Hi all. I'm a newly diagnosed thrombocytosis patient just beginning my quest for info. I've had a terrible itch with tiny blisterlike bumps which eventually become tiny craters just about anywhere on my body. After seeking help for 2 years with various doctors, one finally ordered a blood test and here I am. However, itch is still occurring. Taking 1000 hydroxyurea daily and platelet count now in range. I was surprised with diagnosis as I've never felt better nor more energetic. No symptoms yet and no reaction to meds. However, I do want to know what to expect down the road. Also would appreciate any suggestions for itching. I have a cabinet full of various creams, lotions, ointments and powders, both Oct and rx. Any info out there appreciated much.
New to thrombocytosis..: Hi all. I'm a newly... - MPN Voice
New to thrombocytosis..
Hi Mollymag
So glad that you've managed to get a diagnosis & that treatment is going well.
I have been diagnosed with ET, but years prior, I suddenly started with very itchy skin on my legs, especially at night in bed. I then started with little itchy blisters on my hands. I saw a dermatologist who diagnosed my hand irritation as a form of eczema - Pompholyx (in Greek translates to little blister). I had a skin allergy test which found that I reacted to touching certain products. I now wear cotton gloves when using furniture polish & washing up gloves to protect from washing up liquid. I can manage it really well now & have very little flares. I use E45 as a moisturiser & spray perfume on my clothing & not my skin. I resolved the itching legs by discovering an epilator & not using a razor - I couldn't believe the difference.
Good luck with finding what unsettles your skin & then you can try alternatives.
Take care
Beartime c
Thanks. My itching/blistering can appear anywhere. I've seen dermatologists many times and other specialists depending on the location of the problems. At this early stage this is the only truly disconcerting issue I have. My doctor ordered some additional blood tests next month in an effort to pin down the itching issue. However, if this is the worst thing it's one I could learn to live with; I know that's overly optimistic, but it's what I do.
Hi there, not saying it was the same but anything is worth a try if it's not dangerous or expensive.
When I was in my very early teens I was covered in these blistered bumps and the doctor said to cut out sugar! Yes I know, odd. However I did, it was tough at first because sugar is kind of addictive! Once you are used to a reduction of the old sweet stuff everything tastes so much cleaner and more pure. I really can not drink tea or coffee with even a few accidental grains in it😝
However I have never had them since! Saves money aswell, approximately one bag of granulated a year for visitors and caster for baking.
It might have nothing to do with it but there is nothing to lose either. 🤗
Appreciate your comments, but sugar is not my thing..prefer salty. Have been on weight watchers for over a year and have had sugar on rare occasions by way of a small dessert.
Welcome to this site. So glad you are feeling well. I do hoe the dose of meds you are on will continue to suffice. Lots of people here will help you. They are so supportive. Good luck with finding relief for the itching.
Morning
I was diagnosed with ET about 6 years ago. I have similar skin irritation which could (?) be part of the comorbid diagnosis of systemic mastocytosis? I take a strong anti histamine (Fexofenadine) which is normally fine, although this very hot, humid weather is causing a lot of itching.
If you have a BMB, you should ask about this.
Stephen
Something new to google. I've mentioned to many doctors over the past 2 years that I thought this was something systemic, to no avail. Very fortunately I am an 'old person' and that is most definitely something that decreases interest/concern by many. I'm still very bright, energetic, and gloriously happy at this time in my life, so it's just not acceptable to be treated like I've got one foot in.....Persistence, persistence, persistence.
Hi Mollymag2 and welcome to the forum.
I have put a link to the MPN Voice intro for those newly diagnosed. This site tends to be 'the bible' for forum members and contains reliable and clinically verified information
Hope this helps
John
HI Mollymag2
i suffered from a terrible itch i have et Jak2+ i told my consultant about my itch and he prescribed me a tablet called Cetrizine it is like an antihistamine and i found that it really worked i never looked back
stay save
Scottish Terrier
Thank you - I thought I'd tried everything, but this site has many new recommendations which I will research. The itching is weird. I get a bunch of little flareups all over, take care of them best I can, and when they are just about healed, it starts all over again. I live in an extremely dry climate and use lotions daily (wherever I can reach!).
Hi Mollymag2,
I also have ET, diagnosed at the beginning of the year. I don't have itchiness related to this (at least this is what I think) but I have struggled with itchy skin for the last 25 years.
I have seen numerous dermatologists and had lots of tests done. Eventually I was diagnosed with atopic dermatitis and the last dermatologist I've seen recommended me A-Derma Exomega Control cream, a natural cream made of Rhealba Oat.
You can find the whole range here: aderma.fr/fr-en/ranges/exom...
They have very good reviews and can be used on the whole body.
I have used several of their products for aproximately 20 years now and they are amazing. I always use the lotion after a shower and the cream when the itchiness/dermatitis flare up. I usually have bad flare ups if I go through a stressful period or if I run. I develop a rash and it is both itchy and painful in the same time. When this happens I also take Fexofenadine (Telfast) which is an antihistamine for a few days. But the cream does wonders and I would not be able to live without it. It's worth giving it a try.
All the best!
And here I thought I'd tried everything. I've been to dermatologists (many) without success and gave up for awhile. I'll add your recommendation to my list of new things to try. Thanks so much for the information. I would be so grateful to get even minimal relief when it's bad.
In March I had blisters on my head the dermatologist said he didn’t know what it was. My blood test has come back with high platelets and my head is still sore and itching like crazy. I don’t know what it is. I don’t have the blisters just a sore scalp and itching, and not feeling very good, lots of body ache
Many skin conditions are a result of an inbalance in the gut. Do a search on itching and gut health. Fermented foods are important to manintain gut health. Research probiotics before buying as many on the shelves are impotent. High platelets are a RED Flag. See an MPN specialist ASAP.
Thank you for this info. Will chech out probiotics n talk to my doctor. So much to investigate. Love this site.
Thrombocytosis often results in elevated histamine. Liposomal vitamin C is also a antihistamine that can relieve the itching and help prevent bruising, purpura and leg ulcers by strengthing the skin and blood vessels. It lasts up to 4 1/2 hours. Non liposomal vitamin C doesn't last as long. If approved by your doctor start with 5 ml three times a day. Also note hydrea causes loss of magnesium so check "krispin magnesium" for magnesium info. Magnesium also prevents platelets from sticking together.
does high platelets always mean cancer somewhere, now all my reading is scaring me!
bluteco, causes for fluctations in platelet count are many and yes cancer is one. This link provides an overview allowing you to investigate each. Your doctor is the best source for elevated platelet answers in your case.
Answers to some of our symptoms will, I think, remain a mystery. My scalp itches from time to time, no blisters. Before my diagnosis I noticed a significant thinning of my hair which has reversed with the help of an Otc supplement. I'm grateful for any positive change. Hope you begin to feel better,
Thrombocytosis…..ET? UPDATE
Pre-diagnosis advice - persistent mild thrombocytosis 
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