The major effect my MPN has on me beside fatigue is itching. I have itched since before first diagnosis in 1994. Have tried so many drugs . Numerous anti-histamines, cimetidine, paroxetine, steroids ,thalidomide, interferon ( made it worse). The only thing that helped was very large doses of PUVA but had to stop as after about 18 months was getting up to max lifetime dose due to skin cancer risk. Hate that I usually go most days OK till bedtime but better than before in initial diagnosis when a shower made me unable to sit still and read the paper over breakfast.
I don't expect any positive replies, nor do I want sympathy but if anyone has a positive suggestion it would be welcomed.
i enjoy exercise and don't mind feeling tired after eg 12 mile walks or 30 mile bike rides but don't find exhaustion helps , just makes itching worse and sleep more elusive. Doesn't stop me getting out and about though.
Don't expect a positive response but as my Dr's have no ideas thought i would ask all of you.
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skodaguy
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Hi Skodaguy, i suppose i could share what ive worked out about my itching, though not sure its the same for anyone else. Ive identified that i itch mostly after certain foods. For example, if i eat shell fish, my itching will ramp up significantly, not as bad when i eat meat but still a bit itchy so have removed both from my diet. It was a process of elimination for me but it was worth it. Hope you find something that works for you. X
Hi Skodaguy,
I have ET and also a little medley of things like Lupus and Scleroderma. I have experienced severe itching and three things that have helped improve it - having my thyroid properly medicated, a course of vitamin D (I was severely deficient) and a course of iron when my iron stores were all but empty. I had blood tests for all of these things. Obviously overdosing on these supplements can be toxic.
Best wishes. Hope you get some sort of relief. I don't think people understand the impact of this uncontrollable itching.
I'm afraid I can't be of any help Skodaguy as I suffer from the same horrendous itch constantly and haven't found anything to stop it. As with you, mine is worse at night and I lose sleep due to it.
Hello Skodaguy, I am sorry you are going through such a difficult time with itching. I can remember having really bad itching in the past and walking the floor at times but I seem to remember it coming under control when I was settled on Hydroxy. It rears its head every now an then now but only for a short time.
You don't say what MPN you have or if you are taking a drug.
Has your hematologist specialist or clinic nurse had any suggestions?
I always shower in the morning and have the water just warm. I tend to pat myself dry rather than rubbing. I remember when it was at its worse for me that I would dip in a bath rather than have a shower with the stimulus of the water. You take a lot of exercise so I guess you will have to find the best time for you to shower or bathe. It just ain't easy!
I've never taken anything specifically for the itching.
You're speaking to one who was nearly driven to distraction by the ghastly aquagenic pruritis, long email so bear with me!
In fact I was diagnosed with PV purely because I recognised this ghastly " itch" as being blood related ( it affected me badly when I had hepatitis A about 20 years ago ) and I booked myself in for a blood test. My GP was previously flummoxed by the most appalling headaches, fatigue and visual disturbances.
Anyway I prattle.
I found this itch not to be "just an itch " and I think is seriously underestimated by most haematologists.
When I spoke at a London forum at Guys last July I described it as similar to having thrush under your skin, having a blow torch on your skin, and a million insects biting at the same time.
It made my life hell and although I'm a hardy old boot of 62 it reduced me to tears on many occasions.
I found drinking half a litre of water and walking very very briskly would help, but that's no good if it bothers you at bedtime.
I decided to note the things that made it worse - showering bathing or swimming - and so I haven't done any of those for almost 5 and a half years. I have a bidet, wash underarms in basin and hair over the bath.
Once a week I wipe my skin very gently with a well wrung out face cloth. Amazing how not dirty our skin is!
I no longer drink alcohol or eat sugar and I don't wear tight synthetic clothing ( you'll have throw out your tights, leotards and swimming costumes then!)
Recently I was diagnosed with histamine intolerance. Long story won't go into it here.
I do wonder about the relation between raised levels of histamine and PV.
There's a bit about it on t'internet if you google histamine and polycythemia.
I believe research should be done into that.
If you wish, and you email me direct, I can send you the SIGHI histamine food compatability list. Switzerland Austria Germany France US and Canada are far more aware of histamine intolerance than medics in the UK are. Hopefully that will change.
The American journal of clinical nutrition has a very good article on histamine and histamine intolerance.
Anyway, trying a low histamine diet might just help.....
Hello, I was interested you to mentioned UVB light treatment.
I am PRV+ Jak2 and 71 last week. I had a course last year which consisted of attending hospital 3 days per week for at least six months on the trot. The treatment starts off with just 30 seconds in the light box and each time you go it is raised by between 6-10 seconds. As you can see it takes six months to build up to about six minutes in the end. It did help and my severe itching eased off considerably. That was finished in November because I was going off to NZ to visit my son. I am beginning to itch once more so as I am seeing the skin guy I hope he will do it again, you cant have too many rounds as then skin cancer might kick in. I take Hydroxycarbamide and various other drugs but none seems to affect the dreaded itch including Anti-hist. June.
I find that cold flannels or the fridge bags for muscle injury wiped over the skin does help me considerably. It might not go away totally but allows one a bit of relief.
Strange how it happens mostly at the end of the day and certainly if I am over tired (not through exercise though) it seems worse. Baffling!
Hello Skodaguy, So sorry you are troubled with this infernal itching problem we all seem to have, As some have said it is not really itching as such it feels like someone is stabbing with a million tiny needles that cannot be ignored.Mine went on so long, I saw a skin specialist who recommended UVB light treatment, anything to help so I did this three times a week at my local hospital, you have to stick with it . You stand in a tall box structure filled with UVB lamps (starker's I might add) and start off with only a few seconds then over the next six months you build up to about 6 minutes. I don't know if this is the same treatment as you have had in the past but if not then ask for it. It has almost eliminated my itching, I still get the odd flash but it goes away in a flash too.
It was so well worth the effort , I hope this helps . Good health to you. June
I'm just the same, sometimes I end up downstairs at night watching rubbish tele 'cause I can't stop ITCHING!!!
I have ET so I guess its the same for any blood disorder. I maybe thought is was the hydroxicarbomide causing it? The doctor prescribed Dermovate which seems to help, give it a go. Good to hear you are active; I swim most days, and with showering at the pool the itching is better. The thought of showering before bed is a definite no no.
I am fortunate as my itching is only mild (i have pv) - just occasionally after a shower. I do find however if i am on holiday in a warm climate that it doesnt affect me, i think this is because when you get out the shower its the contrast in temperature that causes the histamines to do what they do, but when its warmer they dont act in the same way. Maybe there is something in that and finding a way to keep warm after a shower might help (heated towels, warm dressing gown?).
My sister (ET) does itch more than me - shower, bath, sweating she will itch. What helps with her is taking her mind off it, i guess the more you think about an itch the more it will be there - i dont know, but it does work for her....sometimes she will just ring for a chat when it happens and it takes her mind off it and she stops itching.
Hi skodaguy. I sympathise, my itching always comes on after a shower or if my skin is dry. Like you I tried antihistamine, but didn't want to medicate with any other pills etc.
so then I discovered Eucerin ato control shower oil. So this has been fabulous for me. You apply it all over whilst in the shower. Once I am wet I turn the water off and apply it , especially on upper arms and legs which cause me the worse problem. I have to say it has done the trick for me 95% of the time no itching, but sometimes I may get that little prickly feeling that I think oh here we go but it subsides very quickly.
Also I find if your bathroom is warm it helps, get your self dry asap. With warm towels.
This sounds like quite a performance but it works for me.
Sorry to be so long winded but it's really worth a try.
Hi I keep bathroom hot when I have a shower and put warm dressing gown on after i warm towels on rail and keep shower not too hot and moisturise everyday when had shower and put dressing gown on and let moisuriser soak in also use tea tree in shower gel use shea butter or olive oil moisturiser and at night have a cool pack near my neck and head doesn't clear completely but routine does seem to help also make sure well hydrated plenty of water don't know if will work for you x
What a brilliantly helpful post skodaguy. So many great tips. Im really interested in the histamine link and wonder if thats why my itching seems related to allergens? Thanks for getting us all sharing and talking. Jo
Just remembered that Ruxolitinib ( I think the manic trial is still going on is it Maz?) knocks pruritis on the head within 48 hours.
My wonderful haematologist at Chrisities offered me the option of trying it, but touch wood, I'm very happy on Hydroxicarbamide and loathe to rock the boat simply to treat an occasional bit of itching which rarely troubles me now.
If you'd like to put yourself forward - PV only I think - and your hospital doesn't offer the trial you could think about transferring.
I travel two hours each way to Christie's rather than my local hospital and it's worth every mile.
Thank you to all of you who has responded. Sorry I can not find something I haven't tried or considered. You are all so understanding of an issue frankly our doctors are equally frustrated with because it means we reach for unhealthy but practical options.
Just had an e-mail from Prof Claire harrison after my second appearance at NICE. NICE has approved rux but I am nut sure at what level but I think it is below high risk MF .
How the hell that committee grew a set is beyond me but I am grateful .Look forward to seeing the full judgement.
Anyone on this site should be sending a message of thanks to Prof Claire Harrison for her dedicated unreliting and totally focused work on our behalf.
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