Pegasys causing Depression

[Carol0925]

Edit…. I spoke with my MPN Team on Monday and took their advice. I’m feeling much better now and thanks for your messages etc. Hello, I’m having a pretty awful day today. Woke early feeling really down, bursting into tears, crying for most of the morning and feeling anxious. I only inject 45mcg fortnightly and certainly haven’t had these feelings/symptoms before. Never been higher than 45mcg. Started Pegasys approx 6-7mths ago. My last injection was two days ago. I will of course be contacting my MPN Drs to discuss further. I really don’t want to stop it unless absolutely necessary. Just wondering whether any others have had to stop it due to low mood etc.

[RoundTheWorld]

I can’t offer any advice as too new to it but sorry you’re having a rough day.

[Carol0925 in reply to RoundTheWorld]

Thanks you for replying.

[EPguy]

I suffered a different rare worst case outcome with Besremi IFN. I had only a brief warning. (See my post Last Dose) I was on a relatively low dose and my Last Dose was reduced.

Depression is a known possibility on IFN, and shares the Black Box warning with autoimmune disease. (A-I) Looking carefully at the PEG label, bad psychiatric events can be irreversible, which I had not known before. Besremi has equivalent warnings. I can state that my A-I is irreversible.

" In many, but not all cases, these disorders resolve after stopping PEGASYS therapy" Depression and related conditions are one of the disorders.

Peg label- See section 5.2 and other sections. Table 4, page 6 is dedicated to Adults Patients with Depression. The doses they list are higher than many for MPNs but your reaction at 45 is a concern.

accessdata.fda.gov/drugsatf...

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With this info my opinion is to discontinue until you can discuss with your Drs.

[Carol0925 in reply to EPguy]

Thank you for replying. I am discussing with Dr today.

[ainslie in reply to EPguy]

Good info and good advice, I didn’t know psychiatric issues can be irreversible, they kept that one quiet

[EPguy in reply to ainslie]

I agree it's not as obvious in the label as A-I. I think A-I risk is still the top concern for potential stealth and non-reversibility.

[gdpone in reply to EPguy]

I would humbly like to add that I’ve read a study that noted they aren’t sure if interferons strictly cause irreversible depression or if it’s causing a relapse in people who already had recurring depression in the past. If I recall correctly of those who did get depression while on interferons, the vast majority recovered without drug intervention (SSRI), and another majority of those that didn’t recovered with SSRI treatment. Only a tiny % were irreversible even with treatment, which is the camp they are not sure about and what’s relevant here.

[Spanelmad]

I wouldn't take another dose until you have spoken to your MPN specialist.

[Carol0925 in reply to Spanelmad]

Thank you for replying. I’m speaking to Dr today.

[Kari1961]

I've never taken it - I take Hydroxycarbamide. However, the reason why my Haem advised me not to take it is because I've had two documented cases of depression in the past. The first was 'hormone-related' (postnatal depression) and the second was after a close family bereavement. My Haem said severe low mood was one of the major side effects of the drug. Hope you start to feel better soon.

[Oscarsboy in reply to Kari1961]

Yes I have been told the same too.

[hunter5582]

Sorry to hear about this downturn. This kind of symptom can happen for different reasons. An interferon adverse effect is on the list unfortunately. Your plan to follow up with your MPN care team is spot on. Hope you get this resolved ASAP.

[LeoTravels]

Hi from Australia 😘

I have only just started Pegasys however my Haematologist is carefully monitoring any reaction. It is known to cause mood changes so please discuss with your medical Dr managing your treatment.

All the best to you x

[plum27]

I have been taking Pegasys for a few years now. Initially and for the past year 60 mcg/week but for a while 45 mcg/week. I have some days when I feel 'low': not much motivation for anything and 'tired' - not getting out of bed to do anything without great determination. But nothing worse than that fortunately. My Haematologist cautioned me about depression, saying to get in touch if I have any problems, to have my family monitor me as my perception might not be the best, and I notice careful assessment of my mood has become a significant part of each visit. I don't think the changes in dose made much difference to my mood, though the higher dose did ramp up the general malaise a bit. The first few months were a bit rough for me, but after a year I had adjusted and was much better. I don't know if depression follows the same pattern as the other side effects. I hope you can have a consult with your Dr. promptly and in the meantime that you have some good company. I agree: don't take any more until you talk with the Dr. Mine said, when I have gone on vacations, that missing a week or two isn't serious.

[Arnoldthecat]

Hi. Yes, i had to stop taking it after a couple of months as it really affected by mood.

[Bridie123]

Don't forget that although the peggasys is keeping the platelets in order, it is affecting the rest of your blood aswell. Are your vitD, B12, iron etc okay?I saw my haematologist last week, who chirpily said my platelets were in the normal zone, but only after being pushed by me did admit that I am a bit anemic and I glanced at her computer screen and saw other things marked up red.

They don't tell you everything, so don't assume that peggasys is doing this directly and rush into a change.

Hope you feel better soon, have a little rest.

[Carol0925 in reply to Bridie123]

Thanks for replying. My VitD, B12, iron all ok. I have access to all my results from the Hospital, so always check them with a fine tooth comb.

[AndyT]

Hi Carol - sorry to hear about your problems.

I’ve had episodes of relatively mild depression both before and since starting on Pegasys but decided to give it a go anyway.

A couple of years after starting Peg I had an episode and agreed with my haematologist to take a break for a couple of months to see if that helped. Nothing changed so it didn’t seem to be related to Peg and I went back on it - taking other steps to address some issues and a short course of antidepressants to get me back on track.

I’ve had a few ups and downs since then but can normally identify what is causing them and have stayed on Peg. I’ve come to the conclusion that it’s the way I react to stress that’s the problem, not Pegasys, and have found ways of coping.

Great that you’re speaking to your doctor and I hope you get sorted soon.

[Carol0925 in reply to AndyT]

Pleased to hear it wasn’t Peg related. You’re so correct in stress reaction etc. As I mature (67yr) I seem to get more stressed and anxious at times. I take Nortriptyline for Chronic Nerve Pain. I actually feel a little better today and think maybe it was a one off, perhaps feeding into it too much. Will be speaking with my MPN Dr at midday (ish). It always helps coming here to share and support.

[RedCardRob]

Firstly, well done for getting to the forum and speaking about it. I've been on peg 45mcg since February, initially every seven days, now ten days.

I have had depression (not enough to get meds) in the past and was one of my watch out for. When I went from 7 to 10 my zero enthusiasms reduced as well but occured randomly and not injection related.

Everyone is different, so depending on your results, there will be a way forward suggested by you mpn consultant.

[16Gardinia]

Hi Carol In summer of 2023 I was started on 90mcg Pegasys weekly going down to 45 mcg. November 2023 through to April this year I experienced three different inflamatory conditions, one of which is still ongoing. I also noted a significant drop in my mood. I am now on Ruxolitinib and hoping for improvements. I would certainly mention your observations to your doctors. Wishing you all the best.

[Carol0925 in reply to 16Gardinia]

Thank you, can I ask what your three inflammatory conditions are?

[16Gardinia in reply to Carol0925]

Hi Carol I experienced costocondritis (inflammation of the cartilage between sternum and ribs), pericarditis (inflammation of the outer lining of the heart), and some inconclusive lung inflammation resulting in fluid on the lung. I am mindful this is just my experience with inflammation and many people do very well on Peg. It did lower my platelets to levels of 15 years ago. The shift in mood I understand is more common and worth exploring with a doctor. With warm regards.

[ainslie]

sorry to hear your feeling low, I had similar experience on Peg, there is a possibility it’s not the Peg and a Peg break (check with doc of course) would clarify. My low mood recovered after a week off Peg. Some docs suggest mild antidepressants if low mood on Peg , I didn’t want to go there but some people do.

[Joetcalr]

hi Carol, you didn’t mention your haemoglobin level. I took peg for 18 months and ended up feeling that it was killing me as I had so little energy and felt depressed. After I’d come off it I discovered my haemoglobin levels were down to 86, which may have been why I felt so dreadful. I think EPO is used to counteract that and get the levels up again.

Something to check. Good luck Jo

[Carol0925 in reply to Joetcalr]

Haemoglobin was 130g/L (ref 120g/L - 165g/L.

[KLCTJC]

I am an anxious person by nature and I can cry on demand! I have always been a crier and sadly passed it onto my daughter! I was like this before starting Besremi. But I know the feelings and want you to know I hate you are having a bad day. I hope it gets better soon. And hopefully you can find a way to stay on your meds and feel better. ❤️

[Carol0925 in reply to KLCTJC]

Thank you ❤️x

[GardNerd]

I'm sorry you're going through this! I would definitely discuss with your doctor as soon as you can.

I'm on Besremi, and I went through a period of melancholy/low mood/irritablity. It lasted a few months, never got too bad (my spouse might disagree), and eventually subsided. It's so different for everyone. Like you, I really didn't want to stop the drug; because I felt it was my best hope for modifying disease progression.

As EPGuy says below, this can be serious with the interferons. His comment is very helpful.

I hope the best for you!

[Carol0925 in reply to GardNerd]

Thanks for your reply. Have spoken with MPN Team and reassured. It was sudden onset and I’m taking Nortriptyline for Chronic Nerve which is a tricyclic antidepressant. So will monitor carefully. I actually feel much better today thankfully but feel well informed after discussion.

[Janis12]

Hi, I take 45mcg of pegasys every two weeks and have been on this ten months now. I have experienced 'flat' mood on and off since commencing this drug and also an increase in the existing joint and muscle pain that already existed. I am very active and I think as a result of being a disciplined person I have been able to carry on but it has not been easy. I can be quite an anxious person but I am 65 years old and many of my friends of the same age are experiencing similar things. I have mentioned the side effects to my haematologist who does not seem concerned but as a result of this we have decided not to increase my dose (I am currently weaning off hydroxycarbomide). I really want the pegasys to work for me so I feel that I will carry on at the present level and see where we go with it but at the same time I do not want to put myself at risk. It all seems a game of swings and roundabouts and we all react differently, it is good you seem to be having better days and of course we cannot blame every symptom we experience on on our medication. Best wishes on your journey.

[ritaandscooter1]

Does not sound like this drug is going to work for you. Your described situation is very similar to my reaction in regards to the depression. I started out on 45mcg weekly and my ALT/AST shot up immediately to 4x the level it should be. My doctor cut the amount in half to 22.5mcg and the liver levels went done to proper levels but found myself flat lined with my mood and then bursting into tears for no reason. I have never had problems with depression ever. This is definitely not a good way to go through life. I too wanted this drug to work for me. There are other drugs out there besides IFN. Quality of life was and is very important to me. I never needed to go on IFN to begin with (low risk) but thought there would be a chance of remission. IFN is very toxic drug and works for some people but there are many of us that can't tolerate the side effects one being depression. I have been on 2 aspirin a day and phlebotomy as needed for years. Quality of life has been good except for the fatigue due to low iron. Best wishes to you! Kerry

[Exeter21]

You need to speak with a good MPN as Drs are not qualified enough in knowledge of our treatments. Guys Hospital London have an amazing MPN team & would be more than happy to speak to you if you ring them or email. Julia UK.

[Carol0925 in reply to Exeter21]

I have a great MPN team in Oxford and spoke to them on Monday.

[Exeter21 in reply to Carol0925]

Brilliant 👌

[Exeter21]

It seems unusual to cause this after length of time on Interferon. I know if you have a history of past depression they will not prescribe this drug . I am 45 monthly. But do not get depression but as anyone we can be prone to off days occasionally if something happens in our lives. Contact an MPN they are experts 👌