Im a 37 year old female dg. with ET JAK2 . My illness is showing symptoms of masked PV and we are now starting pegasys interferon, as i have had severe depression all my life and still as moderate im worried about the possibility of some risks in mental and other issues. I have always had very thin hair and due to mpn-and iron deficiency its so thin i cant wear extensions. My thrombocytes are about 900 and i have suffered erythromelalgia for many years. I am asking your advise on what kind of starting dose have you started and remained? Because of my history with depression and hairloss i am wondering about this. Im thinking about suggesting 45mcg once in 2 weeks.
All of your help is much appreciated.🤎
Ninete
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Ninete
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Ninete - it seems that the best practice is to start low and slow - if needed and tolerated can always increase dose. I started too high (180 every two weeks) and had to stop for about 6 weeks/2 months while liver calmed down and started on half the dose (90mcg every two weeks) which has worked well for me (recent blood work all within normal limits) - I have been fortunate in that I have not had any measurable side effects - definitely stay in contact with your care team and raise your hand if you notice any changes (especially mood/mental) - hopefully things will work out ok but the good news is that today there are options for treatment.
I started on the standard recommended dose of Pegasys for MPNs (I have PV), 45mcg weekly. I would have had to increase the dose to control the erythrocytosis, but switched to Besremi instead. I would note that the 45mcg dose did a good job controlling the thrombocytosis in my case.
When I experienced erythromelalgia, I found that the right dose of aspirin eliminated the symptom. The right dose is different for each of us. Some find that they do better on two doses/day of low-dose aspirin. That would be something to discuss with a MPN Specialist.
Given the history of depression, you are wise to be cautious with Pegasys; however, just because something can happen does not mean that it will happen. Close monitoring for exacerbation of depression will need to be part of the plan.
Suggest that you review your treatment goals with a MPN Specialist. There is no evidence to support lowering PLT < 450 for ET. Some docs use 600 as the target while others focus more on the delta (degree of change). There is definitely evidence to support HCT < 45% (or 42% for females) to reduce risk of thrombosis in treating PV. It sounds like there are some issues with other symptom control. It is important to do the risk/benefit analysis when choosing the medication and the dose. What risks are you willing to take to achieve the benefits you are seeking? You can make the decision in collaboration with your MPN care team.
You could start at 22.5mcg a week and build up, some docs suggest starting a antidepresant meds before starting Peg if one has prior issues with depression
I have ET (no PV) and when I started on Peg I started at 45mcg every week. It was quite quickly upped and I ended up on 180mcg weekly (this has now been reduced to 135mcg).
My experience of Peg has not been too bad, I certainly haven't experienced hair thinning (I don't know if that puts your mind at ease at all)
Everyone's body is different, so it is hard to say which of the symptoms you will experience, but certainly starting low dose seems a good idea. Close monitoring from your care team is a must.
hi Ninete, I hope that the replies have helped you, it is very daunting when you have to start medication and are concerned about the side effects, it is definitely worth discussing your concerns with your haematologist and to discuss the dose and frequency of taking Peg Interferon.
You might be interested in the blogs we have on our website written by Alice a young ET patient, she talks to patients and healthcare professionals on many topics related to having a MPN mpnvoice.org.uk/about-us/yo...
You might also be interested in the MPN Voice Young Patient Network, for people aged 40 and under with a MPN, the aim of the network is to bring together and support young people with MPNs, to give a welcoming space where young patients can meet and connect with likeminded others, and receive information tailored to young patient experiences and challenges. They have a dedicated Facebook group, which has many members from across the world, and is very supportive and active facebook.com/groups/mpnvoic...
thank you for your time and sharing this valuable information as this network for younger patients. I just send a request to join and be part of this community.🤎
Hi NineteI have just started peg alpha for last 6 weeks after ET Jak2 diagnosis and been on 45mcg per week. Also have blood tests the day before I take it to monitor progress and I also have high blood pressure. Also had a bone marrow sample taken.
Last week the blood test showed my liver is being affected and was told to stop the interferon. Subsequent CT scan on liver showed no abnormalities. So will be interesting what next week's blood test shows. The platelets are down 200 or so to 600, this has reversed the increase my GP noticed following a regular chest check last October.
So maybe I will be advised to take interferon every two weeks.
Whatever you will be advised to take, the testing not only keeps you updated but also keeps you in touch with your care team and more importantly you can talk to them.
Started on 90 then gradually went down to 45 which I take now.
Feel a bit miserable for a day or so after taking it but that’s just because of the mild flu like symptoms.
I feel the same “miserable “ feeling that most of us have if we catch a cold.
For me there’s been no real depression or mood swings. That said I’ve been lucky enough to enjoy good mental health throughout my life so if you’re concerned then make sure you keep in close contact with your care team. Hopefully you’ll be ok👍
Like Hunter said, the standard recommended dose of Pegasys for MPNs is 45mcg weekly. Patient physical reactions vary greatly from "no noticeable effects" to "alot of unpleasantness" that causes them to lower the second dose to 22-30 mcg.
Likewise patient mental reactions vary from exacerbating a pre-existing depression to the elation that comes from realizing they might now have a normal life expectancy:
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