Essential thrombocytopenia : Does anyone have... - MPN Voice

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Essential thrombocytopenia

Doggy555 profile image
18 Replies

Does anyone have ridges on fingernails, or thumbnail separating from nail base?

Also, excessively dry, flaky skin eczema-like? It’s not the medication as I just was Dx withET and have not started it yet,

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Doggy555 profile image
Doggy555
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18 Replies
Mwalimu profile image
Mwalimu

Yes, I have ridges on my nails (v pronounced) and very dry skin but not flaky. I was diagnosed in 2011 and had this before medication. Since medication it has become worse. Sallie

Doggy555 profile image
Doggy555 in reply toMwalimu

Thank you for your reply. Do you have tremors and do you know if that is a symptom of Essential Thrombocythemia

The Dr said no but this also seems to have started with high platelets

Arty16 profile image
Arty16 in reply toDoggy555

Hi. I have ET and also have a tremor in my right arm. It was diagnosed as Essential Tremor am on meds to keep it under control

in reply toArty16

I do hope your GP tested your vit b23 and folate levels. These can cause hand tremors, plus a host of other neuro symptoms. Also make sure you get a copy of your blood tests as the range for b12 is very large and you may be in range but still not optimal. Loads online about it. Worth checking .

Arty16 profile image
Arty16 in reply to

I have low folate and b12 so have meds for that too. I have seen a neurologist as well and had it all checked. Even when levels were normal still have tremor. But with meds it is under control

in reply toArty16

When you say meds for low b12, I hope you mean B12 injections every other day until your symptoms go away or stop improving. That is the Recommened protocol for neurological signs and a hand tremor is definitely a neurological sign. If it’s not treated properly, and quickly, the symptoms can become permanent . FYI- A blood serum test for B12 is a pretty poor test as it doesn’t differentiate between b12 that you cells can use and b12 analogues which do nothing- other than make your blood tests look better than they are. You also need to increase your folate as these vits work together.

I hope your doctor has looked into why your vit levels are low too. That would be helpful as if it’s dietary you can change things. If it’s because of Pernicious anemia then you’d need injections for life. It’s important to know why . There are many other causes too .

Jenny_F profile image
Jenny_F

I also get dry skin

linphy profile image
linphy

Evening, I have ridges on my nails and my toe nails, I moisturise them but doesn't seem to help. I don't have flaky skin

Linda

ksos profile image
ksos

Yes, I also have ridges on my fingernails, some worse than others. No separation from fingers, though. The dry skin is in patches. I didn't have this prior to ET. Kim

Tico profile image
Tico

Hi Doggy, just a quick question, did your post title mean to say Essential thrombocythemia? As thrombocytopenia means too few platelets. In answer to your question the answer is yes i also have the ridges on the nail beds and the bad news is in most cases its a sign of getting old! ☹Only in a few cases can it mean more serious health problems. I often wondered about it myself and checked it out. If you don't mind me asking how old are you? Warm wishes,tina.x🤗

Doggy555 profile image
Doggy555 in reply toTico

I’m in my 70’s but it seems to coincide with platelets increasing. Yes Dx is Essential Thrombocytosis, high Platelets,also I noticed tremor in hand and lower jaw. Both were noticed before Dx,

Tico profile image
Tico in reply toDoggy555

I would definitely consult with your Gp regarding the tremors.warm wishes,tina.x😊

Karol_Rua profile image
Karol_Rua

Hi there, I'm not being picky with you but be very careful with your diagnosis name. If you have ET it is thrombocythaemia not thrombocytopenia which is the OPPOSITE...too few platelets. My GP kept getting it wrong when I was diagnosed 19 years ago and needless to say he's no longer my GP. The reason I'm advising you to be careful is that in A&E or Emergency departments etc there will be confusion and maybe inappropriate treatment if a doc thinks you've thrombocytopenia....

Best wishes Karol

PS my skin is always like sandpaper...it bleeds more these days on my knuckles etc as I'm washing my hands a little more and with stronger antibacterial soap...covid-19

Doggy555 profile image
Doggy555 in reply toKarol_Rua

Thank you for the correction. I was tired when I wrote the questions and will be more careful in the future

Tinkerbell13 profile image
Tinkerbell13

Hello, yes have ridges on nails and have ET but have been always told (nothing to do with ET by the way) that it shows a lack of zinc. Apparently, zinc and vitamin C are very sought after at the moment because of the coronavirus, so you might find it difficult to get hold of any. Best wishes, Tinkerbell

hunter5582 profile image
hunter5582

Yes to both issues with nails and skin. In fact, it is not eczema-like, it is eczema. There is a possible link to the ET if you are JAK2 positive. The JAK2 mutation not only increases hematopoiesis, but causes the overproduction of inflammatory cytokines as well. The excess of inflammatory cytokines is thought to be responsible for a number of the secondary symptoms we experience. This is an area where understanding is emerging and hopefully will be better understood in time.

As Tico noted, some of this is also just a sign of aging. Aging, hematopoiesis and inflammation are all linked issues - they have impact on each other. The good news is that this is all in research and understanding of it is improving.

Meanwhile, treatment for skin and nail issues is largely symptomatic. A medication like hydroxyurea will not help it. HU can actually make those issues worse, but does not for everyone. The things that work for me are: Maintaining a health skin moisture barrier (CereVe Cream), washing with a ceramide based cleanser rather than soap (CereVe Cleansers), Using scent/dye-free laundry detergent and fabric softeners.

Hope that helps. All the best to you.

23938112 profile image
23938112

Yes I have this too.

Doggy1903 profile image
Doggy1903

Hello. Yes I also have nail ridges. Hope you are keeping ok.? Maybe to mention next time you see you doctor or have a consultation.

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