Hi ... can anyone please please tell me if hydroxyurea got rid of PV itching ???????
OH my Lord.. I would love an answer... for me it’s not just water that will strike up an episode of itching.. it’s just getting dressed that will do it .... honestly it’s extremely extremely unbearable!!!!!!So I’m just about to start taking hydroxyurea and hoping it’ll stop the itch... anyone please ????
It helped my itching! I pray it will help you also. But also what helped me is using a washcloth in the shower with Okay liquid shower soap the yellow bottle. Good luck let us know how you do !🙏🏻🙏🏻🙏🏻
Oh thank you sooooo much Granada!! I hope it helps my itching ... I just needed to hear that it helped SOMEONE!!!! And I will try the yellow bottle Olay !!! I use the wash cloth with dove foam soap but I’ll try the Olay!!! Thanks again!! You take care!!!!!!!!!
Sorry it’s ggrana not Granada !!! My phone changed it !!! 🤪
Only had mild itching and now take 500mg Hydroxy a day and no itching. It did take a while as on a lower dose I still got the itching . Good luck
Hello Keiks, sorry that you are experiencing this awful itch, this information our website might help
mpnvoice.org.uk/living-with...
best wishes, Maz
Hi
Had terrible itching after taking a shower. I turned temperature down. I had to leave it about 10 minutes before I got dressed, especially putting jeans on. I used to itch over and it drive me mad but so bad now though, so there is hope.
Hi Keiks,
I progressed from ET to PV while on HU and the itching got worse over time, I was lucky enough to get Ruxolitinib as the HU was not controlling my counts.
On Rux the itching and night sweats have completely gone, so have the headaches and I have not had a venesection since starting it.
Itching ( Pruritus) is a known side effect of PV and if the HU dose not work it is worth trying to get Rux if possible.
Good luck and have fun.
Ourlife
Ruxolitinib is known to be far more effective the HU in dealing with the itch. Itching (pruritis) is one of the specific clinical indications for making the switch to rux.
Hi Keiks,
I feel for you as a fellow sufferer from itching. I have ET and been taking hydroxy since November in increasing doses. Unfortunately, it has not helped at all. Showering, dressing, moving from room to room, just exposing my legs to the air for a visit to the toilet, even brushing my teeth or drying my hair can all start the burning, itching, needles, prickling. It is relentless.
I have recently been helped by posts on this forum. Using an oil based lotion for washing/ moisturizing and only moisturize the affected areas, warm to hot showers on a mild pressure setting, drying quickly by patting with a warm towel, and dressing quickly in cotton, loose clothes that cover the skin but keeping warm, and antihistamine tablets.
Of all these cessation of using water based lotions has been the game changer.
JP, you may find relief with 15 ml Liposomal Vitamin C three times a day mixed with 5 ml of Liposomal curcumin. Investigate quercetin. It's available in a higher absorption liposomal formulation. Add 12mg of Astaxanthin twice a day.. Vitamin C also helps prevent brusing and purpura. Two Brazil nuts a day for the selenium and also 45 mg of K2MK4 three times a day. Research it for it's role with MPN's. K2MK4 originally was known as Activator-X, see what is did under that name. In addition to addressing the itching, these may slow progression and add to platelet control. This link to the Townsend Letter of December 2017 offers insights to how these supplements work together. First, research each as it applies to your itching. Also learn about liposomes. Always consult with your health care professional before using any supplement.
townsendletter.com/Dec2017/...
One thing to watch if planning to take vitamin C is that it increases iron absorbtion which is likely to increase RBC production and hence increase Hct and Hgb etc, maybe not ideal for PV patients, or monitor carefully
What I do is drip dry after a cool shower, except for head and face. If I get to excited and dry off the itchies start right up and last for a godd 20 minutes. Mine is limited to right after showering. In the winter here in Colorado where the bathroom is nice and warm and humid I don't seem to have any problems. I have not tried the oil of Olay soap, The itch is a type-2 allergic reaction and can be tamed for some with the right anti-histimine.
My Oncologist says it is typical of high levels of Hgb, Ihave PV. but my levels are pretty well controlled with 500 mg Hydroxyurea.
Good luck!
Hi Jsb45..... I am about to start hydroxyurea so I really hope it helps with this “itching”!! Out of curiosity .... did you have any nausea, etc when you first started hydroxyurea?????
onlinelibrary.wiley.com/doi...
Also, you may find this link informative and useful.
Hi JP1952 ... thanks for the link ... I will definitely read it !!!
I've been itching for a couple years which is what led me to ET diagnosis recently. 1000 hydroxyurea has not done much to relieve this awful itching. My itch develops into small bumps which will turn into small sores which linger. My itch seems to go in cycles. Have tried so many lotions, creams, talcs, and anti.itch rx n nothing makes a dent. I hope you are more successful.
Oh I’m so sorry Mollymag2......I know, I know !!! Nothing has worked for me either!!!!!!! 🥵🥵🥵
Hydroxy didn't help my itching. I started taking hydroxyzine (Atarax) one to four times a day (made me sleepy, had to drink lots of coffee). Benadryl also works. On terrible days I took Emend off label, which was pretty expensive. Since I've been on Jakafi (now down to 5 mg/day), itching has been way way way better.
I found taking Beta Alanine an hour before a shower solved the issue. It is a natural compound you can buy in Holland and Barrett or online.
Hi Sweetlucy!!! I do take beta alanine powder... it has helped somewhat but “somewhat” is better then nothing when you suffer with this !!! I can’t call it an itch .... it’s a pinching/stinging/itching...!!!!!!!! Thanks!! Be safe !!!
I was taking 2x800mg tablets. Perhaps you are not taking a higher enough dosage. Try the tablet form. Mine is made by Precision Engineered. It is a sports nutrition manufacturer. Google it if interested. Oddly enough the itching has suddenly stopped so I haven't used them for over a week.
Why has the itching stopped?
I will try a higher dose and the tablets.... thanks !!!!!
Hi Keiks
I'm sure everyone has found different solutions to this horrendous itching. I have to say that I have found a "miracle" cure for itching after a shower. For me, I take one Cetirizine tablet 1 hour or just over before going into the shower. Then (I can't believe I'm saying this) there is NO itching after the shower. It's like a miracle. I find Cetirizine generally very helpful for pruritis, but the shower instance is amazing. I started this following advice from a woman who was attending the Nottingham forum when I was there a few years ago. I've never looked back.
Apart from the shower, I do find the choice of clothes also makes a difference and I tend to go for loose fitting cotton if possible.
Anyway, I do hope that helps. Itching really does have to be one of the worst symptoms we have to cope with.
All the best, Sandra
Hi Sandra thanks for this .... I have cetirizine but never used it because I figured it wouldn’t work because I’ve tried so many antihistamines including prescription... I will try it in hopes it’ll work for me ... fingers crossed!! Thanks again ... please take care!!!
I really feel for you. It really is unbearable.
My GP gave me antihistamine which helped a little. I have started on Ruxolitinib and within 24 hours the itch had gone, but I had progressed to Myelofibrosis So it was bitter sweet.
I do hope you get some relief. X
CALR ET and hydroxyurea
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HYDROXYUREA ET
