Postcovid with pegasys: Any experiencers using... - MPN Voice

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Postcovid with pegasys

pvdm profile image
pvdm
11 Replies

Any experiencers using pegasys in addition to post covid? Were there any changes our side effects? Greetings Paul (Et + postcovid)

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pvdm
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EPguy profile image
EPguy

One concern is risk of autoimmune (A-I) disease. Having Covid is now known to increase A-I risk, see example report below that shows a large risk increase (while still being a rare event). IFN in rare cases can have severe A-I events as listed on its label and discussed in posts here.

So the combination likely adds to this overall, still low, risk.

If you have long Covid this may be particularly relevant, as in the 2nd report below.

Watch for any signs such as new fatigue, and especially any new or increased neurological conditions.

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thelancet.com/journals/ecli...

"Our findings suggested that COVID-19 is associated with an increased risk of developing various ADs and the risk could be attenuated by COVID-19 vaccination."

Hazard ratio up to 2.7 in this study, (for MS) meaning 2.7 times higher risk; this is large in these sort of studies.

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"SARS-CoV-2 infection is linked to a substantially increased risk of developing a diverse spectrum of new-onset autoimmune diseases." They said Covid is more a A-I risk than various other infectious diseases.

nature.com/articles/s41584-...

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Another report found a possible relation to the severity of the Covid episode, this may relate to the risk reduction by vaccination.

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Long Covid vs A-I:

yalemedicine.org/news/the-l...

One possible cause - "Elevated levels of autoantibodies, which are believed to play a role in other autoimmune conditions, such as lupus (SLE), rheumatoid arthritis, or Sjögren’s syndrome, have been noted in some patients with Long COVID."

pvdm profile image
pvdm in reply toEPguy

Thanks! I Had 1 week of covid without really being sick, and I did have 5 covid vaccinations...before the covid . So far no anka's or elevated inflammatory levels.

Only stratified heart rate when concentrating and....exacerbation of hay fever though....

Hatchie profile image
Hatchie

Hi I didn't have any issues while on Pegasys with ET post COVID.

pvdm profile image
pvdm in reply toHatchie

Hi Hatchie, Were you also vaccinated before you got covid, I understand this prevents autoimmune woes.. greetings Paul

Hatchie profile image
Hatchie in reply topvdm

Yes I had one vaccination before I got COVID. I was really unwell after the 2nd vaccination and I haven't had any more.

EPguy profile image
EPguy in reply topvdm

The vax does reduce the odds of a bad case, and of catching it, but unfortunately it doesn't for-certain prevent any of these outcomes nor the rare but possible AI effects. This contrasts with the measles vax for example that has a 90+% prevention rate.

hunter5582 profile image
hunter5582

I had no change in my reaction to Besremi following a moderate case of COVID.

TTA_ profile image
TTA_ in reply tohunter5582

Having acute covid that resolved is not the same with having long covid. So if acute covid did not affect your treatment, which is good, this does not mean that there will be no counterindications for interferons in long covid patients.

My hematologist told me they suspected me of not clearing SARS-COV2 from my system 1 year after my infection and that interferons are not for me. They were concerned interferons could reactivate the virus.

Later on, after vaccination became available and it seemed the viral reactivation was less of an issue, the issue was that the autoimmune component triggered by Covid-19 was still there. And still is to the day.

For people who got infected before vaccination was available, long covid phenotypes involved, over and above organ damage and immune dysregulation, viral persistence and some autoimmunity.

Long covid is complex, develops over time and can have several phenotypes. In all cases there is an immune component that is problematic. There is a summary below.

nature.com/articles/s41579-...

So people need to know and discuss with their specialist about this. Who lives with long covid knows how brutal this illness alone can be, and when one has MPNs as commorbidity, this makes life harder, as it can affect some treatments, such as the use of immunomodulators, especially in long covid phenotypes involving suspected viral persistence or autoimmunity.

EPguy profile image
EPguy in reply toTTA_

Your Dr has a deep and wide knowledge of these new and complex issues. I share the pre-vax Covid case (actually it was even pre-test). It could be one contributor to my nightmare. I had a mild-moderate case but no obvious Long Covid (LC).

The reference you included mentions "Long COVID drug candidate BC 007". I checked it out. It's good enough they are going fast into phase 3. This goes right to auto antibodies. It further supports the autoimmune (A-I) angle of LC.

europeanpharmaceuticalrevie...

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What also comes up in your reference is EBV, the Mono virus. I actually posted a query on members' Mono experience on the Sjogren forum. A history of a bad case seems common. Thus a further tie of LC and A-I.

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With all this member pvdm's original question has been a great prompt to look deeper and monitor A-I ever more closely while on IFN if there is LC history.

It is frequently reported that each additional Covid infection adds to the risk of LC. Vax of course decreases these odds, but some risk remains.

We should expect to see very few members replying with this rare bad outcome, with and without IFN. The risk multiplier is from a small base. But among the small group on IFN who have posted on A-I reactions, knowing the Covid (and EBV-Mono) history would be interesting.

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A side note, the descriptions of Long Covid in the reference could just as well describe common parts of Sjogrens.

EPguy profile image
EPguy in reply toTTA_

Another thought exercise, the IFN trials were all pre-covid. Is it possible some or more A-I incidents would have shown for the same studies post covid? Of course we'll never know.

What we do have is this forum as an uncontrolled info source with such incidents being occasionally reported.

Is it possible your Dr has direct experience in this area?

AndyT profile image
AndyT

I’ve only had Covid once, in Feb 2023, and continued Pegasys as normal with no side effects.

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