sweats and itching in MF

[artydutch]

what is the cause of sweating and itching in MF. I suffer badly with sweats and currently take

oxibutilyn. Has anyone received any other treatment for these side effects.?

[SolasChoir]

My husband has same (polycythaemia rubra vera) since 2004. Diabolical itch was especially bad after shower. Oncologist advised him take an extra hydrea tablet (capsule) an hour or so prior to shower - works like a dream! Hydrea is chemo, it does not suit everybody. Hubby on 2 a day for years (started on 1 every second day, then doctors increased it according to level of haematocrit. As time goes by, that is inclined to creep up, it took several years before he needed 2 a day, eveey day. Very occasionally has phlebotomy - maybe once a year? Phlebotomy safer than increasing Hydrea (also, if he ever really does need to increase the Hydrea, he is still on a relatively low amount. The other thing he found helpful - before increased Hydrea - have 2 hot water bottles at the ready and he would place them on itchy areas while lying down. It kept us both sane! PV itch so common among sufferers it is almost diagnostic (ok. I exagg.)

[artydutch in reply to SolasChoir]

Thank you For sharing your husband treatment regime. I am not on hydrea so far but keep the water bottles in mind in the cooler weather.

[hunter5582]

The deregulation of the JAK-STAT pathway caused by the MPN driver mutations manifest in a number of different ways. itching (pruritis) and sweats are two of them. Both symptoms are related to overproduction of inflammatory cytokines.

Itching occurs as a result of the activity of cytokines (small proteins involved in cell signaling) associated with myeloproliferative neoplasms (MPNs) and because a certain type of cell called a mast cell may release substances called histamines, which cause itching.

hoafredericksburg.com/what-....

Here is a bit on managing the pruritis.

mympnteam.com/resources/itc...

mpnvoice.org.uk/living-with...

The cause of MPN Sweating is similar.

MPNs cause the body to produce excess levels of cytokines, a type of protein that causes inflammation. Sweating is one of the symptoms caused by these increased levels of cytokines. According to Dr. Kuykendall, night sweats are more common for people with myelofibrosis and PV than for people with ET.

mympnteam.com/resources/nig....

I have experienced itching as a side effect of the Besremi I am using to mange PV. I am using Claritin to very effectively control this issue. I hope you find solutions that work as well for you.

[artydutch in reply to hunter5582]

I as yet not on treatment for MF. I also have systemic multi organ sarcoidosis and for this I am on methotrexate. My haematologist want to delay treatment for MF as spleen still ok. I should have had my second genetic test back today which looked at karyotypes and other prognostic genes ( I think) but the lab repeated the first one that found jak 2 and DNMT3A. Frustrating and another wait of 4 to 6 weeksThanks for explaining was causes the sweats. I am classed as intermediate but unsure of intermediate 1 or intermediate 2. I am keen to know my full prognosis with the Dipss plus score. I would like to know how long I can expect to be reasonably well and plan what I still like to do either sooner or later.

[Scaredy_cat in reply to artydutch]

I too have progressed to MF but have a large spleen. In the UK Ruxolitinib is restricted to more severe cases. I started it last year. Other than increased farting I've had no side effects so if the specialist says it's the best treatment for you, don't be put off by worries of side effects- you may be fine

[hunter5582]

Given your profile I am a bit surprised that the hematologist would want to delay treatment. Perhaps waiting for more information? I would suggest getting a second opinion on whatever decision you end up making from a MPN Specialist. That way you can be sure to make an optimal plan that you are comfortable with.

Wishing you all the best moving forward.

[artydutch in reply to hunter5582]

I have read that some experts think early treatment is better but there seems to be a variety of opinions out there. I have not fancied starting ruxo as this is likely to make me feel less well I was told. My haematologist is not a Mpn specialist but consults with colleagues who are. I am treated at the university hospital in Cambridge Uk. The only one recommended see d r Harris in London. I am breathless on account of sarcoidosis in the lung and chest and possibly lung. Awaiting echocardiogram.

[hunter5582 in reply to artydutch]

There are more treatment options than RUX, though that might be the best choice for you. The thing with RUX and all of the other options is that we are all different. Some people feel better when they take it. Some not. I did not do well on HU. I have done very well on Pegasys and Besremi. I feel better now that I am on that treatment.

Like you, I have co-occurring conditions (Neurofibromatosis Type 1, tachycardia, hx of brain tumor and more). That is when it is particularly important to consult directly with a MPN Specialist. I have two hematologists on my care team. A local hematologist who is a great doc but not a MPN Specialist. I also consult a MPN Specialist abut 2 hours away who advises on my care plan. This is a great arrangement.

I would encourage you to reach out for a direct consult with a MPn Specialist. I always get a second opinion on every significant medical decision. I actually had 4 opinions when I opted for brain surgery. I think you are tight that London is the closest location for a MPN Specialist. here is the list just in case you have not seen it recently.

mpnforum.com/list-hem./

Do please let us know how you get on.

[Leighcox85]

Hi I have mf for 13 years I have always had really bad sweats itching I find moisturisering your skin when having a bath or shower helps itching but the sweats only improved for me after I began rux they are back now as rux has failed I literally soak my bed I have to use wee pads I used for my kids and washing bedding daily but usually you do see a lot of benefits from treatment breathing better as spleen reduces bone pain fatigue they will all improve I have always had mine despite meds but they are more cope able and you learn alot from here and research and find coping mechanisms but in my experience it’s all part of it your team should use your symptoms to score you I do mine online once a week and it helps my doctor access my position good luck sweet x