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.
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Lyndjs
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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.
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.
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 😊
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 👍
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.
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.
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.
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.
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.
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? 😀
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.
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 👍
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.
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.
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.
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