Hi all, it's been a while since I've posted here last time.
I had a difficult time, it probably all started with my missed miscarriage in 9th week of pregnancy last November. Doctors don't know if it was due to my PV or something else. Since then, my mental state has started to deteriorate. I have been treated for depressive disorder since I was a teenager. I've always managed it somehow with antidepressants or sometimes even without them. But two months ago there was a big change and I started to suffer from panic attacks and severe anxiety which was something new to me. It is hard to describe but I felt like it wasn't me anymore. My hematologist immediately discontinued Pegasys and I started to take antidepressants again (that had been discontinued due to pregnancy before). I feel better now but still not 100% ok. I'm still thinking about what caused such a deterioration in my mental health. I don't know if anyone has a similar experience here. Can it all be caused by Pegasys? Because I have never felt like this before. I used to take 90µg / weekly for 10 months and then 45µg / weekly for the last month.
I am currently only on aspirin and still off from Pegasys. My blood counts are fortunately ok so far. I am also taking mentioned antidepressants (venlafaxine and mirtazapine) every day. I also read that NAC can be helpful against inflammation and also as an adjunctive treatment with antidepressants, I am taking 1200mg of NAC daily (hope it is the right dosage). Plus curcumin.
I do not know if my hematologist will decide to start Pegasys again. I have an appointment next week.
I am just trying to do my best to feel good and happy again.
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DariBee
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I'm so sorry you're feeling so awful; I'm too new to this whole MPN thing to know whether your medication is responsible for your mental health or not. But I did want to say, don't feel you need try to feel cheerful any more than you would need to try to feel better if you were throwing up the whole time! When you see your haematologist, tell them exactly how you feel and ask whether it is a side-effect of the medication, or your condition, or something else. And be gentle with yourself in the meantime.
Seconding the other reply, please be gentle with yourself. Interferon treatment can exacerbate depressive disorders, but it sounds like you also had a lot going on. It takes some time for certain psychiatric meds to leave the system fully. We're living in a high-stress pandemic. And I'm so, so sorry for your loss. That in and of itself can be emotionally damaging, not to mention the roller coaster of hormonal changes that accompanied it.
I'm glad to hear that your counts are still in a good range and that you're starting to feel a bit better. Maybe, based on that, your hematologist will restart you; maybe they decide to wait a little longer until you feel more confidently stable. At least it sounds like you have some wiggle room because your bloodwork is okay.
I know it can be difficult to find the right psych med (hello from Team Anxiety over here), but perhaps your psychiatrist can help you find a medication that is okay to take during pregnancy, should you decide to try again. Have you considered doing some talk therapy too? I'm not sure what your support structure is like, but sometimes it's helpful to have a third party who isn't involved in your daily life as a sounding board.
Hi lynxfluff. Yes you are right, there was a lot going on last few months so hard to say what was the cause. Actually I do have a psychotherapy, I had a first meeting this week so hope it will help too. Thank you for your supportive and hopeful words!
Hi DariBee
Interferons are known to cause depression or anxiety particularly in those who have a history or condition. I have a generalized anxiety disorder triggered several years ago by my brothers sudden death. Before l started PEG and on the suggestion of my haemotologist l had a discussion with a Psychiatrist/therapist, to work out strategies and support systems. It does get easier with time. I had mood days usually half way between injections. Now l feel my system is used to it. I think providing your haematologist sees no contraindications you should be able to combine the Peg with anti depressants. I did for a while and it definitely helped and didn’t affect my blood results in any negative way.
Hi Dovme, sorry to hear about your brother. It must have been difficult for you. We are all different, somebody gets eg diabetes with all the stress around, somebody gets anxiety disorder... When I was on PEG and also taking antidepressants at the same time I felt quite ok, probably I shouldn't stop anti depressants even during my pregnancy. I was confused because my psychiatrist said big NO to any anti depressants during pregnancy and my hematologist said the opposite later - that antidepressants are the way for me to get successfully through my pregnancy and delivery. Problem is that they don't communicate to each other.
I'll see what my hematologist says about next steps next week.
I agree with some others who responded to you. Please don't even consider going back on Pegasys as it's known to make depression and anxiety worse. In fact, my hematologist won't even start anyone on Peg if they have had any history of depression or anxiety. It's one of the first questions asked. I'm on Besremi and don't know if it has the same effect as Peg on mental health. Might be worth asking your hematologist.
Hi Orangeboykitty..Maybe Besremi has less side effects but I think it still not approved in our country - Slovakia. I'll definitely ask my hematologist. Thank you.
hello DariBee, I am so very sorry to hear about your miscarriage, very sad for you. You need to have a very frank discussion with your haematologist about what medication is best for you going forward. I am glad to hear that your counts are ok and that you are feeling better. Take care and very best wishes, Maz x
Sorry to hear you are having such a rough go of it. You have so much going on it is not a surprise that depression and anxiety could be an issue. It is nearly impossible to sort out what is causing what at this point. Sometimes all we can do is deal with what we have going on the best that we can. The good news is that it can be dealt with and you can get yourself back into a better place.
I would be sure to review your treatment options with a MPN Specialist. There are a number of different ways to manage PV. Many hematologists do not have the KSAs to provide optimal care for MPNs, which is why seeing a MPN Specialist is so important.
Regarding going back on Pegasys, that is your decision. Your doctor can advise and recommend, but only you can decide. Suggest reviewing all of your treatment options then making an informed choice about what is best for you based on your treatment goals, risk tolerance, and preferences.
Glad to hear you have found some effective anti-inflammatory treatment. This is very important in managing PV. I am also using curcumin, but am using L-Glutathione instead of NAC.
Regarding the depression and anxiety, we all have to find our own coping strategies. Here is my list.
1. Support from my family, friends, and faith community.
2. This forum (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.
Hi Hunter, thank you for your supportive answer. I have changed my hematologist to MPN specialist last year (in November '21). I think it was a good decision, she immediately put me on lower dose of Pegasys considering my stabilized blood counts and also history of depression. I went from 90µg / weekly to 45µg / weekly and then 45µg/fortnightly. I am planning to ask my hematologist if there is a possibility to get to Besremi somehow in Slovakia and also about some other treatment options.I really like your list of coping strategies. I will have to find my own. With all this happening my body is probably telling me to change something. ...and about NAC and L-Glutathione. Do you think it is better to take directly L-Glutathione instead of NAC?
The research that is underway by Dr. Fleischman and others has focused on NAC. It was my Integrated Medicine doctor who suggested that I try L-Glutathione instead since that is what NAC is increasing in the body. I expect either one would have a similar benefit. The thing that has helped the inflammation the most for me is curcumin. That has been very effective.
Hope you get it all sorted out as soon as possible,
I’m so sorry for your loss. It is natural to feel sad after such a traumatic experience. Hunter gave some good strategies but I also think that everyone processes grief at their own pace and there is no timetable for that. That being said, I’m glad you’re getting some therapy and seeking ways to climb out of your depression. I wish you all the best.
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