Well this is my first post, I've recently been diagnosed with Etjac2 after 10 years of raised platelets (but under the nhs sussex threshold) .Last year I suffered bilateral pulmonary embolism in the October and then had to fight to see a Heamatologist. Eventually talking my Rheumatologist into it by saying it could be cancer.
Now on hydroxcarbine 3 times a week at 500 mg.
My question to you guys as I've now as survived my first week., Any help with itching!!! Mainly just my head.
Not sure if it's to do with the arthritis & nerve pain meds
Written by
Spanelmad
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A number of different drugs can have itching as an adverse effect. The interferons (Pegasys/Besremi) cause itching for me. Note that the JAK2 mutation can also have itching as a symptom.
Since you are new to hydroxycarbamide (hydroxyurea) you should be discussing this issue with your MPN care team. Do note this advisement mskcc.org/cancer-care/patie....
What are some side effects that I need to call my doctor about right away?
WARNING/CAUTION: Even though it may be rare, some people may have very bad and sometimes deadly side effects when taking a drug. Tell your doctor or get medical help right away if you have any of the following signs or symptoms that may be related to a very bad side effect:
Signs of an allergic reaction, like rash; hives; itching; red, swollen, blistered, or peeling skin with or without fever; wheezing; tightness in the chest or throat; trouble breathing, swallowing, or talking; unusual hoarseness; or swelling of the mouth, face, lips, tongue, or throat.
I would not assume the itching is just in your head. While it is likely something minor and not a sign of a serious reaction like the above warning, it is safest to not make assumptions.
If this is just a minor reaction of some sort then there may be simple interventions. The itching I get from the IFNs is easily resolved with a daily antihistamine.
Suggest you give your MPN care team a prompt call and see what the suggest.
Thank you for the advice , my Go has put me on 180 mg Fexofenadine daily seems to be helping .I've a blood test on Monday and see Heamatology on that friday
hi Spanelmad, welcome to our forum. Itching is one of the less common side effects with Hydroxycarbamide, so it could be that causing it. It would be worth speaking with your haematology nurse specialist to ask for some advice. Hopefully it is just a temporary problem and may settle down, some people do find with side effects that they settle down after a couple of weeks, but if they don't then it is something to discuss with your haematology team.
I hope the information on our website is helping you, mpnvoice.org.uk, there is lots on there about ET and the different medications used to treat it, and lots of lifestyle hints and tips. Best wishes, Maz
Itching is common MPN symptom, some of the anti histamine type meds help some, beta alanine has some good reports, I used UVB phototherapy with very good results prior to Rux , Rux is good for itch but not used that much for ET because it also lowers reds and platelets, some on Peg or Besremi get relief from itch but for some it can make it worse.
For some Hydroxy can reduce or stop itch so maybe worth trying it a bit longer if that is your drug of choice.
This group helped me find Beta Alanine and it’s been life changing - itch used to be daily (sometimes multiple bouts per day, too often agonizing). No itch whatsoever as long as I start my day with half tsp (mix with water). Some folks do AM and PM dose.
FYI, Rux did nothing for my itch. I only share in case you experience the same; if that’s the case, don’t be discouraged as I still managed to find something (BA), thank goodness! Good luck to you!
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