struggling with ET symptoms after covid

[FashionLover]

Hi all. I was diagnosed with JAK2 positive ET 2 years ago and up until early this week I was injecting 180mg of interferon weekly. My platelets have hovered around the 800 mark for some time so during an appointment with an MPN specialist they suggested changing my medication to Anegralide. Before mid March my symptoms were mostly manageable but a week after testing positive for covid on 18 march I noticed a significant increase in my ET symptoms such as migraines with aura/visual disturbances, dizziness, pins and needles, low energy and fatigue along with a new feature to my migraines which involve tingling inside my mouth and tongue for a minute or so. (At the most I got this twice a day but more often than not it’s every 2 days and sometimes less frequently) I had this checked in A&E but the doctor put it down to migraines and covid.

I’ve been really struggling with my symptoms and can no longer exercise, have had to take some time off sick at work and really not enjoying life at the moment. The weird thing is I felt quite a bit better for about 4 days from last Friday then on Monday I started going downhill again. Has anyone else experienced a flare up of symptoms like this, especially after covid? If so, how long did it last?

I started taking anagralide on Thursday evening and yesterday morning I felt sick. Last night I couldn’t sleep because I had a strange ache/pain in my arm, shoulder and back which meant it hurt to sleep on my side. Today I feel like I’ve pulled a muscle in my neck. Im not sure whether this is caused by the medication or something else.I have a follow up with my local haematology dept in 2 weeks but at my last appointment last week they just said it could be the high platelets causing the symptoms and to try anegralide to see if it helps. Im really worried this is going to be my life now and I’ll never get back to where I was. Any advice would be much appreciated

[Hopetohelp]

So sorry to hear all that you are going through. I had very mild case of covid for first time recently when itching virtually disappeared strangely but has come back with avengeance afterwards. Also lethargic. Thought I had got away with it lightly and even posted the good news but now feeling totally out of sorts. No major symptoms like yourself but things definitely seem to have changed in some way. Were you on Pegasys? And how long for? I hope things improve for you soon

[FashionLover in reply to Hopetohelp]

hi Hopetohelp, thank you for your reply. I hope things go back to normal for you soon. I was on pegasys for two years. Thank you, had a bad few days but I’m hoping to see a light at the end of the tunnel eventually

[Wyebird]

hi, I’m lucky I had mild covid symptoms. My cousin ( not MPN patient) fully vaccinated has been extremely ill with covid and weeks later is now starting to get out and about. I do hope you get better soon but I think it might be early days.maybe you started to do too much too soon.

Sending hugs

[FashionLover in reply to Wyebird]

Hi Wyebird. Thank you, you could be right. I really hope it improves in time

[Windy51]

hi I have started Anagrelide been on for four months so far so good I use to take Hydrea I get a lot of those systems I was feeling really flat I found drinking a lot of water helped me it still does and also I take medicinal Cannabis and I feel a lot better I still have my aches and pains but I don’t have the flat depression feeling I hope this helps hope things get better for you 🌻

[FashionLover in reply to Windy51]

hi Windy51, thank you. I’ve had bouts of feeling nauseous so probably not getting as much water in as I should