Itching for answers.... thankyou!

[quanglewangle]

(Me = 80/JAK2 /ET/Hydroxycarbamide for 13years)

I am very grateful to everyone that has replied to my list of queries about itching/pruritis.

I have been aware for some years that it is a subject that has been repeatedly raised but felt that there did not seem to be a firm definition of cause or solution/amelioration.

Thankfully most of my other symptoms/side effects are not life-inhibiting and are often ignored or accepted as part of existing. The post was to highlight the itching that is on the increase and becoming annoying and I hope to nip it in the bud pre-emptively. What emerges from responses and background reading is interesting but inconclusive

Pruritis can result from various causes and even from the ET itself rather than its treatment.

Hydroxycarbamide does seem to affect the nerve pathways in various ways particularly skin with pruritis, pins & needles, numbness in extremities, peripheral neuropathy and erythromelalgia.

So far I have resisted the urge to request a change from Hydroxy to other popular treatments as, having read about them, I could simply be swapping one cluster of side effects for another.

Striking comments about the efficacy of some treatments such as Alpha Lipoic Acid and Beta-alanine sound interesting as do a number of responses citing Ruxolitinib (Jakafi). However the latter has its own long list of possible side effects.

So as long as Hydroxycarbamide seems to be providing its main function and platelets are under control, I guess that unless evidence of the efficacy of the other two solutions emerges I will keep watching for positive interest in them from my local NHS contacts (Haematology department in local hospital and GP).

P S As a retired pensioner living 50-60 miles away from Care Team/EP/MPN specialists in major centres I smile at the many enjoinders to seek more expert help/private help.

Thanks to you all!

[JediReject]

The only drug that halted my severe puritis and fatigue in its tracks was switching from 8 years of HU to Ruxolitinib. The joy of taking a shower or bath without the feeling of bitten by a thousand ants was life affirming, in the past at times I was almost reduced to tears with the level of discomfort on torso and legs. I learned to bathe gently with tepid water, strip wash, pat dry very gently, , try to keep cool and rest awhile afterwards. Ruxolitinib really was a wonder drug for me enabling me to feel the way I felt before I even knew Myelofibrosis existed. I had no real side effects apart from increased appetite which I didn't have a problem with because it wasn't a big deal for me to gain a few pounds vs feeling really well for first time in years.

The itching associated with an MPN and how debilitating it can be is not always easily understood or appreciated but I can honestly say that within a few days of swallowing my first Rux I no longer dreaded bathing or even showering.

Chris

[quanglewangle in reply to JediReject]

Thank you for that reassuring message.👍

[JediReject in reply to quanglewangle]

It's one of the stand out things I experienced since PMF diagnosis in 2006 such was it's impact. It never leaves you and even now I think of it occasionally when bathing.

[S031251 in reply to JediReject]

I agree 200% with everything you say about rux

[JP1952 in reply to S031251]

I also agree about the Rux. Pruritus dominated and ruled my life, it was unbearable. I switched to Rux for the sole purpose of stopping the itch and it did within 2 days. I have gained a few pounds but getting older and the fatigue of PV may have caused that anyway. I am very happy to continue to take Rux.

[MichaelS]

I agree with the previous replies. Rux' sent my spleen back to where it should be and in days the itchy/ pins in the body irritation stopped. That was 10 years ago and I never get the painful itching now or since I started Rux! Take care of skin cancers though. They are a menace and my haematologist has finally agreed that in my case, they are due to the Rux'. Apart from that it is a very useful drug and makes life so much more comfortable. Its good to see JediReject still active on here 😀

Best wishes one and all.

[JediReject in reply to MichaelS]

Hey Michael, , Thanks for the acknowledgement, , pleased you're still benefitting from Rux, you're beating the odds my friend, keep it up.Chris

[socrates_8]

Absolutely agree with all of that which has already been stated... My itching also disappeared upon taking Rux'...

Best wishes HNY All...

Steve

(Sydney)