Hello, I'm so thankful to have this site to turn to. I've been on HX for over a year after being diagnosed with ET. I've just had my 4 month phone consult with my Hematologist and my Platelets are still higher than they would like, {596} so she wants to increase HX to 13 tabs a week {currently on 12}.
I have been experiencing extreme itching specifically eyes, ears, nose and my head plus I've noticed changes in my skin. Red Blotchiness on my face and roughness on different parts of my body. There are other symptoms that have developed since starting HX but these are the ones that are the most bothersome atm. Anyone else experiencing this after starting HX? Whenever I've brought up different symptoms to her she just dismisses them as having nothing to do with HX. My GP doesn't seem to know much about Blood Cancers (understandably) and my Hematologist just seems be trying to get through her phone consultations as quickly as possible which just seems inadequate when they are 4 months apart. So feeling a bit disappointed.
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Elleuno
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I too have ET and take 14 hydroxy a week. My skin is very dry and blotchy and sometimes I get a rash and itching
I use aqua max cream to shower with and also as a moisturiser. It’s not expensive and helps relieve the blotching a bit
I sympathise about your heamotologist as I have 3 monthly phone calls and she is not very helpful with questions I ask her. She seems very uninterested so I too feel disappointed
Thanks for your reply Pippa, it does help to hear that others suffer with this as this is a very unfamiliar topic for most. I will give the products you mentioned a try, desperately need some relief for this!
While some people can tolerate HU, but everyone can. I am HU intolerant. I had adverse effects even at very low doses. The good news is that the adverse effects will usually resolve when you decrease or discontinue the HU. There other options if you cannot tolerate HU, some of which are much less toxic. It would be advisable to consult with a MPN Specialist rather than a regular hematologist. Here is a list mpnforum.com/list-hem./ .
I would also note that assertive patients receive higher quality care. Passive patients do not. You often have to be a strong advocate to get what you need, This includes firing doctors who do not provide the quality of care you deserve. Your doctor works for you, not the other way around. If your sense is that your doc is just blowing you off and providing inadequate care, replace the doc. That is your right and your responsibility.
Thanks Hunter, feeling very frustrated with my 'care' atm. Having bloods done at local surgery and found out from my Hematologist that they didn't get all they need, however she's just going to wait till next 4 month check??? I've also recently been diagnosed with Diabetes 2 and had the bloods for that done on the same day.......these also were inadequate however the diabetic nurse is having them redone for me next week. I have mostly taken care of my own health most of my life as I just don't have much faith in the health system. its just so disjointed and no-one seems to check your notes or listen to you. I would normally go to docs only if I had no other option. so I agree, its the 'squeaky wheel that gets the grease'! Sometimes though, they just dismiss you as being a nuisance. I live in a remote part of the country so not a lot of options for changing docs, but I will give it a go. Thanks for the input. All the best, Elaine
The option for tele-video consultations has really opened up of late. If you can find a better local hemo-doc to follow you, MPN expert consultation does not have to involve travel all of the time. This approach works well for me,
I have ET and currently take 21 HU a week ( 3 a day). Have had many side effetcs including tia symptoms and all dismissed by consultant as well so I feel your pain!! X
Having your valid concerns dismissed in an unacceptable standard of care. Providers who behave this way should be disciplined and/or replaced. Low quality care care only continue when it is tolerated.
Hi Elleuno. I have ET and am on 1 Hydroxy 500 mg a day and I most definitely suffer with skin problems . Red flaky itchy places mostly on legs but other places all over body which itch like mad with nothing to show on skin. I’ve also developed swollen left leg mostly foot and ankle. Haemo sent me for scan but thankfully blood vessels veins were ok so don’t know what causing it. I think it could be something to do with Hydroxy. She’s going to refer me to person dealing with Lymphoedema but leaving it till safe to visit hospital. I do hope you get some satisfaction from your Haematologist and GP soon. It’s awful when you feel you’re being brushed aside. Regards Fran
How are your platelet levels currently? Swollen legs, itching skin, etc were among the symptoms I had leading up to my ET diagnosis which seem to have improved somewhat as my platelet count has come down (it is currently in normal range with my Hydroxycarbamide dose at 9 x 500mg capsules weekly). The problem is that I now have a wound on the outer lower left leg that is not healing. Two apparently similar wounds, both starting as small red patches, developed in 2019 (before I was taking any chemotherapy) - they healed themselves, albeit over many months. I suspect that the failure of the latest wound to heal is somehow related to the chemotherapy ...
My haematologist has referred me for a second dermatology appointment, in a few days. Unfortunately it looks as though I will be seeing a different doctor from the one who saw me early in 2020, so I wonder how easy it will be for this new person to assess the situation. The first dermatologist related my leg symptoms to lymphoedema, which could well be hereditary, as my mother had a tendency to swollen legs for decades, plus two phases of ulcers late in life ... but my vascular ultrasound leg scans apparently showed no "surgically significant" venous insufficiency (I'm not sure what that implies).
From my own experience so far and from comments on this forum by other members, I get the impression that there is a need for improved understanding of the swollen feet and legs, itchy skin, ulcers, etc suffered by MPNers. How much are they due to:
1) lymphoedema unrelated to the MPN;
2) lymphoedema that may be related to or seriously exacerbated by the MPN;
3) other aspects of the MPN (inflammation, etc);
4) side-effects of MPN medications, especially Hydroxycarbamide?
Perhaps the proportions of these influences vary from patient to patient, making understanding and helpful treatment even harder to find ...
Good luck to all MPNers who are struggling with these issues!
My platelets are around the 600 mark, give or take. I’m on Hydroxycarbonide x13 pw. Initially before diagnoses they were @ 1200. So they have come down. The main symptoms which are so debilitating is feeling very tired most of the time and having very little energy to do much. I’m doing my best to keep as active as I can but this can be literally exhausting. I follow a good diet and take supplements which all are to do with increasing energy levels. I’ve recently emailed my Haematologist asking for a change in meds. Hoping to move onto something else. Thanks for your input. This site is invaluable and just being ‘heard’ is a comfort.
My platelets have been stable at around 273 , last blood test on 1st March and other blood results normal. I agree these issues should be looked into .
Feel for you regards symptoms and the Haematologist I have exactly the same with my Consultant so frustrating when you are worried about your symptoms and get no answers!
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