UPDATED: SWOLLEN FINGERS AT CUTICLE?

[MPN-MATE Admin]

Afternoon all...

Been an interesting last month... Seemed to reach a point of excellent strength & fitness w/ my cycling & then "CRASHED"!

Not literally, however, my Platelets shot back over the 1M marker, all sorts of weird RBCs emerged; WCCs crashed; LDH 500s+ & massive fatigue took hold... (?)

Went back on the Methotrexate (MTX), to bring my Platelets back under 1M. Success, next bloods back in 700s, however, still weird RBCs & then my Glands (neck) swelled so badly, (I had no neck at all). Couldn't swallow or breathe through my mouth. Went on fluids only & commenced antibiotics. Next bloods (2 weeks), Platelets crashed to 300s, (Mine have never been that low in my recorded history?). Saw my Specialist, stopped taking MTX, doubled Folic acid & commenced gargling w/ bicarb soda to remove congealed blood lodged in my oesophagus... Almost 2 weeks before I could eat solids again.
Awaiting next bloods, but glands have retreated back to normal & the mucous in my mouth is also slowly returning to normal.

Apparently, I may have suffered from a toxic shock? However, will know more again after next two (2) bloods over this coming week...

However, there is another issue too... My digits particularly on my Right hand, (I am right handed). Have become very sensitive & also bleeding around the cuticle. The nails, (almost all) are both scored & pitted. This was a condition that I began to suffer from a great many years ago... & it was only resolved after MPN diagnosis, when I commenced taking low-dose aspirin. However, it has now returned & appears to be growing worse again...

These pictures below provide some closer description. My question of course is has anyone ever heard of this condition before or know of anything else that might help overcome it?

Important to also remember, part of this equation for me is that I also suffer from Von Willebrands Syndrome (Acquired Type2 – VWS), which means that my clotting protein levels do fluctuate, & obviously this may contribute to exacerbating the overall condition, in my view...

I was taking Dual Anti-Platelet Therapy, (Clopidogrel), that I have now ceased for a time to see if that might be a contributing factor?

However, no changes as yet... Please do let me know if anyone has any suggestions at all...

Thanks all, stay happy safe & well...

Steve

Fingers x2 & Thumb (RH)_2023.png (633.32 KiB) Viewed 7059 times

[Alkemist]

Hi Steve

Sorry to hear you have been having a tough time lately. Hopefully your blood results will throw more light on the cause.

The photo of your fingers reminds me of a problem I had with my toes around about the time I started on Pegasys. It coincided with the general itching problems I've been experiencing since. My dermatologist prescribed Eleuphrat ointment 0.05% (a corticosteroid) and within a few weeks my toes were back to normal. Always hard to know if it would have cleared up without treatment, of course. Might be worth enquiring about?

Sorry I won't be able to make the catch up this evening. Hope it goes well and regards to everyone.

Cheers Allan

[MPN-MATE Admin]

Hi Allan

Thanks for your response... It is all quite curious really, as I have had this issue before, (many years ago pre Dx of MPN).

Anyways, thank you for your suggestion of "Eleuphrat ointment 0.05% (a corticosteroid)". I shall certainly be looking into it...

I am hopeful that the cessation of the Clopidogrel might render some results? However, I am not confident doing so will change much.

In my reply to Hunter on MPN Voice. I mentioned a few other things too... My specialist wondered if it was some type of Dactilytis infection(?)

My research thus far, suggests that Dactilytis may be associated w/ Sickle Cell disease. There might also be a connection between Sickle Cell & my rare Type2 Von Willebrands Syndrome. However, I have not as yet any real substantive proof either way...

I shall simply continue to work the problem & ask my specialist about your suggestion too... (Eleuphrat ointment 0.05% (a corticosteroid)

Thanks again Allan, stay happy, safe & well my friend. I hope that your Pegasys' journey is improving things for you too...

I shall keep you Posted as to any further developments...

Best regards

Steve.

PS. BTW, my finger skin colour is not really quite so ghastly pink... This is a contrasting effect I used via "Auto Levels" in Photo Shop.

[KatieB]

Hey Steve,
So sorry to hear you have had such a rough time lately. It must have been a shock when things had been going so well.
My fingers get very sore around the cuticle area and nothing seems to stop the flaking skin. However, your condition seems to be quite severe.
I had no idea you had been so unwell but thought it strange that you had gone a bit quiet. For your platelets to drop to 300 and not to have been able to swallow due to blood clots, must have caused you a lot of concern,
Do hope things are looking up a bit now.
Will phone you when I get back from Sydney.

Best wishes,
Katie

[MPN-MATE Admin]

Hey Katie...

Yes, all a tad strange really... Just now awaiting results from my next bloods, to see what if anything has transpired w/ my Platelets since last. Will do another end of week to follow any changes that may occur.
Now I've developed back pain in the lower Kidney / Liver region of my right hand side(?) Quite a grabbing type of pain that's restricting my movement severely at the present...

Specialist thinks that this may have been a toxic reaction to the Methotrexate (MTX), I'd restarted after my Platelets first rose back over the 1M marker. That was when my glands blew up by the next day... ?

Still gargling with bicarb soda at present, as my mouth still feels affected etc.

Otherwise... I am beginning to feel fine again.

Would be happier if this pain in my back would alleviate somehow?

Speak more soon Katie...

Steve
ox

[MPN-MATE Admin]

Quick Update:

Just had next Bloods & Platelets crashed again – Down to "69" now...
Specialist does not want me to reduce Ruxolitinib, for the moment... Retesting Thursday for Friday Tele Con's (?)

I am surprised actually, my first thoughts were Reduction of my Immunosuppressed system?

Anyways, we shall see I guess...

Will keep you Posted

Best wishes

Steve

[MPN-MATE Admin]

Hi all...

Just wanted to share that my Platelets have returned to more normal levels for me, (642). However, all my RBCs are very low, as are most of my WBCs except for Monocytes which were really High(?)

It seems the general consensus is that I have suffered some type of Toxic Shock, & most likely a result from taking the Methotrexate - MTX(?)

Anyways, my fingers are yet to return to "My normal" however, they have stopped their bleeding for the moment!

Thanks to all for keeping tabs...

Onwards & Upwards hey! )

Best wishes

Steve