Do you recognise these symptoms

[Bear111]

I have recently found this forum and it is wonderful to hear back from others who have ET and their experiences. I have symptoms periodically that I am not sure are linked and wonder if anyone else with ET recognise them, since starting Hydroxycarbamide and Warfarin over 2 years ago I get extremely itchy skin, I have night sweats, when I first get up in the morning my ankles/feet feel stiff but improve when I start moving around, I experience ocular migraines which started in 2012 and wonder if they may be linked, occasionally I feel wiped out. Do these sound familiar to others? Many thanks for your time.

[EssThro]

Hello, Bear.

At the time of my ET diagnosis I had erythromelalgia, mild itching, night sweats, mental fog, and fatigue. I was put on low-dose aspirin twice a day, along with a low-dose of Pegasys. All were improved, but the fog and fatigue seem to be returning recently.

Good luck to you!

[Bear111 in reply to EssThro]

Thank you very much for taking the time to reply, I wish I had found this forum earlier I may not be so anxious, thank you again.

[lizzziep]

I had the itching and night sweats, still sometimes get the sweats, I haven’t had the migraines but I think some people do get them. I also get the brain fog and fatigue. Isn’t ET fun!

[Bear111 in reply to lizzziep]

Hi Lizzie, the best fun lol, thank you so much for taking the time to reply and helping me feel less isolated.

[ciye]

Brain fog and fatigue which has got worse, some days too exhausted to do anything. The night sweats are awful.

[redumbrella]

The itching and night sweats are more likely linked to your ET rather than the meds. Fatigue and Brain fog also come with the condition.I have PV and am also on Hydroxy and suffer from the latter two but not thankfully the former.

Have a chat with your Haemo re the itching, maybe he/she could recommend something to help you.

Kind regards

Garry

[Bear111 in reply to redumbrella]

Thank you so much for your reply, my haematologist doesn’t seem to think the itching is linked, I am trying to find an MPN specialist locally to me who I can see.

[Barbiebreath in reply to Bear111]

Your hematologist doesn’t think the itching is related…. 🤦‍♀️ I’m kinda new here but seems almost everyone experiences some itching.

[Bear111 in reply to Barbiebreath]

Thank you, exactly, I really do need to find an MPN specialist, thank you for your reply.

[redumbrella in reply to Bear111]

Seeing an MPN Specialist is a good idea if you can find one. After 17 years I am seeing one later this month just to review my case and to see if anything more can be done going forward.

[Bear111 in reply to redumbrella]

Thank you for your reply, I really appreciate it. Will this be the first time you have seen an MPN specialist? Have you been under a normal haematologist like myself?

[Barbiebreath in reply to redumbrella]

I have my first appointment with a MPN specialist on May 16. I have all the feelings. Happy, sad, hopeful, scared….. I know it’s a positive direction though so feeling good about that.

[redumbrella in reply to Barbiebreath]

Likewise my own appointment with is on the 5th of June and in a strange way looking forward to it as I am hoping that she can put my mind to rest on some things. I understand your being sad and scared but please try to relax about it (I know easier said than done) but in my experience over the17 years of my own journey positivity is key.

Just remember that in seeing an MPN Specialist you will have a huge advantage over a lot of those who share our MPN journey as these MPN Specialists are rare enough.

The best of luck on the 16th of May and try to keep positive.

Garry

[Bear111 in reply to Barbiebreath]

I am sure that seeing an actual specialist in MPN’s can only be a positive, good luck.

[Devilgirl]

I had ocular migraines & itching until I started taking Aspirin which helped these for me. I still get night sweats every evening & bouts of brain fog & fatigue. I have ET & hsve now been on Aspirin 3yrs & hydroxycarbamide 2½yrs.

[Bear111 in reply to Devilgirl]

Thank you so much for your response, I am realising after posting that I am not alone and that has helped me feel less isolated, thank you.

[GarciaB]

I suffered all those symptoms and others. It took me a while to connect the dots and realize they were all part of this disease and it’s treatment

[Bear111 in reply to GarciaB]

Thank you for your reply, I really appreciate helping me realise it’s not just me.

[falconered53]

Hello Bear My MPN is PV, not ET, but I think symptoms overlap. You mention stiff feet and ankles upon getting up. This has been continuous for me along with the numbness, tingling and pins and needles in my feet frequently throughout the day. Although hydrea and aspirin have helped with other symptoms, this one remains . Doctors seem perplexed by it, although some suggest it's erythromelalgia. I just live with it, but it;s very difficult.

Best of luck with your finding an MPN specialist.

[Bear111 in reply to falconered53]

Thank you for replying to my post, finding this forum is the first time I have spoken to others with MPNs and as much as I wish no one else had them it is comforting to know that my symptoms are real and I am not alone.

[hunter5582]

100% of the symptoms you report are MPN related. You will find other on the forum with some or all of the above. It sounds like the itchy skin, common with MPNs, may actually be a medication reaction based on the timing. HU and Warfarin both cause skin reactions. Rash with HU and pruritis with Warfarin are listed as common adverse effects. I would definitely let your care team know about the adverse effects ASAP.

MPNs are at the core inflammatory disorders. Some of what you report is linked to inflammation. Fortunately there are interventions that will help with this. I have used curcumin to good effect for this issue.

Ocular migraines (usually experienced in just one eye) are different than visual migraines (experienced in both eyes). The former are based in the retina. The latter are based in the brain. Both are microvascular symptoms known to be associated with MPNs. They can, of course, occur independently of the MPN. These can be treated. I use a CGRP Inhibitor to deal with acephalgic visual migraines.

allaboutvision.com/conditio...

webmd.com/migraines-headach...

Hope you find solutions to the symptoms ASAP.

[Bear111 in reply to hunter5582]

Thank you Hunter for your great knowledge and thank you for the links, it looks as though mine are visual migraine as they are in both eyes and usually triggered by bright white light, thank you again.

[hunter5582 in reply to Bear111]

It is an important distinction. It also helps in talking to the docs to understand the difference in the two types of migraines. Defiantly talk to a MPN Specialist, but you may need to see a neurologist/migraine specialist about the visual migraines. I hade great success with a CGRP inhibitor. Not all docs know about trying these meds.

Hope you get it sorted ASAP,

[Bear111 in reply to hunter5582]

Thank you so much.

[Mazcd Partner MPNVoice]

Hi Bear111, sorry that you are experiencing these symptoms, not very nice for you, as you can see from the replies you have had, many people with MPNs do experience them in varying degrees of severity. They information on our website has them listed:mpnvoice.org.uk/about-mpns/...

It might help you to speak to your haematology nurse specialist about these symptoms for advice on how to manage them. Best wishes, Maz

[Bear111 in reply to Mazcd]

Hi Maz, thank you for coming back to me, it’s horrible that others suffer with these symptoms but comforting to know I am not alone.