Are you affected by itching?How you treat it? - MPN Voice
Are you affected by itching?How you treat it?
Yes I am. not sure you can treat it as such, I itch when i sweat and after bathing. I havent been able to take a shower for 5 years due to the intense painful itching afterwards. Even after a bath or a stand up wash I have varying degrees of itching on torso, back, legs, arms, it helps if you or your partner pats you dry and you pop some clothes on straight afterwards. It lasts for 10-15mins then eases off. I find the hotter the bath the better, but it mite be different for you.
My determologist ordered Kenalog spray for the itch.
Wow, hi, I'm so intrigued to read this, I've had PRV for 5 years or more and the first 3 years was horrendous itching/burning, I ended up in hospital several times being injected with adrenaline. I have done a great deal of research and have found that a lot of the itch is from "vibration" on the veins, blood, the shower, the rain, any form of stimulation, and yes you are correct about the heat, if you keep warm after bathing and get dressed quickly, keeping the temperature the same the affects are far less. I have not had a shower for all these years, have to bathe instead, no stimulation, try it and see the difference it will make to your life.....I would love to keep having this conversation around this topic, I feel we can create some relief for many........
Hot water helped me, and putting on a warm bath wrap right away, down to the ankles! In winter I then crept back into my warm bed for half an hour .It is very strange, but the itching has disappeared and I have no idea why. It may be summer weather, but it is a puzzle. The only things that I have done differently: exercise bike with high-intensity training; no statins; Coenzyme Q10 daily. The exercising was a struggle to start with but now I love it.
I have had occasional and, by the sounds of it, fairly mild itching. Like others it is after showering that it usually occurs. I understand that it is a somewhat intractable problem. For myself I find that showering in the evening is better than the morning and if it becomes too unpleasant then taking an antihistamine (my hematologist prescribed 'allercalm') can help. I have also noticed that if i set off for my morning walk whilst still itching that also seems to help. Not sure why but maybe it is better to do some activity which can help take your mind off the itching and maybe the exercise and movement also helps.
yes
on my body i use E45 on my feet I use Nivea face cream but have to be careful not to use my wifes face cream
Chris ET for 25 years
In the latest issue of MPD Life, two patients shared some really great tips on managing itch. The newsletter is available to read on line or download at mpdvoice.org.uk
I have had pv for 3 years, and am on hydroxicarbamide and aspirin.
Itching ( known as pruritis or Aquagenic pruritis if you want to google it) is huge problem for me, and unfortunately haematologists and gps are not good at helping.
This is my regime!
1) I avoid bodily contact with water unless absolutely necessary. I use a bidet or squat in the bath to wash feet and other important bits! Otherwise I use sensitive skin baby wipes. You will be amazed how not dirty your legs, arms back and torso are - and I m assured I don t pong. If I m desperate for a shower I take 2 teas piriton 30 mins before, have a very very quick and gentle shower ( not power shower) in luke warm water, pat dry, dress quickly and then walk really quickly for about 40 mins.
2) I drink at least 3 litres of water ( still or tap) in 24 hours. Space it out and you really get used to it - in fact you ll start to miss it if you don t drink. That s as well as at least 4 mugs of tea a day....you won t spend all day on the loo. Not quite sure where it all goes actually!
3) as much exercise as I can manage. At LEAST one and a half hours walking a day. Try and walk as briskly as you can. Cycling's good too.
4) I take 2 x 5 ml teas of piriton syrup when I itch, takes up to 40 mins to take effect so take well before bedtime. ( obviously only take as advised on bottle) I also take cetirizine hydrochloride at bedtime. If you get really desperate try 1 x 400mg ibuprofen, but not at the same time as aspirin.
5) try and avoid alcohol, and too much sweet stuff. Chocolate makes me itch.
6) you may find that the sun helps but be careful not to overdo it, and don't use a sunbed. Be wary of sunscreen, I ve become allergic to it.
7)Cotton percale bedding- its fine and doesn't "pill" (John Lewis is good and not too expensive. )2.5 tog duvet at this time of year. Wash your bedding in a "sensitive" liquid and conditioner- I use ecover.
8) use a cream on dry skin, Vaseline intensive care or E 45 lotion. Don t massage too hard.
Try keeping a diary and note what makes you itch and when.
Hope that helps.
My GP recommended a bath with bread soda in it. Sounds daft (apparently an old fashioned remedy), but ironically it does help me. The bread soda makes the water incredibly soft. I havn't showered for ages, the minute I go into a shower the itching is unbelievable on the legs and torso, but I can cope with baths.
I never measure it! Just put in a good bit - works for me. Good luck with it.
I use UVB narrowband TL101. Its basically a UVB sunbed with the safest wavelength. I consuted a dermatologist and he tried me on the hospital UVB bed and then I bought a smaller one. It reduced my itch by 95%. Before a shower was a trauma and the itch could be vicious for 45 mins afterwards. Now I use the UV every 2 days for a few minutes only and now I can shower after the gym and its only a mild irritation for a 5 minutes, a god send.
If anyone wants more info on this ask me, as someone else mentioned its also on the recent MPDvoice newsletter.
I see from reading the answers here, That many persons suffering the itching actually do the oposite of my solution? I continue to shower, wash, bath, etc, however I finish off by using cold water, particularly at the end of my shower. When the itching is very persistent, I use a lavendar lotion and this helps either by the soothing effect or the distraction of the application of the lotion. Sensations such as itching or pain are very individual, therefore it is unlikely that there will be a universal cure all until much more is known about the route cause.
My solution is that, after shower, I went to reserve 30 -40 min to scratch myself with comb
I was also greatly affected by the dreaded itch but I increased my water consumption after reading this article regarding the role of histamine as a neurotransmitter, it makes sense as Piriton Anti Histamine tablets also, in my case, help get rid of the itch.
watercure.com/pdf/neurotran...
I have also seen a homeopath who also addressed the itch problem, my only real symptoms are mild night sweats and feeling cold first thing in the morning.
I have MDS with excess blasts (RAEB2) my initial blasts levels were at 10% but since I started homeopathy this has dropperd to 3% which I assumed was good?
However my CD117 levels were 10%+, does anyone know what this means and what effect it has?
The stand-in Consultant suggested I might need to start Azacitidine in a few month, can anyone relate their experience on this treatment?
regards,
Philip
I have had this condition for the last 16 years. I not only have it after any contact with water (sea and tap water) but yes, also after sweating, also when changing clothes (trousers and tops which touch my legs), after any sort of touch or rubbing and sometimes it simply comes on after 4 hours of sleep or so and stings, itches, pricks on the soft skin on arms and legs. Very Very painful!!!!
I have been close to suicide with this condition but am still going and have found some ways of dealing with it which I list below:
never use a towel on areas affected. Dry with a hair dryer.
put scolding hot water bottles on legs when having a bad attack.
try to expose to sunlight as much as possible and if it is possible for you, to swim in sea as often as possible.
My condition when I am having an attack is also relieved by strong movement. Running, shaking legs etc. (this is why I am also diagnosed with RLS and polyneuropathy) It is also at its worse in Autumn and Spring. I have recently been wondering if it is possible to have a parasite living under skin for all these years - but then why would it come and go and get better at certain times of year. I don't take any medication apart from herbs, homeopathy and any other natural things which I mind sometimes use.
Good luck to you all. If anybody knows anything about parasites and if this could be the case, please share it. Apart from all this, I am a very fit, active slim 64 year old.
How long before you are diagnosed?
now my local Heme/onc says I have ET not PV and it matters how they treat me. 
How old were you when you were diagnosed and how old are you now?
How often do you have blood tests?
