Burning finger tips

[Charlieapple2018]

Hi sorry to bother everyone again but does anyone else get burning finger tips? My dose of Pegasys was increased in the week which is probably responsible, just wondered if it’s common.

[clubdino]

Maybe it's erythromelagia. It's a burning pain sometimes found in ET patients. Usually the body part turns bright red though.

[Charlieapple2018 in reply to clubdino]

My fingertips are red when the rest of my hand and fingers are quite pale.

[socrates_8]

Hey Charlieapple2018...

ET is caused my having an over abundance of Blood Platelets, and this in itself can produce very poor circulation. However, many of us take an 'Enteric-coated' Aspirin to try to encourage better circulation, and this can sometimes help to overcome that burning sensation in my fingers, and often in my toes too...

Diet, especially and anti-inflammatory one, is essential for maintaining good circulation, as we all age more, many of us also tend to become more sedentary... Exercise, consistently practiced might also help your circulation...

Just a thought...

Best wishes

Steve

(Sydney)

[Charlieapple2018 in reply to socrates_8]

Thanks Steve, I can’t take Asprin at the moment as I’ve got Acquired Von Willebrands because my platelets are hovering around 1500.

[socrates_8 in reply to Charlieapple2018]

Hey again...

Understood, in fact I am being tested for VWD myself tomorrow... and my platelets are consistently around the 1Million mark...

Nevertheless, the 'Enteric-coated' aspirin is not harming me at the present, as far as I am aware at least...

Charlie, what about the anti-inflammatory diet & exercise that I mentioned...?

Steve

[Charlieapple2018 in reply to socrates_8]

I need to properly research the Mediterranean Diet it been mentioned here a few times. I’m fairly active; I do Yoga, Pilates swim and walk a dog regularly throughly the week and this sort of exercise distracts me from the burning finger tips but doesn’t ease them really. I’m hoping it will pass as I get used to the new dose.

[Charlieapple2018 in reply to socrates_8]

Oh in response to the asprin part, I’ve been having bleeding episodes which means no asprin for me.

[hunter5582 in reply to socrates_8]

FYi - there is some recent research indicating that Acquired von Willebrand Disease can occur with platelet levels in the 800Ks. Also that it is much more common than previously thought. Glad to hear you are getting it checked out. FYI2 the standard vWB panel is not enough to establish the diagnosis. Should also include vWB multimers and vWB propeptide. Sometimes an ELISSA panel too as I recall. I actually had to look up the correct protocol for my hematologist as he did not know it. Also had to find a lab to do the extra testing as their lab did not do everything. Hope you get good news ASAP.

[Charlieapple2018 in reply to hunter5582]

Thanks Hunter, I tested positive for aVW in March, it was one of the elements that made my Haematologist start treatment.

[socrates_8 in reply to hunter5582]

Hey hunter5582...

Thanks so much for your insights here on vWD, and the relative testing procedures etc...

Yes, due to the exorbitant costs, I am starting with the Two (2) basic testing regimes of:

* Von Willebrand factor antigen.

(This test determines the level of von Willebrand factor in your blood by measuring a particular protein).

* Ristocetin cofactor activity.

(This test measures how well the von Willebrand factor works in your clotting process. Ristocetin, which is an antibiotic, is used in this laboratory testing).

The FACTOR VIII – Test is restrictive financially at the moment here in Australia. However, one step at a time I guess, if nothing shows up w/ these first two tests I can always revisit etc...

Thank you Hunter, and reading about what you have personally been through is inspiring for me too... So thank you for sharing your story ...

Very best wishes, and I hope you are well on your way to a speedy recovery, but as you say... w/ patience...

Steve

(Sydney)

[hunter5582 in reply to socrates_8]

Sounds like the standard vWB panel. You have to start there along with checking prothrombin times ptt/apt. This is not definitive for Acquired vWB however. Acq. vWB presentation is different than Congenital vWB - diagnostic criteria are different.

I suspect there is actually a continuum of altered coagulation function in which you can be somewhat more likely to bleed than clot, but not have a full blown diagnosable vWBD. That is where I seem to fall. My vWBF and/or factor VIII can fall below norm, particularly when platelets get above 700K, but I do not seem to have the full blown Acq. vWBD. The MPN specialist took me off aspirin after reviewing my case saying my risk for bleed was higher than risk for a clot. (I am JAK2+PV Age>60, mutant allele burden 25%, mild presentation - no hx of thrombosis after30+ years MPN - originally ET+). Not a standard tx protocol, but seems to be working for me. With the hemorrhagic brain tumor, I suspect no aspirin was a good thing!

I have had an "interesting time" in the last couple of years - as in the Chinese Curse re. Interesting Times. Have made it due to a bit a perseverance and a lot of support from family, friends and the folks in this forum.

All the best to you. Hope you get answers ASAP.

[socrates_8 in reply to hunter5582]

Cheers Hunter...

Thanks again for your insights. I will try to keep you informed as to the outcome etc.

Yes, I believe that I am also more likely to bleed than clot. Anytime I scatch myself it is nigh impossible to stem and cease the bleeding by conventional means, and it can also restart again very easily too...

... However, having said that, I have already suffered from two (2) suspected TIAs...

In any event, hopefully, something will come of these test results... (?)

Best

Steve

[hunter5582 in reply to socrates_8]

It is really confusing sometimes. In addition to the hemorrhagic brain tumor, I have also have some cortical flairs that may be age related mild ischemic events. The neurologist thinks these are "age-related" as opposed to "PV-related" based on the size and appearance of the flairs. I also have some flairs on the MRI that are Neurofibromatosis related. Trying to figure it all out is a might perplexing. The MPN Specialist and my regular on-going hematologist don't agree about the aspirin and hydroxyurea, so I went with the MPN expert and my own gut and discontinued both. Phlebotomy only for now.

Of course, all of that was not "interesting" enough. two weeks before the brain surgery, my regular hematologist called to tell me "we have been over-phlebotomizing you" and my iron levels were so low that they could not even measure the Ferritin levels. Once again, the two hemo-docs did not agree what to do. SIgh.

Regardless - please do let us know how your von Willebrand testing goes. I hope you have found an real MPN expert to work with since many hematologists don't really have experience with MPNs.

[socrates_8 in reply to hunter5582]

Hi Hunter...

No, unfortunately for me, (& much like yourself I suspect), I am my own best advocate, and continually work proactively to better my MPN, and my general health overall...

Sadly, in the Australian context, (when dealing w/ MPNs), Australia is lacking, and it may be sometime before we have even just a handful of dedicated MPN specialists...

It is a problem of an 'economy of scale' thing I am sure. Australia's population is only 25M. That, and the relatively recent discovery of all the 'MPN Driver' mutations simply means that the majority of us are still reading the 'Tea leaves' from the 'Tip of the Iceberg', in my view...

But, every journey starts w/ one step at a time, does it not?

Of course I will keep you up-to-date when my results are forthcoming, and please also feel free to join our Australian FORUM too...

mpn-mate.com/

mpn-mate.com/forum/viewforu...

Best

Steve

[hunter5582 in reply to socrates_8]

FOUND IT! My PC and Laptop both crashed within weeks of each other and I lost a bunch of my Favorites. hematologyandoncology.net/f...

This is a link to the single best explanation of how to do the diagnostic array for Acq. vWB that I found when I was looking for myself. I used this to show my hematologist what testing was needed.

Here is another great link to patient recommended MPN docs all over the world. Seven are in Australia mpnforum.com/list-hem./ . 1 in Kogarah, 1 in Adelaide and 5 in Melbourne. Not sure how far you would have to travel to get a consult, but I found it worth the effort.

Hope you get your answers soon.

[socrates_8 in reply to hunter5582]

Hey Hunter...

Thank you for sharing all of that. The article whilst quite a complex read for one of my lay-person ability, simply describes quite a complex ailment of multiple possible cause. The testing of family is also a step too far for me at this juncture. However, I am presently awaiting the results of the First two (2) tests before contemplating any additional running of tests, and I also noted the following statement in the article you flagged on VWD:

"Among the 186 cases collected, which represent the largest case series published so far, the success rate in controlling bleeding was reported to be 32% with the use of DDAVP, 37% with VWF-FVIII

concentrates, 33% with IVIG, 19% with plasmapheresis,

19% with corticosteroids, and 35% with immunosuppressive

agents. These findings again reflect the heterogeneous

nature of aVWS and its etiology"

As I am already a patient of an Immunosuppressive regime w/ Ruxolitinib at 25mg b/d, it might well prove that my treatment regime could be masking effects... (?) My Hb does cycle up & down but rarely if ever below the 100 mark...

Nevertheless Hunter, and as you previously mentioned, quite a complex condition indeed...

Thank you also for the reference Link to MPN doctors in Australia. Through my Fundraiser, (MPN-MATE.COM), the Funds that I am hopeful of raising is for specific MPN research to be undertaken here in Australia by the Peter MAC Cancer Foundation in Victoria, by Dr Kate Burbury, of whom is one of the MPN specialist on your provided list of MPN doctors etc. Thank you so much again.

However, I should have already Posted that Link of my MPN Services Page, and will do asap!

Thanks so much Hunter...

Best wishes

Steve

[JackLina]

Sorry. My symptoms are just the opposite. Dead fingers and freezing cold hands that can only be revived with immediate warmth.

[socrates_8 in reply to JackLina]

Hey JackLina...

This also sounds like a problem of poor circulation, in my view...

Same things apply, as I have mentioned here to Charlie... Good healthy, anti-inflammatory diet, and consistent exercise works for me...

If you are taking Aspirin, it can cause internal bleeding, unless it is 'Enteric-coated'

Steve

[JackLina in reply to socrates_8]

Hi thank you. I cannot take aspirin for exactly the reason you mention. I do take clopidogrel (one stoke and many TIAs previously) and Pegasys 45mcg. I get every side effect going but it' worth it. At the last count I was in normal platelet range. All the best.x

[Charlieapple2018 in reply to JackLina]

Glad to hear it’s working and it’s all worth it!

[socrates_8]

Good to know Penelope...

Happy to learn that you at least have your bloods back under control...

Steve

[Karol_Rua]

It's likely to be erythromelagia but as a consequence of your MPN, not the medication...i suffer from it occasionally but dont take hydroxyurea or not on Pegasys

Karol