Im so sorry for the length of this post but I don’t know what to do so feel somewhat helpless so felt I needed to explain.
. It’s taken me around 5 years to pluck up the courage to reach out with regard to this, but I feel like I’ve now reached rock bottom & am hoping someone may be able to help.
On diagnosis of ET I started on Interferon, which has worked well to keep my counts in check.
I noticed after a short while that I felt like I was losing interest in things around me (hobbies, friends, family - pretty much most things). At this point I felt very isolated so I reached out to Macmillan who kindly offered me some therapy. I attended hospital to have an initial face meeting & as a result they said it was necessary that I have a course of therapy with them. Unfortunately covid then came so I was told that their counselling wasn’t going ahead.
Throughout the covid period I still found that I continued to feel a disconnect with more & more. As covid eased I re approached Mac Millan, concerned that I was feeling more detached & isolated and had lost all excitement for anything in life.
This resulted in a course of therapy with them online (video call). I explained to the therapist & she said I was having normal reaction to dealing with the diagnosis of a chronic disease. She suggested looking for other “new” things that might renew my interest in life and gave me some coping mechanisms to “deal” with my issues. One was to find time on my own, close my eyes & reassure myself I was ok. Which I’ve done since but I’m a way I was perhaps isolating myself even more by doing this. Also I didn’t feel any motivation to try “new” things.
Over the last few years since then my interest in life has further declined & now diminished.I no longer work & I feel no connection to friends & family & my wife, although I’ve really tried to stay strong for her sake & not succeeded.
I am 100% certain I started to feel this way not because of my diagnosis (as I was a practical person who has no fear of illness and have never suffered with mental health in my life)) but looking back it feels like & still feels like someone turned off my “feeling & motivation” switch when I started interferon treatment. It’s only now I feel I’ve reached the absolute bottom & am in despair of what to do that I’ve come across articles that show a possibility that there may be a connection with commencement of interferon treatment.
I’m so sorry to put this on you guys but I’ve always tried to encourage others here when I felt I could assist them & I could really use any help assistance or guidance from any of you who might be able to help as don’t know where to turn. Once again, please accept my apologies for the length of the post.
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Threelions
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You don’t need to apologize for a long post or for reaching out when you’re feeling down! Have you spoken to anyone about taking an antidepressant medication? I’ve been on mine for years and it really has helped me.
Also, you mentioned losing interest in friends and family— isolating can definitely be part of depression. In my experience, I avoid people when I’m feeling my worst, but actually leaving the house and spending the time with people I love usually does provide some temporary relief. 🩷
Don’t apologise - shared experience is helpful and I’ve seen you help others.
I’m sorry you are feeling this way. My haematologist regularly asks about mood since being on Interferon as it has a known link to mood disorders in some patients. Hopefully your medical team can come up with practical support - be it a change of cytoreductive medication, more talking or alternative therapy or perhaps antidepressants if that is something you are comfortable with. If the online sessions didn’t breakthrough perhaps more focused in person counselling with a more specialised therapist could offer a different approach / perspective that would help you get back to the old you.
Paul from New Zealand here. I was diagnosed with ET two years ago at the age of 69. At the time I had been taking fluoxetene for anxiety and depression for about 10 years. I have been prescribed hydroxycarbomide for the ET, and continue with the fluoxetene. The first six months or so I was tired and somewhat frustrated, but have since bounced back and have great enthusiam for life. In my experience meds for ET and depression are fine together. Hope things are getting better for you.
There is absolutely no reason to apologize. Unfortunately, depression and mood swings are known potential side effects of the interferons. In fact. they were one of the key areas my MPN specialist focused on when I started on interferons 2.5 years ago. We are fortunate in that there are other treatment options these days which might be able to control your blood counts and not come with the same mental health worries/effects. What you are experiencing is very real and common for some using interferons. It is definitely worth asking your care team (which hopefully includes an MPN specialist) about other treatment options. Best of luck and keep us updated if you like.
You also have to be kind to yourself. We are all dealing with so much. The good news is that you are mentioning it now and there are likely alternatives available if that is the way you and your team decide to go.
Threelions, I sympathize with you. After PV symptoms I lost my job and can no longer do the things I love, like hiking, gardening, exploring, or just spending time with family. It's a huge adjustment, and makes it hard to get motivated about anything. Other than MPN forums, it is difficult to find anyone that truly understands the burden some of us face with an invisible disease. Add in the struggle with medical bills, insurance, and just life in general, and it can be overwhelming.
I can't really offer much helpful advise, but misery loves company and it's good in a strange way to hear that you are not alone. I'm sure that my family, although they've been very supportive, must at times tire of hearing about my never ending PV problems, and the rabbit hole of related research I recite to them.
My dog has truly become my best friend, and he will listen all day long. Especially if he gets some attention, a short walk, and some treats! Now I've rambled on too long, but I hope you can persevere. Best regards.
As others have noted here, IFN has mental health as a potential adverse event. It is one of the several that are serious enough to get this severe black box warning that covers IFN-a that we use.
--
WARNING: RISK OF SERIOUS DISORDERS
See full prescribing information for complete boxed warning.
Risk of Serious Disorders: Interferon alfa products may cause or
aggravate fatal or life-threatening neuropsychiatric, autoimmune,
ischemic, and infectious disorders. Monitor closely and withdraw therapy
with persistently severe or worsening signs or symptoms of the above
disorders.
Specifically:
"Serious neuropsychiatric reactions have been observed in 3% of patients treated with BESREMi during the clinical development program. .. If psychiatric symptoms worsen, it is recommended to discontinue BESREMi therapy."
PEG has the same risks.
--
You indicate the trouble has worsened. It's is not necessarily the IFN, but you say you don't have other obvious reasons. You should discuss with your Dr ASAP .
I have suffered one of those black box events with permanent effect, including some on mental health.
Thanks for your reply. Just to confirm my trouble of feelings of detachment and isolation didn’t worsen but have stayed the same for the duration. It’s just that in the end I’ve found there is nothing left for me to detach myself from hence where I am now.
I understand, you were clear on that here: "someone turned off my “feeling & motivation” switch when I started interferon treatment". That correlation is a strong message. It seems your trouble now is that it's not getting better. I sincerely relate well. A pause is well worth discussing with Dr, I hope you can contact your Dr right away.
Some pts and Drs consider the black box label just a legal formality, we've seen that here. But we unfortunately see these things happening, seemingly in about the percentages they list. Potential good news in your case is the possibility of improvement once cleared of the IFN, if IFN is the source. Pegylated IFN takes a while to clear, so if it is the source of the problem pausing it might not show improvement right away.
Firstly you are not alone❤️. This sounds very much to me like it is the Peg. It can have this effect for some. I have never had mental health problems and in fact have always been the strong one that helps everybody else, until last August when Peg caused panic attacks that sent adrenaline flying round my body continually. Depression followed pretty quickly. I always thought depression felt feeling very sad but I had no idea how it can take away the ability to see all the pleasures in life that you once had. It can be a very deep hole but we can get out of it with the right help and support. I am better now but had to stop interferon on the advice of my haematologist. It takes a while as EP guy said to clear the system but gradually I am managing to get back to my old self and feel joy again. I strongly suggest you speak to your haematologist about your feelings. You can private message me if you would like to chat in more detail. I sincerely wish you all the best with getting this problem sorted and you have done really well to reach out so give yourself a pat on the back. You’ll beat this x
As others have stated, there is no need to apologize. We all understand. It is critical for you to know that you are not alone. Reaching out is one of the best things you can do.
As others have pointed out, depression is a well known adverse effect associated with the interferons. It is also a common reaction to dealing with the symptoms of a chronic disease. Note that some of the symptoms of the MPN symptoms such as fatigue and insomnia can mimic or exacerbate the symptoms of depression. You may well be dealing with a multi-determined form of depression. It will require a multi-pronged approach to manage.
I would suggest starting by not giving up on therapy. There are different approaches to managing depression that may work better for you. There are different levels of skill by therapists as well. One on the best supported evidence-based practices for depression is Cognitive Behavior Therapy. It is important to find a therapist who is well trained in this modality who is also a good match for you individually. You may also want to consider group counseling or a support group.
It may also be worth considering pharmacotherapy for the depression. There are some medications that can help. This is another area where you would need a provider who is a good match and who is familiar with treating depression that is a medication side effect. Your MPN care team should be able to recommend someone with the requisite skill set.
There are somethings to do on your own that can help. Exercise is an effective intervention to reduce depression, both behaviorally and physiologically. This is fairly simple, but not always easy to do. It does work, however. Even getting outside for a daily walk can help.
We all need to develop our own set of coping skills when managing a condition like a MPN. This is my list.
1. Support from my family, friends, and faith community.
2. The MPN forums (my friends and MPN Family)
3. Maintain your sense of humor and find ways to have fun no matter what.
4. Surround yourself with things that are positive and lift you up.
5. Mindfulness practices - I practice Qigong.
6. Say the Serenity Prayer every day and take it to heart!
7. Educate yourself about your condition(s). Knowledge is power.
8. Create a high-quality treatment team who you trust.
9. Advocate for yourself. Assertive patients receive higher quality care. Passive patients do not. Remember that you are in charge of your care. It is your goals, priorities and preferences that must drive your treatment. Empower yourself to deal with the MPN.
More than anything else at this point, know that you can manage this. Have confidence that you will be one of many who do manage the MPN and related symptoms successfully.
Good morning, Reading your post really touched me. I have ET and was diagnosed 25 years ago. I was prescribed interferon some years ago, I recognise the symptoms you describe along with severe anxiety, the side effects of Interferon were too difficult to live with. The hospital that prescribed the drug advised me to stop immediately which I did. I went on to take antidepressants and anxiety medication. Interferon did not work for me but I recognise and appreciate how other patients manage and value it.I hope you find relief, support and answers to why you are feeling this way. Take care.
You do have my sympathy and I know how awful it feels. I find not looking too far in advance, just manage and deal with the next hour or half day. Sending you my best wishes and I Hope you find some relief and improvement soon.
Sorry to hear you're experiencing these problems. When I was on Pegasys interferon I experienced very similar problems to you. I became very anxious, experienced moodswings like I'd never had before and felt very 'flat' about everything in my life. I had absolutely no enthusiasm for anything, and often ended up in tears.In June last year I had to stop the Peg due to a possible auto immune problem. Since I stopped it alot of the problems I mentioned above have improved greatly. I still have the side effects of the PV , and don't always feel mentally 100%...but it's very different now to how it was.
I suggest you discuss the possibility of an alternative treatment with your consultant as soon as possible, and let them know how severely it's affecting you.
You can get out the other side of this , and can and hopefully will improve, as in my experience.
It may be beneficial for you to see an MPN specialist if you are not already doing so .
Sending you lots of good wishes and hope you're able to turn this around.
You really can do this...how you're feeling is not your fault...it really does sound like the medication may be the cause.
This forum is intended for people to reach out and get help and you've done the right thing and been brave in doing so. Possibly your prescribing hospital should have been more proactive in monitoring the possible side effects of taking Interferon. Any decisions about the medication we choose to take has to take into consideration its impacts on our quality of life. That medication is ultimately intended to prolong our life expectancy, but if the cost of that is to risk making that life feel like it's not worth living, it is surely time to reconsider the treatment options.
Don't wait until your next hospital appointment to raise this with your consultant. Contact them now and talk to them. You could even print out your post from here, if that helps to initiate the conversation. Best of luck!
Thank you so much for replying. My consultant said yesterday that he felt, in the circumstances, that they could have detected depression earlier. But looking back it’s not their fault. At a low point, where I possibly would have mentioned it was during covid - when face to face appointments weren’t taking place. By the time appointments were re started I was obviously stuck in a rut, didn’t recognise the signs or possible connection to peg & became only focussed on my counts- which were good due to peg.
I'm really pleased that you have been able to speak to your consultant. That lack of face-to-face appointments were difficult for everyone (including the health professionals) and sometimes with these things it can just be a case of the right person asking the right question at the right time. The problem with depression can also be that the condition robs you of the very impetus needed to tackle it and make things better.
May I be the next person on this forum to say blu its the interferon. You are experiencing the typical depression/ loss of affect that some people get. It’s a reaction to the Besremi.
I experienced a similar reaction myself, after battling to be allowed to try interferon because of its potentially disease modifying effects. I was hugely disappointed, but recognised the severity of the condition.
As has been said, there are other meds to control your blood counts.
you are NOT ALONE!! It took me 6 years to come to terms with my ET. I tried extremely hard to continue with life as normal. I just didn’t want to give in. My platelets rose then so did my meds. Seeing a fatigue specialist helped enormously. It made me realise that I was doing a lot and it was ok to have sofa days. I too could easily stay on the sofa or stay in bed most of the time. Lethargy breeds lethargy. Likewise sleep.
If I’ve been fatigued for a few days I kick myself and push myself to go to the gym and swim. I fall into the water like a beached whale but once I start, despair fades. Mentally I feel better then pat myself on the back and say it’s ok to do nothing all day now.
Socialising is even hard I tell myself I’ll just go for a few hours but then I feel better.
You are already on interferon. Low mood apparently is well documented and associated with Peg. For me it was the opposite. It helped me enormously.
I don’t know your age. I’m 69 and extremely lucky to be able to afford a cleaner. Even more so since I lost my husband nearly a year ago. Do the nice things in life and make the most of your time with your wife.
It’s important your heamo knows how you feel. Maybe the drug doesn’t suit.
If I can help in any way please private message me.
I’m so sorry to hear that you’re feeling this way. It seems to me that you need to speak to your specialist. I was diagnosed with ET Jak 2 in May last year and sadly lost my husband to cancer in the June . My ET doctor gave me two options either interferon on Hydroxy, when we discussed the treatment options she was very honest with me and said that interferon can cause depression and as I was already on antidepressants said I should avoid them . I seems it might be an idea to ring your haematology team again and suggest a different treatment. Fingers crossed that you get this sorted and wishing you all the best 😊
hi Threelions, I felt very down whilst on Pegasys, so I came off it but afterwards realised that it may have been my low haemoglobin that was making me feel so bad (a peg side effect that my haemo didn’t know about). Sometimes people have EPO injections to balance that, so worth checking the level of your Hb.
Also can I suggest the Cinnamon Trust which is always looking for dog walkers for people who are struggling, it’s nice to have a relationship with a dog and not have all the vet’s bills and responsibility! Go well, Jo.
I am so glad you reached out, don't apologise, we all need help and support but we gain by supporting others. Time to make a list of how you feel ( I say this because it helps me) and then look for help and support. Don't give up, there are brighter days ahead. Stay in touch.
Firstly, your post is not too long and I wish you had written earlier. You have been bravely suffering in silence. Depend on the friends here! 😃 we are a safe space, caring and loving. We’ve been there, we know lots
in my 35 years of dealing with therapists, 95% of them are useless. I suffered depression most of my life rid myself of the chemicals in my life and balanced my vitamins minerals, etc
Drugs alter our body. Our mind is part of our body, not detached. The meds we take cause chemical changes that affect the mind. Sometimes severely. Depression is a terrible thing! It’s not sadness. It’s heavy, no outlook, no energy, no want to do even the things we love.depressed people become isolated I am so sorry being in depression, I know the feeling.
Please get to a good functional doctor to get proper blood checks especially on vitamin D, which for us should NEVER be under 50! It’s the sunshine vitamin. Check hormones, etc all play a role
Check under drugs.com and in other Websites “depletions caused by (name of drug you are taking)”. Good place to start.
I rid my body and home of all chemicals, all sugars and foods that I react too. I went on the autoimmune paleo diet, as much organic as possible (whole foods only!) nothing produced!
Routines: liver cleansing and kidney support.
To help metabolism: CoQ10 100mg per day Aceltyl L-Carnitine, to help give energy and stamina before going on walks, exercise or physical work up to 6x 500mg per day I’ve never taken more than 4
I’ve been taking about 10,000mcg bit D daily actually 60,000 per week on Sunday, with some fat because it’s fat soluble lots of magnesium. Make sure your poop is flowing every day if not you’re recycling toxins that affect the brain
1 tsp Apple cider vinegar in water is good in the morning. To reduce inflammation:
One tbsp salmon oil am and pm will do wonders to reduce inflammation. depression is also often inflammation of the brain, not just body
Take a good source of live intestinal bacteria cultures. The dead ones are practically useless
Lots of a good vitamin C, B complex vitamins, No chemical vitamins. The usual multi vitamins don’t do much. We pee them out.
Also important! Check your thyroid for under function!! It slips in slowly without us or our doctors recognizing it. a proper test is done twice first test and second test one month later to catch a Hashimoto thyroiditis. Most drs won’t do that and I suffered for 15 years before a better doctor caught that. I was literally dragging myself through life depending on caffeine to work. I’d do nothing all day at 35 and then couldn’t go for a walk around the block.
I can’t write anymore. I have to go but this is a place to start. Please find some energy to look up some of these. Above all a good doctor to try to balance whatever is happening in your body.
Hope to have helped. Better days are coming dear one!! 🙏❤️
thank you so much for replying. It’s so appreciated. I’m going to go back through the more detailed replies like this in due course to influence moving forward….when I feel I can see things clearly.
Hi, please don’t apologise for reaching out to us and explaining so well what is going on for you. Feel proud, it’s a big step that you’ve taken and as you know this is an open and supportive community. I too experienced very low and disconnected mood while I took Inteferon- it is a main side effect of the drug and was flagged up to me by my consultant before I started taking it. I noticed it almost immediately and it was exactly how you describe it. I just didn’t care about anything and couldn’t be bothered with listening to people, doing things, living my normal life. Have you discussed this with your consultant? It seems like a life changing effect for you. There are other drugs you can take instead of Inteferon and it sounds as though you should have a change. Keep the open communication- its vital for our well being and can only help. X
The main thing is that you are doing something positive about it now. Depression can sneak up on us and as you say can remain hidden behind other more pressing day to day issues. We can’t go back, only forward. You can sort this out now with the support and help of your medical team, that’s what they are there for and hopefully they will be open and helpful …keep in touch and feel good that you’re taking this big positive step. Well done xx
Hi, No need to apologise. Depression can take over your life but there are ways out. I have had 2 episodes of severe depression in the past. For that reason I have ruled out even trying interferon - that and my brother’s advice 😆. I may be wrong but it is worth discussing a change in medication and / or treatment of your depression. Don’t give up in your battle with the ‘black dog’.
🤞🤞So glad you’’ve now stopped the peg. Can take time for normal feelings to return: depression to lift. Hang on in there- me, I’d avoid any antidepressants until you’re clear of the peg.
so sorry to hear of your struggles. It’s very good you have reached out.
Whilst also having Et, Jk2+ , I have never tried any of the medication you have so can’t offer any helpful advice there as others have. (The reason I refused as having even just 1 of the side effects would be worse than the disease). What I would suggest however is request a blood test (hopefully gp will oblige) to look at ‘everything’ especially including thyroid and all vitamins and minerals that can be done. Always get a copy of your test results with ref ranges!! With low vitamin levels don’t expect your Dr to help, you’ll need to do this yourself as many of us have had too. For me vit B12 was a massive life changer.
I would then ask to speak to a pharmacist who specialises in poly-pharmacy to review all the possible interactions + known side effects of any / all medication you are taking.
Maybe you had very good reasons to take ifn but perhaps it might be worth having a break to see if you feel better? Also with other meds you’re on too.
Review diet, sleep etc try and do something everyday that makes you laugh, really laugh! Probably stop watching the news. Reconnect with nature, even if it’s just feeding the birds.
Anag has given you some great tips too.
Wishing you all the very best on your journey to recovery x
Thank you so much for your reply. I am now off peg as a first step. Thank you for all your other tips. I fully intend on breaking down the longer replies, in due course, and look more closely at other changes/improvements to daily life.
Hi 3Lions, I echo what the others have said and it's important that you're not hard on yourself. Self-compassion is very important. I'd like to add a couple of thoughts:
1. Out of curiosity, I've just done a search using "interferon depression" as the criteria and a comprehensive document in the American National Library of Medicine popped up. The link to the document is this:
It states quite early on that "IFNs are associated with a 30-70% risk of treatment-emergent depression". It also states that "antidepressants also effectively treat the condition". It's therefore important that you inform your haematology team asap and maybe make them aware of such information so that they can best help you.
2. I get a sense that you don't have anyone to talk to about this or to offload onto. If that's the case have you considered engaging with the MPN Voice buddy program? This is not counselling but you would be put in contact with someone who you could talk to who has ET and maybe even who is also on one of the Interferons. I'm sure the wonderful Maz at MPN Voice would try to help.
As Hunter says in his points 7 and 9 (and always recommends!) and I paraphrase, better informed patients who take an active part in their care tend to receive better care. By engaging with your haemo team asap it's possible that they can modify your treatment or if psychological help is advised then to refer you to support services within your hospital so that an holistic and joined-up approach can be offered. This potentially would be better than engaging, say, with your local NHS Talking Therapies service who would be unlikely to have access to your hospital records (and vice-versa) and not understand your challenges with ET, interferon etc.
"Between 10% and 14% of the patients discontinue therapy due to a psychiatric adverse event..."
"if psychiatric complications are associated with IFN-α treatment, acute pharmacological intervention becomes necessary and psychotherapy should not be offered alone"
As member ds3372 notes below, this report says most pts respond to medication while on IFN. But this report is in context of temporary use of IFN, implication is the mental health meds would be long term for MPN use of IFN.
Thanks so much for your reply, it’s so appreciated. I consider myself lucky to be under the supervision of the MPN team at guys so am very confident I have a good group of people looking after me in that regard. I think it was a set of unfortunate circumstances (covid & me approaching Macmillan for therapy instead of guys when I first noticed things were different in my life post peg) that prevented it from coming to light. I can’t help, atm, blaming myself for that but I really wasnt Fully aware of what depression felt like as I’d never suffered it before.
Hi Threelions.Firstly, I am glad you have finally contacted our MPN family, it is another step forward.
Our paths are similar, my doc reckons I had ET back in 2016 but not confirmed until Feb last year. During which I retired and COVID happened that screwed up our "world tour"...that has still not happened. Since feb last year I also have lost interest in many hobbies and activities alongside a bit of increased techiness. There's no enthusiasm there.
However, I listened to a couple of friends and they persuaded me to get back to (very) old interests and set targets. One of which was to save an endangered fish by being first to breed it in captivity...I haven't managed it again...yet.
My wife also has been a constant source of proactive disagreement that I have learned to love as I do have a dislike of "yes" people!
Finally, I also practice two styles of Tai Chi. Added to this I now attend mindfulness Gigong that has helped to calm my thoughts when I wake up at 3am.
I hope my input has reassured you a little that somewhere there is a way forward.
Thank you so much for your input. It’s very much appreciated.
I didn’t really listen to my wife’s proactive disagreement which has has damaged our relationship severely. I wish I’d listened more but I just wanted to tell her my counts were ok and always thought I was protecting her from worrying about me. I didn’t see we were drifting apart and that’s another reason why I’ve now hit the bottom.
So sorry that you are feeling this low and have been for so long but well done for admitting this as it's your first step towards a change. As others have said I also believe that you need to speak to your haematology team asap and consider changing medication. Also MPN Voice has a buddy programme and it might help for you to have someone to chat with who has been in a similar position so you can open up. Also attending one of the MPN Voice Forums near you is a fantastic opportunity to meet people and learn more. I was emotional the very first time I attended one as it had been 20 years that I had felt really alone in my journey and it's uplifting to share. I commend you for being so brave in trying to tackle this numerous times already and remember you are not alone in this and this is a first step to a big change for you. Well done for opening up as it's not easy and you are now on your journey of change.
Thank you for your reply. It’s so kind of you to respond. I saw my haematologist team yesterday & peg stopped with review of medication being looked at.
I’d always planned on going to one of the MPN forums post diagnosis but tbh covid hit & ive since forgotten or overlooked them.
Please seek support from your GP to initiate a thorough review of your current situation. I say this because I also experienced the same side-effect from Pegasys. We are bio-psycho-social beings. This is a bio issue. It is unlikely that therapy alone will significantly relieve this experience although all the suggestions already made, after discontinuation of Interferon, will help you re-claim your mental well-being.
Oh my goodness! Please,don't ever apologize .I have pv and not ET but interferon put me in hospital last year because it made me so ill
I had everything from severe pain, brain fog, depression ( not as bad as yours by the sounds of things though) it attacked my auto immune system .. the list went on
Please bang the table and tell your haematologist you would like to discuss trying another drug
Our doctors are wonderful, but I don't think concentrating on the side effects of drugs is top of their priorities.
You must be your own project manager here and try and be strong enough to stand up to the medics
Thanks so much for replying to me. It’s very much appreciated.
I’m so sorry you had a bad experience on peg.
Thankfully I’ve not had to bang any tables for medical attention . I’ll do a separate post to bring everyone up to date with the medical response that I’ve received after reaching out to this lovely group.
Don’t worry about the length of your post and it’s awful you have been suffering so long.
It rung a bell with me, when I tried Pegasys in 2012 I had very similar issues, normally I am pretty upbeat and optimistic and very interested in things. After 3 weeks on Pegasys all that had gone, no interest or enthusiasm for anything or anybody and felt depressed, I quit and within a week I was back to being me.
I am amazed your medical team have not been checking on you and helping.
As others have said depression is a fairly common side of the interferons.
My view is you need to take quick action , 5 years as you have been is awful and probably avoidable.
Although counselling and tuning vitamins and meditation etc may help a bit I doubt it is anywhere near enough.
I think you have two options
1. Get off Peg and if you need meds try another one, you of course must get a hold of your Haem asap and discuss it first.
2. Try a antidepressant while staying on Peg, if your Haem is good he/she will know the various antidepressants to try.
You have done amazingly well to battle this for so long but 5 years is too long for sure.
Sometimes when one is depressed it’s hard to get motivated, it can help to write down a plan of action and the make sure you stick to it.
You will get good support on here so don’t isolate, keep discussing and asking about it on here until you get to where you need to be. Many of us have been through the wars at least once.
Well done for starting the process, now more action is needed.
We look forward to hearing all about how it’s going and don’t hesitate to ask.😀
One more thing, somebody else on this thread mentioned thyroid, I suspect you need more than that but for completeness I will say that for anyone on interferons it’s important to keep an eye on thyroid. Interferons can lower thyroid and thyroid is very important to health in many ways but specifically if low it can affect mood and fatigue and motivation, clarity and quickness of thought and many more. It’s easily checked by blood test and easily corrected with thyroid meds. Most docs will only measure TSH and will only prescribe if TSH is over 5 or 10, ideally it should be one or at most 2. What they should and can be measuring is Free T3 and Free T4, both should bee at least 1/2 way up range and ideally Ft3 should be in upper quartile. When testing thyroid it should be done at 9am latest , well hydrated, and no biotin (in B vit complexes) for a week prior.
Thank you so much for replying. I so wish I’d noticed as early as you. In a way I guess I did & reached out to Macmillan for counselling a few months after treatment started. Then there was the covid shutdown and then I had my Mac Millan counselling & just did what they said. I’d never had counselling or depression before so thought as long as I did what Macmillan told me I would cope. & here I find myself 5 years on.
Depression is an insidious condition. It creeps in and takes over but we plod on, pretending everything is fine. At least that was my experience years ago, pre Mpn. I eventually crumbled and was signed off sick, referred to occupational health, counselling, GP, antidepressants and so on.
On the upside life gradually became good again but it’s on the back of that awful time that I have not considered interferon treatment and the Mpn clinicians treating me also advised against it.
Assuming interferon could be contributing to how you are feeling it’s vital that you open up to your Mpn team. If not due to see them soon then now is the time to ask for a priority f2f. I think you are a Guys patient and I doubt they will keep you waiting.
And don’t feel daft for quietly battling on… it’s likely what I would have done too.
Thanks so much for replying. It certainly creeps in & takes over. I’d always imagined depression as being angry & sad - something you could never fail to miss. Not something that subtly tells you “you don’t want to do this or that any more” and “ you’re better off saying no to any suggestions people make to do something “until a point where you’ve detached yourself from everything you loved over a long period of time & got nothing left. Worst part is not realising it as it’s happening.
My doctor asks me every time I go if I am depressed on Besremi. It absolutely is a thing on interferon. I 100% would talk to your doctor and see if you could try a trial off of it and see if this improves. If they don’t think that is appropriate I would see about starting something. And they may do both. I don’t take an antidepressant, but I take restoril to sleep! I needed something once I got diagnosed and this helped me sleep. And every time I ask my doctor she tells me just keep taking it. So, I get it in a different way. I absolutely hate you feel this way. We are all here for you.
Thank you for replying. I think it would a good thing for consultants to check on interferon patients regularly re depression. But my understanding of depression was clearly different to what it actually is. If I was asked early on, or at any time for that matter, I would have said no. If someone had explained depression in more detail & linked it to a simple “this is very important-are you losing interest in things like your hobbies, going out with friends etc” then the penny might have dropped.
Hi there--I've been lurking on this forum for a while but haven't posted. I felt compelled to respond to this, though, as a person living with ET and a psychiatrist working in psychooncology. I can't give you specific medical advice but I will say that, in general, IFN-induced depression is common and likely underreported in many of the recent large trials of pegelated interferons for MPNs. For most people, it responds well to an antidepressant, though people respond idiosyncratically to any given antidepressant and you may need to have a trial of more than one med to find the right one for you. Therapy can be an important component of treatment--and is a cornerstone of treating mood disorders in general--but I tend to recommend including a medication in the treatment plans of patients that have depression due to medications or as a manifestation of a medical condition (e.g., an endocrine disorder). In general, there's no problem with using any of the commonly prescribed antidepressants with interferon. For many folks who want to be on IFN given the likely disease-modifying characteristics of this treatment, antidepressants can make that feasible without sacrificing quality of life. I definitely recommend that folks discuss this with their treatment team. Sending you best wishes!
This thread has been enlightening. The potential psychiatric outcome of IFN can usually be treated. As I posted a reply above, the report found by member finlay2106 cites:
Of the 30-70%, "Between 10% and 14% of the patients discontinue therapy due to a psychiatric adverse event..."
As you suggest here, "if psychiatric complications are associated with IFN-α treatment, acute pharmacological intervention becomes necessary and psychotherapy should not be offered alone"
--
Is that 10-14% consistent with your experience? This would suggest the intervention was effective, or not required, for most. But intervention was either not offered or not effective for this cohort. "Not offered" is an opportunity. For MPN pts, the meds would be long term compared to the Hepatitis example in that report. So MPNs would point to more chronic treatment vs acute in that report.
--
I suffered a different and permanent untreatable worst case IFN outcome, and thus indirectly came to know some about some mental health meds.
Thank you so much for replying. I can’t tell you how much it means that you’ve replied. You clearly have an expert take on this. I have read & noted your kind reply.
I just wish that I had the same knowledge as you so I could have recognised the signs earlier.
Three lions, my heart goes out to you. I want to help make things better, but don’t have any idea how to do that. I do want you to know your community is here and cares about you and your well being.
I have felt the same way, but find distraction by doing things even if not everything I wanted, I do wear myself out and can rest until another day.
Have they offered medication? I am reading a lot about pathways in our brains. If we have some negative pathways, we need to create new ones. This is something you can research online and speak to a therapist about. There are also apps for your phone that help create new pathways.
I am so glad you braved it and wrote to us. I am in the US, but maybe someone closer by could actually meetup. I have always thought we need to have groups where we meet in person.
Find someone to give you a hug. A hug is a powerful tool for our brains.
Please continue to share, that alone may help release some of your concerns and help.
Dive Goddess, your reply is so kind. I will be doing a separate post to update the amazing folks here with regard to what happened since I reached out here. I have been totally overwhelmed by the responses and they formed the thread I need to cling onto before I completely fell.
Threelions - you have certainly struck a chord with this forum. I say "thank you" from the bottom of my heart. Over the last few years, my body at the age of 75 "learned" anxiety and it has been a challenging journey. Please don't give up hope. The many suggestions offered here all have value and I assure you, there is an answer.
For me, it can be as simple as daily walks in nature with my dog (and an occasional xanax although I have been making progress on reducing the dose). You just have to start somewhere - of your choosing - and take little steps to pull yourself up. I know it sounds easy and it isn't but pick one or more of the great suggestions offered here and begin your turnaround.
Please stay in touch with us. You have a huge base of support here.
I commend you for your courage in sharing your experience! Do not apologize, quite the contrary, I'm grateful you are advocating for yourself! You have really pushed through all these years, but the truth is you don't have to any longer because there are alternative treatments available you can discuss with your Hematologist. I myself tried Interferon twice and had the same feeling after about a month. My MPN Specialist took it very seriously and put me on Angrelide (Hydrea was no longer working for me). I'm fairly certain you can incorporate an antidepressant, but first discuss your options when it comes to treatment. Your quality of life is so important and trust me when I say "advocate for yourself." I've been through 4 Hematologist's, each one very different. I finally have an MPN Specialist at Stanford and I wished he was the first Dr I saw because my experience of treatment and diagnoses would have been so different. Do not apologize, or feeling like you're inconveniencing your Dr, that is what they are there for.
I hope this message provides relief and potentially some excited for what is to come! You gave it your best shot, but this is one of the main side effects of this medication so it's important to listen to your body/mind. Brighters days are ahead and this is but a small chapter in your story. Wising you all the best!
Thank you so much for your reply. I’ve got a good team at Guys and after reaching out here & subsequently reaching out to my team I’ve been extremely grateful for their actions.
The odd thing is I never considered it as “pushing through” over the last 5 years. The only way I can describe it as being a bit bemused & frustrated that I didn’t like doing doing the things I used to love, like listening to music that I loved, being with friends & family I loved. I was in a bubble & couldn’t see the damage it was doing to those around me and myself.
Having had depression myself lots over the years I would describe it as being behind a glass wall with all the wonderful things of your life on the other side, even sometimes the hard things too, but you are just watching & not engaging, you can't really partake & you feel outside of the emotions, just flat. It's awful. I saw my brother go through it last year due to a terrible working environment, it was so upsetting to see him shrink to the point that he could hardly hold a conversation. Luckily we are close & I'm experienced in both the suffering & the treatment & improvements, and our family helped & supported him. He hltook anti depressants for a while which helped until he ultimately left he job to pursue happier if lower paid, work.
My dear friend. Never say you hate to put this on any one of us. We are here for this purpose and if " my brother or sister " is down I am here to lift you up not put you down and keep you down. I know what you are going through because I have suffered with suicidal depression off and on since I was 16 years old as of now I am 71 and glad to be alive even though I was diagnosed with ET and mylofibrosis. If you ever need to talk to me I will offer you my phone number. Just message me in here and tell me how to contact you. I am not a licensed therapist but I can tell you I have been through the fire and not burned. Peace my friend
So sorry you have felt this way for so long. The first side effect my husbands Mpn specialist said about interferon when he started was depression and altered mood. If she said that it must be well known and they said he had to tell them immediately if he experienced what you describe. Have you reached out to your haematologist? They should be able to change meds or add anti depressants if that’s possible. Anti-depressants can be really helpful. Hope you feel back to yourself soon
My MPN team are on the case. I must have been warned about possible depression but various factors in play along with me not recognising the signs have put me in this position.
Three Lions from Paddy I wish you so well in your future. For me I am retired but so wish I was working i I have been looking yo home from work 2 days a week I really miss contact to remove my mindset . Everyone is so different which I would hope people would understand. sometimes friends although supportive dont understand some do but many dont. Absolutely best wishes and never give up
So glad they are on the case can totally understand it’s hard to spot the signs especially if you’ve never experienced it before. I wish you well and hope things get better soon
Good morning, I can completely empathise with the way you are feeling having gone through similar experiences. I have completed many courses of talking therapy, CBT etc to help me ‘manage my anxiety from diagnosis’ but I believe that I was more impacted by the interferon than I was by diagnosis. Yes it obviously shook me to my core - I was 31, was no longer allowed to do my job and felt that my future was curtailed - but until I started interferon life continued as normal. Once on the meds it took time to settle on a dose and my mood definitely plummeted, I made the choice to take medication and went onto SSRIs, it was the best thing I ever did. Counselling has its place and helped me get back to myself but it was the meds that lifted the fog. Now that I have stopped interferon, I have been taken off the SSRIs and I am ok. So I firmly believe that some of us are just sensitive to that particular side effect and if I have to go back on interferon I will ask to go back on SSRIs. I view it as the same way some patients are given anti-nausea meds to counter the chemo etc, I will need something to counter interferon. It’s not a reflection of you and who you are, it’s not a weakness, there is and should be no stigma around taking whatever you need to live your best life. There are enough potential hurdles that ET can throw at us so we have to live for now and live well. Please reach out to your GP or consultant and ask for something to counter the side effects.
Good luck - you’ve got this!
Posting again as it doesn’t seem to have uploaded first time - sorry if you get it twice.
Thank you so much for your reply. It really means a lot. I wish I’d noticed the signs. I honestly don’t think the diagnosis affected me as it wasn’t immediately life threatening & could be managed. If anything I saw it as a challenge.
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can totally understand it’s hard to spot the signs especially if you’ve never experienced it before. I wish you well and hope things get better soon 
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