Itchy lumps myelofibrosis

[ardpatrick]

Hi my husband has myelofibrosis and recently has lumps appearing on his body, these lumps are red can be itchy and sore, some on his glands. Has anyone had this, thanks

We saw the haematology this week but bu then they had gone but a few days later they returned

[socrates_8]

Hey ardpatrick ...

My name is Steve from sunny Sydney down-under.

Yes, I also suffer from those dreaded lumps & bumps/blisters of various shapes & in various locations.

My haematologist sent me off to an all but useless specialist dermatologist, who in turn suggested that I should consider showering twice a day – so insulting...

However, I did utilise the various topical lotions & antibiotics recommended. However, at this juncture, those monster lumps & bumps continue to antagonise me.

After some reserach of my own, I have come to the growing speculation that it is the Ruxolitinib (Jakafi) that is actually the cause of these side-effects. Hence, I intend to slowly commence lowering my dosage from 25mg bid, until I see some sort of change.

It might well be that these lumps & acne-like bumps & blisters are, as a result of having to take both the Jakafi & the prophylactics that is meant to protect us against contracting things like shingles etc...

Stay in touch. Maybe between us we might eventually find a better solution.

Best wishes

Steve

[ardpatrick in reply to socrates_8]

Thanks for your reply really helpful

[ardpatrick in reply to ardpatrick]

Hi my husband is just having another bout of these lumps, however he is not in any medication for myelofibrosis at all. He was diagnosed in 2009 and were told there was no meds that would help him.

He is having weekly transfusions of two or three units occasionally he has one week off, he has built up iron so his iron levels are 4750, his platelet count is 4.

He still goes out driving we live in the country and still is able to do a bit of gardening, My previous husband of over 30 years had myleod disphasia he had problems with his skin since his early thirties but was not diagnosed till 1996 hope this helps. Have you tried antihistamine tablets. Keep on asking questions

[bordeauxgirl]

Hello Ardpatrick,

Sorry to read you are suffering with these pesky rashes, I too have been having a sort of rash on my shins, that I can only say they are itchy as hell , it is confined to my shins and resemble small scale bubble wrap, they don't blister or weep nothing gruesome . I have been treated by a skin specialist who sent me to the hospital to stand in a UVB light chamber thinking this would help. It was for three days a weeks for about 5 months, a real drag because it didn't help.

I do really think that this just a side effect of this disease we all have, I don't think the rashes are caused by the drugs just the condition.. We found on a site in NZ that said it is caused by dryness under the skin, so the recommendation was to hydrate the area. The specialist gave me all sorts of creams, ointments and lotions. nothing worked , the NZ site recommended good old Vaseline. After a few weeks my rash cleared up, but it has returned three times, so now my GP has given me Cetroban, ( for all things Dematitis/exzema). My rash has diminished within 4 days of using it, it is not as itchy and it is fading. you can buy it over the counter but I would say, ask for a script from the doctor as you can get a huge tub instead of a small tube, you will need a lot. I do hope this helps as it has helped me. BTW I have had PV three years now and this is the first let up I have had. Good health and luck to you . June

[ardpatrick in reply to bordeauxgirl]

Thanks for that will speak to GP about cream

[liarose]

I have lots of recurrent lumps and sores on my lower legs but don't take Jakavi as yet

[Leighcox]

I have mylefibrosis to diagnosed at 24 Iam now 32 and only recently started taking jafiki 6 months Iam on 20mg and I have never had any skin problems at all till I took this drug now I have acne like skin on my face back and scalp I spoke to my consultant and it is jafiki that does it nothing really works I have tried it all it gets me down really badly but I know any scrub type things make it worse and it’s so important not pick or touch it as it makes it worse and it spreads I do hope we can find something between us that works Iam in U.K.