I have PV and am recently experiencing awful itching skin only after showering. I’ve reduced my showers to every second day and started taking an antihistamine 30 mins before which worked initially but not this morning 🫣they are 10mg tablets I wonder do I need to take a bigger dose? Does anyone have any other tips? I’ve read about beta alatine but havnt tried that yet.
I’m on peg interferon 90mg a week for the last 3 months and bloods are improving, this itching started only 2 weeks ago.
Any suggestions much appreciated 😊
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Deevie1
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Hello Deevie1,I really feel for you because I experienced that itch for 6 years and it became all consuming and unbearable . Things that helped were an anti histamine, fexofenadine; after trying numerous moisturisers and soaps I found an oil based one, hydramol: avoiding sudden changes in temperature; and although dermatologist's advice was tepid showers I found a hot one better. Photo therapy stopped the itch but once the course of photo therapy ended the itch returned. The itching stopped when I started Ruxolitnib 2 years ago and hasn't returned yet.
I hope you too can find a remedy for your discomfort. Good luck.
Aquagenic pruritis is a problem for some with PV. Jakafi (ruxolitinib) is the PV med that is best known for its efficacy in treating this issue. In addition, you will find these interventions from a number of sources. healthline.com/health/polyc...
Aspirin. Many people with PV take low-dose aspirin daily to thin the blood. Aspirin may also help reduce the itch.
Antihistamines. These medications reduce the histamine in your body, which is responsible for a variety of allergic responses, including itching skin. Your doctor or pharmacist can recommend the right OTC or prescription medication for you.
Antidepressants. A group of prescription drugs called selective serotonin reuptake inhibitors (SSRIs) can be helpful. Regular contact with your healthcare team ensures you have the right type and dose for you.
UV light therapy (phototherapy). UV light therapy can be helpful for many skin conditions including PV itching. It’s done in a medically supervised setting because too much UV can make your skin feel worse.
Interferon alfa. This medication is often part of PV treatment and can be quite effective at improving itching skin. It’s unclear exactly why it helps.
sorry to hear about the itching, I had it bad for 10 years, it seems the main fixers are UVB phototherapy, beta Alanaine for some and of course Ruxolitinib. For some Interferons can make itching worse and for some make it better. I did UVb for 10 years daily low dose at home and it reduced itch dramatically, no skin problems from UVB rays. I am now on Rux which is the best for itch. I cant say re doubling your antihistamines, I tried that and made no difference, you could try it for a few days and if it works then check quickly with your doc or haem or check first.
I had experience similar to JP1952. What helped was atarax/hydroxyzine, which in the US you need a prescription for. Benadryl also works for me. I used those along with phototherapy. But what's really made a difference is Jakafi instead of hydroxyurea.
Taking a Histamin before showering is just blocking the symptoms and continuing to use something your body is retaliating against. I had tingling and itching after showering for years. It went away as soon as I bought organic shampoo and conditioner. I use the shampoo also as a hand soap and body soap.
I no longer believe in showering every day unless I’ve been training or sweating. It’s not good for the skin microbiota. 20 years ago, I was told by the hospital to only wash my baby once a week, to spare her skin. Only baby’s faces and bottoms need to be kept clean and best with water and then protect with a bit of olive oil. No chemicals. Just think of all the babies and children, who have dermatitis; explosive.
I usually shower ever fourth day but clean my armpits and private parts and feet daily. Since family has been on the autoimmune paleo diet 6 years now and we eat mostly organic, we no longer have body or mouth odour.
Our body creams are also organic. Care must be taken when buying natural shampoos and body creams. Most of them have chemicals in them.
We are people with sensitivities and it is helpful when we reduce whatever is bothering us even in the slightest.
Believe it or not I have heard of people who cannot bathe in water. They have an allergic reaction. It is really rare and I hope you don’t have this.
Also, make sure you have enough vitamin D. A 50-70 blood rate is optimal!
Santé Family shampoos and conditioners. It’s a German company. It’s not 100% organic, but the closest to it. I order 12 litres at a time through internet. The price is excellent and anyone can afford it. 😁
Hi I’m on Aspirin & 90 mg Interferon injections weekly and had terrible itching especially after shower or trying on clothes , Beta Alinine helps 100% , I take 1/2 the provided scoop ( about 1/2 teaspoon) 1/2 hr before my shower or when ever I feel itchy . I was put off at first as it says it causes itching but it doesn’t it’s more of a tingle not unpleasant for a couple of minutes. So glad I took the plunge and used it . Hope this helps .
I feel for you because I have the same myself. Reducing the time of showering helped me. In fact, my shower now takes less than one minute for that reason.
Like all of my Hydroxyurea side effects the itching comes and goes day by day. On bad days it may last an hour post shower but most days a quarter. I take cetirizine twice a day which was not brilliant when I had chronic rhinitis but seems sufficient so far for the itching. Evenings bring a bit of itching in arms and chest but much milder than the morning post showers. I use no soaps moisturisers etc so l don’t think that is a factor - l just shave, brush teeth etc with water in the shower.
I forgot to mention in my post yesterday that I find aerobic type exercise , eg speed walk,jog, bike , stair climbing etc for about 20-40 minutes before a shower made a big difference for me pre Rux
Deevie1 i have had the same issues. the itch was so bad i didn’t know what to do. I tried everything and nothing worked. I finally took a scalding hot bath, and it worked the itch went away for the entire day. If I take a regular shower, I will itch, but if I take a shower and make the water extremely extremely hot. I will not itch when I get out of the shower. I know it sounds a little crazy but it works.
I also have experienced this for years and notice seems to only get worse over time. I try to use only slightly warm water, the cooler the better and use lotion on my skin immediately after shower. This has helped a bunch. I hope that might help you some. Christy
I have these itchies as well, what a pain!! What I discovered is that if I take a warmer shower and stay in longer and let my body come up to temperature and keep the bathroom warm about 78 degrees or so, then I have less risk of the itching. I discovered this after trying the whirlpool at the gym and found that at least 5 minutes and upto 10 minutes I get no itching, even with the pool area at about 70 degrees. Works for me about 90% of the time, results may vary!
Itchy skin after shower was one of my symptoms of PV. I take hydroxycarbamide and my itching has stopped completely. See if you can change your medication .xx
Since this is a new symptom, I wonder if something changed in your water supply. My nephew stayed with me for a few months and experienced itching after he showered. He never had it at his home in a different city and it went away when he went back home.
I had the same.Truly awful for 20 mins after showering. Medication is not the only route.I have since gone onto HU which helps a bit. But the main solution is NOT to shower so often.This is a modern obsession. If you are older you sweat less. I sponge washed ( no showers) for a year. It helped a lot.Things improved a bit recently so I cold shower (1 minute) every other day and pat dry.Do NOT rub skin with towel...
The itching got progressively worse for me, all my life I've always itched after a shower more of an annoyance until dry. Then after a month or so on weekly peg interferon I had a shower and it was hell on earth the itching was intense from head to toe and I felt like I was being burned. I broke 4 of my back teeth gritting them in pain, punched a concrete wall in temper and didn't feel it over the sensory overload.
Got to the point where it would be kicked off by my own sweat or sudden change in temp or even washing my hands. I came off the peg interferon and over the last 6 months it's got better. I can shower now it's not nice but it's bearable. Last shower was a fortnight ago and I didn't need painkillers or anti histomen but I did drink half a bottle of whiskey to muster up to it! Sozzled on the way in - stone cold sober after the shower due to the mental anguish and the physical come down. I am sure I've got some form of PTSD but refusing to let it win.
Aveeno shower cream worked a treat and loads of E45 before and after a shower.
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