PV fatigue

[CherokeeBlue]

My first time posting. I’m seeking advice, tips and help understanding my symptoms. I have PV +Jak2. I have just started Pegasys interferon after failed treatments of phlebotomies and Hydroxyurea. My fatigue since diagnosis and treatments starting 2021 is all consuming. I don’t know how to deal or cope with the tiredness, lack of energy, and overall feeling unwell. I would love any tips, advice and help.

[hunter5582]

There are some good tips available about managing fatigue on MPN Voice and other sites. As you likely know, fatigue is the most common MPN constitutional symptom. However, given what you describe in terms of timing, I would be suspicious of fatigue as a treatment adverse effect. Asthenia and dyspnea are common hydroxyurea adverse effects. Fatigue is also a potential adverse effect of phlebotomy induced iron deficiency (without anemia). I never experienced fatigue as a MPN symptom until I became very rion deficient from the phlebotomies. My energy levels restored when I started on treatment with interferons and my iron levels came back up.

Here are some resources you may find helpful.

mpnvoice.org.uk/living-with...

powerfulpatients.org/2023/1...

Wishing you all the best.

[CherokeeBlue in reply to hunter5582]

Thank you Hunter. My ferritin level was <5 about 6 weeks ago but has came up since the Peg. Maybe I need to give the medication more time to work for me? Thank you so much for the links.

[hunter5582 in reply to CherokeeBlue]

Iron is hard for the body absorb just from diet. It will take some time to restore iron levels. You can make a point to eat some iron rich foods if you wish. Note that heme iron is easier for the body to absorb and that there are foods other than red meat that are good sources of iron.

You are correct about giving the Pegasys time to work. Treating with the interferons is a marathon not a sprint.

All the best.

[CherokeeBlue in reply to hunter5582]

Thank you

[EPguy]

Since plb and Hu did not work you likely have not yet had blood counts in the normal range since your Dx. It's possible the PEG IFN will get you there and then you will feel at least some better.

What are your blood counts (HCT, WBC, PLT...)?

Take care on the dose of IFN, too high can by itself cause fatigue, as I experienced (and a lot more)

If you give the PEG enough time and it still is not working, Jakafi is a great option that can bring symptom relief for many pts. But firstly patience for the PEG to act is important.

[CherokeeBlue in reply to EPguy]

Thank you for the reply. Since the PEG, my blood counts have been in the normal range, they haven’t been normal since my Dx, so I know it’s helping me. I’m on the low dose of PEG. The fatigue and no energy is just bringing me so down. How long until this side effect subsides? Thank you so much for your advice.

[EPguy in reply to CherokeeBlue]

"How long until this side effect subsides? ": I had moderate fatigue and especially malaise, that "unwell" feeling you describe. It never got better while I was on IFN, I think my dose, while low, was too much.

Iron and thyroid as noted here would be something fixable, which would be helpful.

If all tests ok you could ask for checks of autoimmune conditions, most of these can add more fatigue, and while on IFN are best to be aware of.

Here is a list of what I got tested:

healthunlocked.com/mpnvoice...

[CherokeeBlue in reply to EPguy]

Thank you

[Mazcd Partner MPNVoice]

hi CherokeeBlue, welcome to our forum. I am so sorry to hear that you are experiencing fatigue, it is horrible when you feel like this. I can see that Hunter has given you the link to some information about fatigue and how to manage it, and I hope that this will help you. And hopefully you will start to feel better now that you have started Interferon. With best wishes, Maz

[CherokeeBlue in reply to Mazcd]

Thank you. I’m so glad I joined this forum. I felt like no one understood how I’m feeling. I’m hoping I just need to give the medication more time to work.

[ainslie]

one thing to consider is all the interferons can lower thyroid, its very common,worth getting a thyroid test, if low it is easy treatable, generally endocrinologists and GP’s tend not to treat thyroid unless TSH is over 5, thyroid experts will like to see TSH 1-2 max, similarly Free T three is the main one to follow, it should we in upper quartile. Most with MPN suffer fatigue in varying degrees, most experts recommend exercise, I find it helps a lot. It may be that Pegasys is the cause of the fatigue, if all else fails, there is Ruxolitinib for PV which is easily tolerated and many report less fatigue.

[CherokeeBlue in reply to ainslie]

Thank you. I see my dr on Friday and will mention a thyroid test. I know I haven’t had one in a year probably. I didn’t know there were more treatments other than what I have been on. I have read that exercise helps but I struggle just to get myself in the shower. I will try and thank you so much for your advice.

[Bariton]

Every patient is different CherokeeBlue. I have a PV JAK2 that was diagnosed in 1987. I suffered the most in the years before diagnoses but my HCT level was 68% at the time. I had a series of phlebotomies to start with (+ aspirine and allopurinol) that stabilised at one phlebotomy every 6 weeks. During 25 years I continued that treatment. Irons levels were far below the normal minimum, but that did not bother me. There was no internet at the time and it took me about a year to cope with the situation psychologically. Uncertainty about my future was very present. Then I picked up sporting again and felt ok with it. I had the idea that a good physical condition helped me to cope with my disease. Without my PV, my life probably would have been different, but overall the quality of life was reasonable. At the age of 60, I started Hydrea (2 X 500 mg per day), but I had to reduce that dose after a few years and I have phlebotomies again. In Belgium, Pegasys or Besremi are not reimbursed and I never found a good explanation why. I think this is a disease we can learn to live with. Learn to recognise the symptoms, find out what works well for you and do not give up. I hope you find your solution and I wish you all the best.

[CherokeeBlue in reply to Bariton]

Thank you so much

[marlenablue]

Hi there! So sorry you are experiencing overwhelming fatigue and that horrible unwell feeling. Perhaps stating the obvious, but make sure you are taking a multivitamin and eating lots of fruit and veg. I hope your malaise resolves after more time on the interferon.

[CherokeeBlue in reply to marlenablue]

Thank you so much

[william-Indo]

Hi Cherokee,

Add Liver, clamp to your diet.Exercise

Vitamin B12 will be advantages.

Maybe the fatigue couldn't totally resolve, but it will very helpful.

Cheers

[CherokeeBlue in reply to william-Indo]

Thank you for the tips. I appreciate any and all advice

[Wendrew]

you’re not going to like this but there’s not a whole lot to be done as long as your numbers look good. I’ve come to accept that I’m not lazy or any of those negatives I call myself. I’ve accepted that I have to rest in between activities. That there’s not too much in my life that can’t be delegated, rescheduled, postponed, etc to another time. But you’re much younger and this might not apply at all. Life is full of major changes. This is but another

[CherokeeBlue in reply to Wendrew]

Thank you. I’m beginning to see I’m going to have to accept this fatigue and stop putting myself down because I can’t do all I use to. This community has already helped me so much in just a few days. I’m grateful

[MPNJoe]

i have PV and i am very fatigued also all the time. i have been on hydroxyurea for a while now but i do have very low iron so that’s also causing fatigue

[CherokeeBlue in reply to MPNJoe]

It’s frustrating and I’m struggling as well. I think it’s possible my iron and vitamin D could be low. Looks as though there’s not a lot to be done about our fatigue. My hope is that we will feel a little better soon.