dr proposed to test the strain?
Hi, I've had otitis externa twice in the last 6 months and am on Pegasys injections weekly x I found it very painful but it cleared up quickly using the otomize ear spray prescribed by my GP...It contains dexamethasone and neomycin....so a steroid anti biotic mix. My GP said it happens when your tubes are blocked...x hope it gets sorted for you x
EP guy covered this pretty well, but was going to ask the same thing. Have they tried any steroids or steroid drops? Even if this works doesn’t necessarily mean it is autoimmune. In my years of practicing family medicine before I did dermatology, I had to give steroids for these type of ear issues. Keep ENT appointment but ask GP about some steroids if they are appropriate
This is all very helpful and on point. I think the fact that it's the weekend and theres an intense storm is the only thing keeping me from being seen in urgent care today to accelerate the diagnosis and treatment. I'm not aware if there is a way to see an ENT emergently but maybe a good GP can shed more light or get a weekend consult with an ENT.
As you all say, if it is bacterial, viral, fungal, if the eardrum is perforated - all would change treatment. Thanks again, I'll let you know.
I went completely deaf in one ear on double your dose once a week. There was technically nothing wrong with my ear but we paused treatment and it recovered. I’ve restarted at your dose weekly and now has two ear infections and bad psoriasis in my ears (I had psoriasis before with interferon). So keeping the specialist up to date on this will be important.
by the way I was advised to go to A&E but all they could do was rule out stuff - the Christie performed a scan to check my ear canal. I also got my hearing checked and took the results from the last two checks so they could see the difference. I also have louder tinnitus.
All your input has helped me see its worth being the squeaky wheel and this is not that uncommon.
I got GP to start me on 60 prednisone today while I wait to be seen by ENT on Monday for closer investigation. Hopefully it’s protective of my hearing while the jury is still out on autoimmune or infection.
Don’t love being suppressed by INF and steroids at the same time but hearing comes first.
I think that’s a very wise decision; you have advocated well! Hopefully, it’s not autoimmune related, but now your GP and MPN team have been made aware of a ‘potential issue’ going forward in your treatment and act accordingly if necessary. That can’t be a bad thing from a patient perspective.
I bet accessing the steroids, you’re feeling a sense of relief?
First, please let me clear up some apparent confusion.
Otitis Externa is an infection of the outer ear canal, and as such, it is not associated with colds, allergies, or other upper respiratory symptoms. It is distinguished from a middle ear infection [Otitis Media] by inflammation and swelling of the ear canal walls, and tenderness to pulling on the outer ear [pinna]. While it may occasionally require oral antibiotics and/or steroids [see Malignant Otitis Externa], all that is usually necessary is the use of topical [in the ear canal] ear drops with an antibiotic and/or steroid.
As Hunter said, there is also some possibility that a fungal infection could be to blame, but regardless, because it is limited to the external ear canal, outside of the ear drum [tympanic membrane], it virtually never causes serious or permanent hearing problems- even though with swelling of the canal walls, it can be very painful and interrupt hearing temporarily.
In contrast, Otitis Media is often associated with viral upper respiratory infections, allergies, and can potentially cause hearing loss, if not adequately and promptly treated. This problem is caused by the mucus membranes in the Eustachian Tubes, which connect the middle ear and the nasopharynx [back of the throat/nose] becoming inflamed and swollen and closing off the normal pressure equalizing functions of the tubes, in addition because it becomes essentially a closed space, bacterial overgrowth in the fluid retained in the space can occur- this is the classic ear infection, which is so common in children.
The problem can be that although the basis of the infection is a function of the closed-off space, many providers just treat the infection/bacterial overgrowth with an oral antibiotic, and do not adequately address the Eustachian Tube Dysfunction that is the root cause.
In addition to the oral antibiotics, we usually also recommend at least few days of a nasal steroid, usually coupled with no more than 3-4 days of a long-acting nasal decongestant spray [Afrin], and/or oral medication [12-hour Sudafed or generic equivalent] [NOT phenylephrine- which is useless!]
See here:
Correct Use of Nasal Sprays for Eustachian Tube Dysfunction:
BTW, the recommendations to seek care from your GP/PCP are all in order- in part because there are possible contraindications to all of the medications discussed above- e.g., poorly controlled blood pressure can be worsened by use of oral and/or topical [nasal] decongestants.
Thanks PhysAssist for the background and helpful links. I was told after being seen by GP that any primary infection I had is clear but the ear drum is "inverted and injected" due to eustacheon tube restriction. Hence my limited hearing. He felt any autoimmune issue of the inner ear would probably include vertigo and more tinnitus, which I don't have, so it is more likely a eustacheon tube issue than a pegasys reaction.
While I have been on oral antibiotics and now prednisone in an abundance of caution to protect hearing and help things move along, he advised those treatments have limited effect.
Before I can be seen by ENT they have me doing an audiology test today to assess hearing. Seems pointless and obvious but it gets me moving forward.
Really hoping this is mechanical and temporary. A spray might do the trick - I thought nasal steroids take a couple weeks before being effective.
If you don't have significant issues with uncontrolled high blood pressure, taking12-hour Sudafed [or store brand/generic w/ actual pseudoephedrine] [as opposed to phenylephrine] along with some Afrin [or again off-brand w/ same active ingredient] and following it with the nasal steroid will likely give you the quickest effect.
BTW, I also lay supine for about 5-10 minutes, so the medication can drip down to the Eustachian Tube openings, and then I hold my nose and blow- then I sit up and do it all over again with the nasal steroid, after I feel the [rapid] decongestant effect of the Afrin [Oxymetazoline].
It usually works a lot more quickly for me this way, vs. depending on the nasal steroid alone.
That said, while nasal decongestant sprays like Afrin are best used for a very limited duration- say no more than 3-4 days, to avoid developing rebound congestion.
Hi All, I wanted to follow up after pursuing tests to confirm whether my sudden onset ear infection and hearing loss could be related to Pegasys. The consensus from ENT, audiology and MPN is that it was likely the result of viral middle ear infection that can sometimes have residual fluid for 3 months or more. They felt that if it was an autoimmune attack on the inner ear then vertigo, tinnitus and sensorineural hearing loss would be evident. Fortunately, my hearing test shows only conductive hearing loss that is reversible when the fluid resolves, and I don't have vertigo.
Some of my hearing has come back and there's no worsening symptoms so I have resumed Pegasys. A relief.
Thanks for all your support and encouragement to be proactive and rule out any serious issues.
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