After almost 8 weeks of 40mg+40mg of cortisone to try to get to grips with a chronic gvhd in the liver my finger tips are extremly sensitive, cracked and painfull. Does anyone have any tips on how to alleviate and improve things?
For information, the corticoid treatment isn't working well enough and since last week Jakavi has been started in an attempt to improve things - unfortunately the cortisone has to be used for a while longer to :
i)wean me off progressively
Ii)wait to ensure that the Jakavi improves things and i don't have too adverse a reaction to Jakavi (i'm on the lowest dose - 2×5mg per day but am Jak2 negative and have no spleen enlargement).
Thanks for any help
Crapaud
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crapaud
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I am not sure if this is entirely relevant to your enquiry, however, I have just posted a response that concerns another chronic condition that can have some very similar side-effects to those you have mentioned.
My fingers and finger tips have been very sore at times over many years.
There is a condition known as:
Erythromelalgia (EM)
Erythromelalgia is a rare condition that primarily affects the feet and, less commonly, the hands (extremities). It is characterized by intense, burning pain of affected extremities, severe redness (erythema), and increased skin temperature that may be episodic or almost continuous in nature. (The prefix "erythro-" denotes redness, "mel-" is a combining form meaning limb or limbs, and the suffix "-algia" indicates pain.) Although erythromelalgia typically affects both sides of the body (bilateral), it may sometimes involve only one side (unilateral). In addition, the disease course may be extremely variable from case to case. For example, in some individuals, symptom onset may be gradual (insidious), with the condition potentially remaining relatively mild for years. However, in others, it may have a sudden (acute) onset, possibly spreading and becoming severe over weeks. The specific underlying cause of erythromelalgia remains unknown. However, the condition is thought to result from vasomotor abnormalities or dysfunction in the normal narrowing (constriction) and widening (dilation) of the diameter (caliber) of certain blood vessels, leading to abnormalities of blood flow to the extremities. Erythromelalgia may be an isolated, primary condition or occur secondary to various underlying disorders. Primary erythromelalgia may appear to occur randomly for unknown reasons (sporadically) or may be familial, suggesting autosomal dominant inheritance...
... In addition, some researchers indicate that there may be three different subtypes of erythromelalgia, with most individuals affected by vasoconstriction followed by reactive hyperemia (as described above); some with primarily vasodilation abnormalities; and others with erythromelalgia secondary to conditions characterized by increased numbers of certain cells in the blood, such as platelets (thrombocythemia), and associated, excessive viscosity of the blood (hyperviscosity). (For more information, please see the “Related Disorders” section below.)
I had bad neuropathy in my feet due to hydroxycarbamide, however, once I was prescribed Amitryptiline it improved after a couple of weeks, but my feet didn't heal properly until after I came off hydroxy and started Anagrelide.
Have you tried a really thick emollient like P45 at night. Smother it thickly on your hands and wear cotton gloves? An old wives remedy for psoriasis is bathing soaking your hands in milk with a few oats added to the milk, there is something in the oat/milk mixture that soothes the skin. Hope you find some relief Jill xx
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