Hi. Glad you found this friendly group. Welcome. Itching can be helped by taking a combination of H1 and H2 antihistamines: I take Zyrtac plus. Zantac in generic forms. However, Zantac ( ranitidine) has just been taken off the market in the UK, and elsewhere, so I’m looking for a replacement.
Sorry to hear of your recent diagnosis of ET. I also have ET and am on a low dose of hydrea. My platelets sit in the low 300s.
I think fatigue is the one consistent symptom that most of us with MPNs encounter. I have occasional fatigue which seems to follow no pattern. I have been hit this week actually. The majority of the time though I am just fine.
I don’t blame you for cutting back on your hours at work. I still work part time, and will retire in two years.
How did it come about that you were diagnosed with ETJAK2+? Your platelet count does seem normal, was it higher before starting HU? You take 3x3HU which seems a bit odd, why not take 1 HU a day and 2HU twice a week, spread it out a bit.
Hello , yes I see what you mean ... initially my platelets were 6... but quickly normalised....my Dr said 3 hydra a week , 1. Monday , 1 Wednesday and 1 Friday and last week after my 3 monthly check she said to stay with the same as my platelets were still low .... so I do as she advises always .......before I got diagnosed I think I was very close to a stroke ,constantly giddy and not being able to see clearly ... terrible headaches and seeing inate objects move ....... since the bmb and medication ....all of those horrible symptoms have stopped.
Yes I can see you had symptoms that needed to be dealt with. I am a reluctant patient because I did not have symptoms. At Guys they do not bully you to taking medicines, I do take 10xHU per week but not entirely sure I need it. My platelets currently are about 750, next checkup is in January. It is a trade-off between the toxicity of HU and possible consequences of not taking HU.
Welcome to the club that none of us wanted to join but are all glad to be a member of. This is a great place to get support and share experiences.
I was diagnosed with ET over 30 years ago. About six years ago, the ET progressed to PV. Still alive and kicking and having a good life, despite some of the challenges that can accompany a MPN.
You noted that you are JAK2 positive. Do you know what your JAK2 mutant allele burden is? This is the percentage of the JAK2 gene that is mutated. It is important both in terms of symptom burden and prognosis. If you have not been provided this information, the test is called a JAK2 Mutant Allele Quantitative Analysis (or similar).
It does sound like you have had some of the symptoms that can accompany ET. Fatigue is a common complaint with MPNs, but can also be a side effect of the HU (asthenia, dyspnea). Was the fatigue an issue before you started HU? Itching is more common with PV, often occurring after a hot shower (aquagenic pruritis). Since you are JAK2 positive, you may also be more prone (as I am) to secondary inflammatory conditions like eczema. The JAK2 mutation does not just increase hematopoiesis. It also increases the production of inflammatory cytokines. This can cause a variety of problems. I have found that for managing the itching/eczema - Eucrisa works really well.
I have Mastocytosis as well as ET and so take H1 and H2. It is only Zantac that has been withdrawn - generic Ranitadine is still available on prescription. My haem was fine that this is ok.
Out of interest how soon after your diagnosis did you start Hydroxy?
I have PV Jak2 Exon 12 mutation, but have been handling the symptoms with Clopidogrel , iron tablets and venesection, etc for the past 4 years.
Although I’m now set to try either Hydroxy or Interferon .
On reading people’s feedback from their treatments on this site, there are so many variants.
Just wondered if you were tired and itchy before you started Hydroxy, as I have those symptoms now, and read somewhere you can get relief with the Hydroxy.
I to have luckily been able to work a bit less as a self employed builder, but just get so exhausted, more than I’ve ever experienced before.
And totally agree that you don’t wish to tell too many people as they almost view you differently.
All the best.
Still waiting for a Buddy so thought I’d chat to you
Hello ... Mr Brindle ..., I was diagnosed with ET March 2018 ...but did not start hydroxy till March 2019 as all of the tests ..bmb... more blood tests ... more drs ....went on for a year..,
..I was tired and itchy before Hydra but although I still feel tired and itchy ...I am free of the most awful headaches and eyesight difficulties ...other horrible stuff ...
I take clopidogrel too .... I was going to take interferon but my my consultant said no as interferon can affect mental health in a bad way .... I explained my mental health depression was due to years of feeling so unwell (et)undiagnosed.... but the answer was still no ... as I had heard interferon was /is really helpful ...there is only a problem with interferon if you have had mental health problems ....
anyway the hydroxy has been really helpful ...please talk to me whenever you want ....
It’s good to talk to you ... please feel welcome ... whenever suits ...Lainie ...
Hello Mr B .... sorry your information for registrar was not great ....but I don’t think there is too much choice for people with our conditions .I never leave the house without high protection sunscreen on...I’m always telling myself that I’m fortunate in so
many ways as I have so many loved ones passed through either drink or drugs or both ...other types of cancer ...,at least by looking after ourselves and taking life day by day , sometimes hour by hour.... we have normal life expectancies....can you tell me about venesections as I have no clue of its meaning?
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