My itching is driving me mad I cannot stop!!!!
I made myself bleed and my legs full of bruises. I itchy all day and wake up in the middle of the night to itch sometimes, I'm asleep doing it and my boyfriend has to wake me up or sometime he holds my hands. I am on fexofenadine which was helping but not the past couple it days.
Hi Avamia94,
You should tell your GP about your itching right away. You shouldn’t have to suffer for 2 more weeks. I used to have severe itching like that, with marks still visible on my legs 3 months later. I found eating oatmeal helped temporarily with the itching. It also helped if I wore long pants to cover the itching area. I’m a girl, and truthfully, it wasn’t until I had my first monthly visitor (for first time in 6months) that the itching finally stopped. I am sincerely empathetic to your situation. No one knows what it feels like until they go through it. I’ve found several posts on here before about the itching and people were prescribed some medication that actually helped. So, you should definitely a contact your GP.
Thank you I will do that then. I have made sure I have long pants on but doesnt stop me I get more itchy and have to take them off. The only thing that helped was a frozen ice pack but I end up melting it it also doesnt feel cold on me only my hands freezen and then im back in the same situation.. I will have a look to see what people have put thank you again
You can type in itching in the search bar at the top and it will give you all the posts. I think it might be helpful if you write down certain medications that people mentioned so that you can suggest those to your GP for a possible prescription.
I was so itchy I made my back and abdomen bleed and eventually scabs formed, which itched even more. That has eased now and the itch has moved to my thighs. I wish I had some advice for you. If I find a solution I will definitely share it on this forum. Much sympathy - I do hope you can find an answer.
Otterfield, research quercetin and look into high absorption quercetin supplements for your itching especially when used with liposomal vitamin C and check it out for MF too. Consult with your health care professional before using any supplement.
Hi Avamia94,
I had severe itching untill the unset of this years allergy season and taking a neoclarityn each evening.
I used to wake up with red welts on my thighs due to itching in my sleep and had terrible itching also with my showers etc.
I take Neoclarityn for seasonal rhinitis each spring. My GP has now advised me to continue taking neoclarityn as it appears to have worked for my itch also 😊. Hope this info is useful. Best of Luck with your quest for some relief
Poor you and all you suffering with itching, I think it is like a torture to have this hope you get some answers soon. x
I advise contacting your consultant and see if your appointment could be brought forward. Do you have a nurse you can contact? Failing that then your Gp.
The pain must be unbearable.
Thank you everyone my gp is great I asked at 9am but 10am he rang me and told me he will up my fexofenadine one in morning and one at night. Hopefully this will work if not I only have to wait till the 30th to tell my consultant, if he can do something if it doesn't work.
I do feel abit better knowing I'm not allowed in this. This group is fantastic thank you for all your support, help and advice.
For heavens sake, do not wait! Misery loves company - give your doc some company!!
Seriously - no one deserves to suffer like that. You need some relief ASAP. In the short-term, I have found relief using Eucrisa, which is a PDE4 inhibitor. It works great! Long-term, you may need a change in treatment for the MPN. Ruxolitinib is often what is recommended when the dreaded itch is occurring, but I have no idea if that is appropriate for you. Certainly something to talk to your care team about. This is really a question for a MPN Specialist rather than regular docs, however.
Hope you get relief soon.
Avamia94, liposomal vitamin c will build collagen to control bruising and also the itching. Use 10 to 15 ml three itmes a day. Also take advantage of liposomal curcumin for itching as well plus inflamation. Research quercetin and glutathiione for their effect on ET inflamation and overall health. Also check out red palm tocotrienol for lowering high platelets and other benefits when combined with quercetin. Always consult with your health care professional before using any supplement.
Is it from polycythemia or medication. Talk to your doctor. Also see an allergist. Have tests done to see what you are allergic to. Avoid everything they test for and then rule out by eating a few things here and there. The changes in your blood and how it reacts to food is what may be causing your itching. I get immediate itching from pepper, wheat and sugar substitutes. It intensifies in evening. If you avoid what causes your allergies it will help alot.
HI Avamia94, sorry that you are having such a terrible time with the itching, definitely speak to your consultant about this, or contact your nurse specialist, they should be able to help you with this and may be able to suggest some cream or ointment to help.
This information on our website might help as well
mpnvoice.org.uk/living-with...
Best wishes, Maz
Myelofibrosis patient experience talk -I'd like to do one at the Oxford Forum on 24th April
Can anyone help me with levels results please until I can see the Consultant. 
Not sure what to do, or if I should be worrying.
This is going to be interesting. Totally irrelevant I suppose but the challenge will keep me going. MPN or not. So stressed! My blood counts have been all over the place for the last few years. I was finally referred to oncologist, 
