MPN community, I so appreciate your support. I’m JAK2+, PV since Aug 2017; was on Pegasys now taking a break due to “autoimmune syndrome.” My liver and thyroid were suffering.
And because of the low thyroid I’ve been an emotional mess...tearful, moody, a bit hopeless. I’ve had good support from my onc SW. but no word from my onc or attending. You might remember that I’m stuck in a lousy hmo (Kaiser) until I can change in January to a PPO.
How do you cope when you feel this way? I just feel so beat down.
Thanks.
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MaryELWoods
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Hi Mary, so sorry to hear of your troubles and I’m not surprised you are feeling depressed going through so much.
Back in 2012 when I was first diagnosed with PV, apart from feeling awful and not understanding what was wrong, my mum and dad were very ill and nothing else was going right. I ended up in tears at the GP, dragged by hubby and daughter. Since then I’ve been on sertraline, which luckily suited me almost right away. I honestly don’t believe there was anything else that could have helped me, because I felt so down and desperate. I know we are all different but worth a trip to see your GP.
Keep posting, I understand exactly how you are feeling and sending a load of E hugs in the hope you’ll know other people do care about you. Don’t worry about feeling depressed, just admit it to your GP, that you are not coping - that was the turning point for me when I admitted it.
Kindest regards, thinking of you, E hugs Aime xx😺😺
Hi Mary,Sorry you are so down,we all seem to get it.Like Aime ,I have an anti depressant to help me....makes things easier to cope with.I do stop them when I am ok,back on at present as a few worries,family ones rather than my P V. Try to keep positive,hard I know.Sending best wishes to you from a hot ,humid SW France,making things difficult with MP N.Take Care,be well soon.Sally
We have a place in south West France and I'm wondering what the doctors there make of MPNs. I am ET and JAK2 and presently just taking clopidogrel. Stopped the hydroxy due to the disabling effects. Not seeing doctor until Wednesday 13th. I can't wait to hear his 'take' on the fact because he bullied me into keeping it up for another week before I just refused. The depression on top of the many other painfully debilitating 'symptoms' of the drug made it impossible for me to continue.
really sorry to hear you’re feeling a bit depressed.
Hopefully, the break from Pegasys will allow your thyroid levels to normalise and so positively impact your mood. If not, maybe you could consider antidepressants. I took a short course for anxiety a few years back and they do work. You may not need them, because correct me if I’m wrong - but isn’t depression a side effect of Pegasys?
As Amy has mentioned don’t feel alone, keep posting. Sometimes just knowing someone is listening and there for you is so helpful.
Thanks Mary. I’m sitting here alone, crying over Anthony Bourdain’s death, feeling so so sad. Yes depression is a side effect but the thyroid also plays a role in this. I’m hanging in but need to get lifted out of this.
Oh Mary. It’s so horrid when you are feeling the way you are ....please go to your GP for help. This is not just “feeling down” it’s true depression which has a physical cause. You have a lot of things to get on with, but you need help to cope day to day . Depression brings total inertia so then you feel even worse. I too,am taking sertraline which helps so much. It just makes the difference to functioning and not functioning.
So please do go and get some help as soon as you can.
Knowing you,are not alone on this journey perhaps brings you comfort.
Understanding your condition may at times make you feel more unstable and this cause you to feel vulnerable and human.
This web site can lead you to some quiet place safe in the knowledge that it's ok to feel the way you are right now. Chances in your bio chemistry is as it is.
Return to your team and they will sort this with you.
Medication is like a plaster, short term and effective made just for you.
I had depression not related to this condition but with help from caring others and a pill once taken for a while mood lifted.
Gentle walks in the fresh air, being kind to myself, writing a reflective diary helped me to fond my way back.
Hi there! I’m so sorry! I have the same provider as you and feel lonely / alone in my condition. I have ET, Jak2 positive and I have many symptoms of PV but have been told those are un related to my condition. In fact, when trying to determine if I should take Hydroxyrea but my platelet count remains at 585-640...but I have pains in my legs all the time and was having numb fingers toes and. Jand
You have pretty much the same as me and the same response from my 'team'....'that's unrelated' well it is not unrelated if you read of other's experiences and to keep telling us that is depressing in itself because we then just want to know 'why?' am I having these pains, conditions or other experiences.
I just deteriorated to such an extent that life became not worth living and the depressions set in. I could no longer do the things i had been doing for year, to keep healthy or as healthy as possible. Now awaiting a change of 'specialist' doctor because this one is not. He is just not a person who should be in such a position with vulnerable people who need a caring approach.
Just a quick slant on the anti depressant question of whether to take or not take......we all feel I am sure that to do so is 'giving in' and not the way forward.My excellent and caring two G Ps in our rural practise who give patients all the time they need both say that compared to the 'poison drugs'we take ,an anti depressant is absolutely 'nothing'....and if it helps to manage life then use it,sensibly obviously,not to be ashamed of needing its help , Best to all ,'keep smiling'!!!Sally
Hi Mary sorry to hear about how you are feeling. I suffered with depression a few years ago and medication really helped. I was able to come off it after a few months. I was also advised by GP to exercise every day. I go walking a lot and it really helped and still does. Have you been offered any medication for the thyroid problem? I hope you start to fel better soon, take care. Angela
I'm sure you know, but just in case not, depression is a serious side effect of Pegasys and some people have to stop taking it because of this. It's well documented. Best wishes, hope you find relief soon, Frances.
Sorry to hear you are dealing with these feelings. I have found doing something you love each day, and exercise, even gentle walking can help. Good sleep also very important.
Might want to consider having your vitamin d checked, as low levels can affect mood.
It's definitely not good to feel so low. It makes 'usual' symptoms of an MPN 100% worse. I know only too well as I've been feeling exactly the same for many months. I went to see my GP last month, and explained the way I have been feeling.
It took a few family members and friends telling me I wasn't myself...(even though I knew it myself) to make the appointment, but now I'm so relieved I did.
Just briefly talking to my GP helped and I'm now awaiting a mental health assessment and a course of CBT (Cognitive Behavioural Therapy) I definitely didn't want to take any form of medication so when offered meds I declined.
For that reason alone CBT is the best way forward for me as I've heard such good things about it. Karina.
Both the disease for me and the Pegasys messes with my emotions. I am Calr Type 2 +ve.
Cod liver oil capsules sort it out for me very quickly. However speak to your haematologist as it also affects blood coagulation. There is an academic study on cod liver oil and interferon for depression available in the literature if your haem is sceptical.
Hi Mary I am so sorry to hear that you are feeling so down and fed up, but as you can see, you are not alone in having these feelings, we all go through it at some stage, but just remember that because of that we all understand how you are feeling, and we are here for you, we just wish we could be nearer so that we could sit and have a cup of tea and a hug with you. Go and see your doctor and ask for something to help, there is no point in suffering. And in the meantime we are all sending you love and hugs. Maz
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