MATEs FORUM

Evening all...

Sorry but I am still just returning to my somewhat (oldself) new normal, after my unintended collision w/ COVID...

Anyways, I am sure that you have at least heard of PRURITUS; even if somehow you remain yet to experience its unpleasantness...

A new drug has recently shown to be of some benefit for mastering the "ITCH" if indeed such a thing is entirely possible...?

I say that because, even tho' my Dx is Post ET / MF - I did periodically suffer from intense bouts of PRURITUS too...

However, in my case, it all but disappeared completely upon my commencement of RUX'... Almost... for some reason, every now & then, smaller events do still manage to antagonise me...

This article, may provide some hope for those out there unable to benefit from the "RUX'" Escape...

The SAMPLE of patients, is VERY small... However the results appear promising too... My recommendation is to Download & read the entire Paper...
Cited in the Reference below is the DOI: doi: 10.3324/haematol.2022.281639. Just copy & paste into your browser...

Best wishes

Steve


Omalizumab alleviates pruritus in myeloproliferative neoplasms
Anna Ravn Landtblom et al; 2023,

Chronic pruritus is common in patients with myeloproliferative neoplasms (MPN), particularly in polycythemia vera (PV). Pruritus is typically of aquagenic character, where an intense pruritus is evoked by skin contact with water, but may also include a stinging, burning, or tingling sensation. In contrast to urticarial disease, aquagenic pruritus is typically not associated with visible skin changes. It is most commonly localized centrally on the body: thorax, abdomen, back and proximal extremities.1 Pruritus in MPN may also be more generalized and be triggered by other factors than water contact. Pruritus is prevalent in PV, where 31-69% of patients suffer from chronic pruritus, and 15% report aquagenic pruritus of unbearable intensity.1 Pruritus also occurs in other subtypes of MPN but the prevalence and severity is not as well characterized.2 Chronic pruritus in MPN may result in a substantially compromised quality of life and lead to anxiety and depressive symptoms, as well as water-avoiding behaviors with negative effects on personal hygiene and social interaction.3,4

Several treatment options have been reported to alleviate MPN-related pruritus, including hydroxyurea, interferons, ruxolitinib, normalization of hematocrit by venesection, antihistamines, SSRI (paroxetine and fluoxetine), narrowband UV-B light, psoralen UV-A light (PUVA), and alkalization of bathing water.5 Interferons are described to have better effect against pruritus than hydroxyurea with a reported efficacy of 81%.6 JAK2 inhibition with ruxolitinib has also been reported to reduce pruritus.7 Interestingly, SSRI has been shown to alleviate symptoms in eight of ten described patients.8 Despite numerous alternatives, MPN-related pruritis refractory to current treatments remains a clinical challenge. In addition, pruritus may occur in younger individuals with low risk of thrombosis, where cytoreduction is not otherwise indicated, or in patients with intolerance to available cytoreductive therapies. Therefore, there is a great clinical need to find novel approaches to alleviate refractory MPN-related pruritus.

Omalizumab is a humanized monoclonal immunglobulin E (IgE) antibody, that binds with high affinity to free IgE and prevents receptor binding. Omalizumab is Food and Drug Adminstration-approved for refractory asthma, nasal polyps and chronic idiopathic urticaria. Here we describe a series of patients with MPN that were treated with omalizumab for severe pruritus.

We describe seven patients with intense chronic pruritus related to PV and essential thrombocythemia (ET) treated with omalizumab at the Karolinska University Hospital. The diagnoses of PV and ET were defined according to the World Health Organization 2016 criteria. The data presented were retrieved from medical charts. Complete resolution was defined as patients describing the pruritus as being completely gone, partial resolution as patients describing the pruritus being clearly reduced but not entirely gone.



REFERENCES

Landtblom, Anna Ravn et al; 2023. Omalizumab alleviates pruritus in myeloproliferative neoplasms
Haematologica. 2023 Jul 1; 108(7): 1968–1971.
Published online 2023 Jan 26. doi: 10.3324/haematol.2022.281639

After, not that long ago, saying I was symptom free, over the last month or so I've been struck by continual itching on arms and legs and it's intense.

Sometimes moisterizer can help - at least to the point of helping me sleep. Somebody recommended Vaseline Intensive Care. I tried an antihistamine with no luck.

I'll see my dermatologist for a skin cancer check tomorrow and my new haematologist on Thursday (for the results of my BMB and myriad of other tests).

Hopefully one of them can come up with something that will help.

Unfortunately I can't join you and the team on Sunday but I wish you a successful meeting.

Afternoon Peter...

Sorry to learn that, by the sounds of things, you've discovered Pruritus?

Unfortunately, it is often a common by-product of having an MPN. In my own short journey since Dx 2016. I possibly suffered from it more on both HU & Interferon-Alpha (B), the Interferon being the worst, in my case... Quite a few years back now...

The Pegasys' version, apparently has less incidence of same...?

After my BMB saw me reclassified as Post ET / MF, one of the very first benefits of being on Ruxolitinib (Jakavi) was the almost instantaneous disappearance of my Pruritus...

In any event, I do hope you find a solution... I cannot recall which Med's you are currently on, but I believe that it may have been HU, is that correct?

Having a chat w/ Mark, Katie, Merry, Warwick, & Leon... may help you shed some further light on some possible next considerations, on your part... (?)

Do let me know how you go w/ your BMB, & if possible... pls insist upon using the "Whistle Inhaler" ... has worked a treat on both my previous BMBs...

Best wishes Peter

Steve

This week I saw my dermatologist and Cecily now all the test results are in.

My dermatologist suggested QV wash instead of soap for the itch, and Dermol Therapy anti-itch cream. There are several types of this on the shelf in the pharmacy. (Pardon spelling, he had typical doctor's handwriting.) And Antroquoril cream for red itchy patches. Hopefully one of these helps with some people.

At the risk of hijacking this thread, I too have joined the Ruxolitinib club. Yesterday I found out that my ET has progressed and is now classified as MF. The BMB showed I have two mutations: CALR Type 1 and TP53. The latter is very rare and is bad news. I will continue on HU during my trip and start on Rux as soon as I get back.

Good evening Pete...

Firstly, thank you for Posting this "follow-up" advice... I too hope that it might help someone/ anyone that suffers from that damned annoying dreaded itch!

Unfortunately, I am yet to really hear of any real miracle work, in that field... Except for "Ruxolitinib" actually... as almost the instant that I commenced Rux' my 'Itch' almost totally disappeared... Every now & again, I do have some very small complaints. However, they are of a next-level minor nature...

Secondly, I am sorry to learn, that you now like me, have become diagnosed 'Post ET / MF'. I am also CALR (But Type2), & ASXL1+, which is another High Risk Mutation (HRM) like TP53 that is said to hold a poorer prognosis, in the general sense.

Having said that however, I am still here... defying those pundits & scientific researchers (soon to be replaced by AI writers).

Hopefully, you will not suffer from the bleeding problems that I went through at an earlier stage of my MPN journey... Because that was all a tad nasty really...

Anyways, hopefully... & like myself you too will find a friend in Ruxolitinib... In many ways, it has allowed me to function almost to normal standards, most of the time...

A few things to know Pete, you will also need to be commenced upon 'Valcylovir' anti-Virals... There are a few down-sides to Rux'... It induces 'anaemia' and places us at an ever increased risk of infection. Under Rux' our White Blood Cell count will nose dive, and the fatigue 'Roller-coaster' is often unbearable at times...

I have learned a few things that can help...

Mainly to do w/ 'Life-style' changes:

* Anti-Inflammatory diet
* NO Alcohol
* NO Added Sugar in anything
* NO Soft drinks
* NO Meat (personal choice)
* NO Processed foods
* Seafood (wild-caught preferred)
* Loads of purified Water & sparkling mineral water
* Largely adhere to a 'Plant-based' dietary regime
* And exercise aerobically mostly, some stretching (as often as I am able)

One of our members also provides FREE courses in Yoga / Meditation, should you ever feel the urge (?)

I am still ALWAYS battling thru my fatigue, but I just keep trying to push through it as often as possible... I almost always have a nasty sense of nausea; cycle thru periods of constipation followed by its cousin; always have a sense of body & joint aches that intensifies every cold season; suffer from chronic tinnitus; some vision issues; headaches are chronic, and I do my best to manage my Blood Pressure with natural supplements...

Every now & again I do succumb to needing stronger Pain-killers, however, I also do my best to avoid them whenever I can because they also create other issues associated w/ constant use...

Not sure where you are Pete w/ all of your symptom burden etc... However, I do hope that your journey proves to be at optimum for your manageability under Rux'...

Stay in touch & always feel free to reach out whenever you need to... That is precisely why MATES FORUM is here Pete!

Best wishes

Steve