Peginterferon and nightmares

[Lyndjs]

Just wondering if anyone has experienced nightmares whilst take peginterferon alpha 2a. I have noticed some sleep disturbance and last week, my 8th injection, I was asked to increase dose to 90. My platelets had dropped since starting on 45 from 864 to 706 but still high. After my 2nd 90 dose I am experiencing nightmares. Whilst I can tell myself, they're not true, I wonder of their effects whilst I sleep 🤔 and also if this is something temporary or will improve as I begin to tolerate a higher dose?

I am writing this possibly too early but seek anyone's experiences as I see my consultant early Feb and really want to continue with peg.

[hunter5582]

Nightmares are apparently a known adverse effect, but not one reported from all sources. drugs.com/sfx/pegasys-side-... does include it on the list or potential adverse effects.

Common (1% to 10%): Concentration impairment, mood alteration, nightmares, aggression, emotional disorders, nervousness, decreased libido, affect lability, apathy.

Perhaps others have had similar experiences and can weigh in. Suggest you let your MPn care team know about this potential adverse effect.

Please do let us know what you learn and how you get on.

[Lyndjs in reply to hunter5582]

Thank you hunter5582 always very grateful for your support 🥰

[EPguy]

The Besremi IFN label has some further specifics. I often check both PEG and Bes as they share IFN's general attributes and adversities.

Page 10 lists sleep disorder which "Includes insomnia, sleep disorder, and abnormal dreams"

accessdata.fda.gov/drugsatf...

Was your PLT continuing to (slowly) reduce on 45? If so maybe patience at 45 is a safer approach to discuss with Dr rather than a sudden doubling. Even a split diff, say 60, could be safer. I am a top example of the need for careful dosing.

I briefly took an unrelated med that caused intense dreams, but anxiety forced me off.

[Lyndjs in reply to EPguy]

My consultant had wanted me to increase after only 3 injections but agreed to stay at 45 to help with side effects. Initially my platelets increased. He said he would increase dose and once levels improve, decrease. I'm really hoping I can tolerate the peg. I know many pv patients have reported benefits taking this.

Thanks to support on this form, I am growing in confidence and feel I can question decisions on treatment and I am interested to find out if a MPN specialist is part of the MDT team who meet to discuss my treatment plan. All still very new and so much to learn, so I really appreciate your views and comments. Thank you for your support 😊

[Exeter21 in reply to Lyndjs]

I suggest you get an MPN . I did as soon as my Haemotology tried to put me on 90 I refused as 45 was not good weekly.

MPN rang me & put me on 45 monthly & have stayed at that 2 years . My platelets down to 350. It is not a quick fix on Peg & it seems that’s what everyone but knowledgeable MPN s suggest.

LOW & SLOW is their motto & as long as platelets are reducing slowly you should be happy . I feel very fit on this dose . Julia 👍

[Lyndjs in reply to Exeter21]

Thank you Julia. I'm planning to ask if a MPN is on my MDT team, when i see my consultant in Feb. There will be 2 more sets if blood by then too. I'm hoping to stay low & slow too.

Really appreciate your support 🥰

[monarch5000]

Some docs have a tendency to suggest patients DOUBLE their starting 45 mcg doses after a mere 3 weeks. They worry their patients might experience a devastating blood clot if they don't raise the dose fast. I fought back by taking a 65 mcg dose after being at 45 for a month and then after another month I moved to 90. Thus I avoided the misery of rushing the dose too high too fast. I had never experienced a blood clot in my life so I wasn't overly concerned with that possibility.

[Lyndjs in reply to monarch5000]

Thank you for your reply. Yes my consultant wanted to increase my dose, after just 3 week but I managed to stay on 45, as experiencing several side effects. I did agree to 90, 2 weeks ago and have less side effects, but the nightmares are not pleasant 😔 I too gave never had a blood clot, very blessed, I know.

I will talk to my consultant and share your experience too, with regard to 65.

Thanks again for your reply 🥰

[Threelions]

YES, me too. I have wondered many times wether to post my experiences but as I couldn’t see anyone else ever mention it I’ve remained quiet.

The night immediately after taking Peg & the following night are always filled with very vivid, often disturbing dreams. My wife says I talk (often loudly) whilst asleep & frequently sound distressed.

This happens every time, without fail, and has done for over 3 years since I started taking Peg. With both frequency & dosage changing - the vivid dreaming has always still happened on the night of the injection and the following night.

This is one symptom that is definitely related to peg injection for me.

[Lyndjs in reply to Threelions]

Hi,

Thank you for your reply. I too wondered if to post, but the forum are so helpful, I gave it a go. Thank you for sharing your experience. I too have disturbing dreams on the night and following night of the injection, which started once my dose was increased. Last night was better. Reassuring to know, I'm not alone.

I'll mention it to my consultant and will share any advice given.

Thanks again 🥰

[Threelions in reply to Lyndjs]

To be honest, as it only lasts a couple of nights I consider it a minor inconvenience & something worth putting up with, bearing in mind peg is very successful with me.

Also - dreams can’t harm us….I think😀

Perhaps we should keep a dream diary on peg night & have a dream thread here to see if the actual peg dreams are in any way similar? 😀

All the best, Mark

[Lyndjs in reply to Threelions]

That would be interesting. Thank you for you're reply. It's good to know, I'm not alone. I definitely wish to continue with peg. Hopefully, all will settle down soon.

Thanks again for sharing 🥰

[Exeter21]

I get vivid dreams on the few days after my injection as well as cold shivers . It wears off as I am now on monthly injections low dose. I have never been on weekly 90 as 45 weekly was too strong for me. Maybe they need to space yours out or reduce dose. We all respond differently. Julia 👍

[Lyndjs in reply to Exeter21]

I'm going to chat with consultant in Feb. He'll have 2 more sets of blood test by then, so will be interesting to see what's happening, then we can discuss dose.

Thank you for your support 🥰

[Exeter21 in reply to Lyndjs]

That’s good but dont have blood tests too close together. They told me every 6 to 8 weeks to notice change & now every 12 👍

[Lyndjs in reply to Exeter21]

Thank you. I think they've done this as my level is .44 and getting close to needing venesection.

Hopefully I'll need them less frequently,in future.

Thanks again Exeter21 🥰

[Exeter21 in reply to Lyndjs]

No problem I am sure they will get you right soon it took me a while👌 Julia .

[Lyndjs in reply to Exeter21]

I appreciate your support Julia 🥰 so good to hear your experience x

Lynda

[Wyebird]

sorry no nightmares for me.

If you take it at night maybe take it in the afternoon. I do think you should inform your heamo.

[Lyndjs in reply to Wyebird]

I take it at 6:30 am. I'll definitely talk to consultant. Thank you for your support 🥰

[Wyebird in reply to Lyndjs]

Oh dear yes I think that’s a good time.

Maybe you could half the dose and combine with another drug. 2 yrs in and I’m increasing the length of time between each dose.

Sending hugs

[Lyndjs in reply to Wyebird]

That's great to hear. It gives us all hope, knowing your only 2 yrs in and able to reduce frequency.

Thank you for sharing. Living with hope must help 😊

[ciye]

I found it have me nightmares. It can take a while for your platelets to reduce on peg. As for increasing the dose don't let docs push you into doubling l started on 45 and only increased by 1. 45,67, 90 and so on. I lot of Drs day you don't get more side effects as you raise the dose I found they were certainly more intense.

[Lyndjs in reply to ciye]

I totally agree, definitely more interesting. Thank you for your support. I'll talk through dose with consultant in Feb. I'd prefer, low and slow, but I'll listen to their reasons too, and I'm ready to talk about the experiences of others, here on the forum. You guys are living with it too, so valuable to know of shared experiences.

Thanks again 🥰