I was diagnosed with Essential Thrombocythemiain 2010, have been on Hydroxycarbamide ever since. A bit fed up with the numerous side effects of HU (Peripheral Neuropathy, Actinic Keratosis, Mouth ulcers, Pruritis, Erythromalalgia, flaking/splitting nails, anaemia, tiredness, shortness of breath, ) I looked at switching to Anagrelide but made no change as many 'side effects' seem to be common - or are 'side effects' of ET. (to be fair the last few can also be linked to my Coeliac Disease and Atrial Fibrillation)
The issue at the moment is the one that has crept up over the years and has been mentioned on this forum and I would like to get a few answers to understand its evolution and what we can do about it - pruritis/itching.
My itching has slowly increased over the years - why? It affects my upper arms and back in the evenings - why? in the mornings it affects my front thighs and/ or my chest - why? Sometimes it doesn't happen at all - why? Cetirizine seemed to help for a while but was not the answer so I recently switched to Fexofenadine and if it is helping it is not apparent - why? I have seen it suggested that itching can be a linked to JAK2 - is this true?
Whatever the cause why is there no protocol for ameliorating/controlling it?The Haematologist is only concerned about platelet levels apart from the first few years when he kept checking for spleen enlargement but doesn't check that any more!
I see mention on here of Beta Alanine; if indeed this can help why does my GP or Haematologist/NHS website not advocate it?.
In short it would be interesting to learn a bit more about this phenomenon - how many of us it affects? the degree of problem? parts of the skin affected? solutions if any? or research results - if any? treatments that work - if any (preferably prescribable)?
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Happy New Year and Happy itching!!
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quanglewangle
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there was a similar post to yours re itching a few days ago, itch allegedly occurs in 60% of MPN patients, beta alanine is worth a try, I found UVB phototherapy helped a lot as did aerobic type exercise, Ruxolitinib is excellent for itch but not prescribed often with ET
Like you had lots of itching on HU and took fenofexodine.Have now switched to peg interfon and have no itching!! Might be worth exploring with a mpn specialist.
Yes thank God alittle itching with the first dose but now ok.An upset stomach but hoping prebiotics will help with that.A lot of fatigue but still walking the dogs ,just have to pace myself
Some on the forum have found beta alanine to be helpful. The use of this supplement falls into the realm of complementary health interventions. Most traditionally trained doctors are not well versed in these interventions and are understandably reluctant to endorse them. Suggest that you consult with a Functional or Integrative medicine Specialist if you wish to pursue complementary health interventions. These doctors are more well versed in complementary health and can guide you to reliable sources for any supplements you choose to pursue.
While Jakafi is well known for its efficacy related to itching, it is difficult to access for ET. As Spanelmad suggests, another option to treat ET is Pegasys. Given that you are clearly hydroxycarbamide intolerant, this would be the other preferred treatment option to pursue. I was also HU-intolerant and found Pegasys both more effective and easier to tolerate; however, we are all different in this regard. It is surprising given your description that Pegasys has not already been reviewed with you
Suggest that you consult with a MPN Specialist regarding your treatment options. This is the best way to ensure optimal care. mpnforum.com/list-hem./
I have ET JAK2-ve. I also have neurofibromatosis, which means I can't take any meds for my ET. I suffer from awful itching too, esp on my neck, head and sides. I always put it down to the nf as that causes itching, but maybe not? I also get burning toes, which my haem team say is nothing to do with the ET, but I've read too many other people on here saying they too have burning toes
Morning to you I can offer no answers but only say it is like reading my own medical conditions and treatment . My Haematologist says none of my health issues are anything to do with my ET Jak 2 my last telephone consultation she asked which blood condition I had looked at my platelets and said all fine speak again in 2 months .
I am therefore trying for another second opinion at another hospital but when I rang to check an MPN specialist was part of the team I was told I didn’t need to worry about that and when I come for my appointment all will be explained ..
We all realise on this site that with these MPns a holistic approach is vital watching the specialists at the recent forum in London all chatting and learning from each other was heartening how we gain this in our community is the question. Just hearing you also have the same symptoms is reassuring and gives me courage to say again to GPs and consultants that this is part of my condition or due to my medication. As for splitting flaking losing nails and sore itching skin and hyperpigmentation the Gp I spoke to regarding seeing a dermatologist said I obviously had lots of sun damage so why was I concerned about additional areas of damaged skin .. I am really hoping a new team will have a new view . I have only been on Hydroxy for a year but that was because no specialist until gastroenterologist thought 8 years of raised platelets was a problem . I am under 7 other specialists. Keep informing and sharing L
I too have had issues with extreme pruritis. I am PV JAK 2 positive on Jakafi. As far as doctors being proactive in your care, it is not going to happen unless you stand up for yourself. We cannot afford reactive care since our conditions are chronic and unable to be “cured” at this time. I learned to be my own advocate, informing my doctor what I expected for care. I also read research papers from top clinics in the US and abroad to keep up with advances in clinical trials and new medicines. American Association of Hematology conferences are also a great resource of information.
I found a research paper that mentioned Alpha Lipoic Acid. ALA heals damaged nerve endings, allowing a great decrease in the itching and burning of the skin. Because our blood circulation is affected by our disease, we end up with thickened blood, compromised circulation in the smaller veins and capillaries, and damaged to nerve endings.
I discussed my findings with mynMPN specialist and told him I wanted to try it. He was neutral about it helping but agreed it posed no issues with Jakafi. Within a few days of starting the ALA, 600 mg per day, there was a decrease in the burning. A week or so later, the itching would occur after showering for 5 or so minutes. Now, about 4 months in, I do not have any itching, the toe and foot burning is gone and the redness I had is almost completely gone.
I do not know if this works for everyone but for me it has been life-changing.
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