Been a while since my last Post on Voice, and it's also 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
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Between AcqvWBD and clopidogrel I expect some unusual bleeding events might be expected, but that may not be what is going on with your fingers. I would wonder a bit about skin necrosis since that is a possible side effect of methotrexate, but that one is really reaching for a possible answer. It does not seem very likely.
About the only thing I would add is to suggest a comprehensive nutritional analysis. I would particularly want to know about iron levels, Vit B/folate, and magnesium. Given what you have been through recently, it is particularly important to know where you are with vital nutrients. Perhaps a full panel with all the nutritional bells and whistles would be a good idea.
It does sound like something went very wonkey in your body. Can see why toxic shock would be suspected. Hope you get an answer soon.
It's peculiar, and of course a concern. Intrestingly, I have suffered from this condition, (many years ago). It resolved itself after MPN diagnosis & the commencement of taking Low-dose aspirin, at that time. My nails had seen every kind of specialist back in those days. Both topical & antibiotic solutions all failed to provide any type of positive response. Yet, low-dose aspirin had them all but return to normal, within a month!
My specialist wondered about whether or not it was a form of Dactilytis? My research thus far has suggested that there may be a connection between "Dactilytis & Sickle Cell"?
However, there's not much literature out there thus far?
Acquired Von Willebrands Type 2 is complicated & a rare condition that is also poorly understood among so many possible variables, apparently(?)
My recent RBCs morphology revealed many diverse types of RBCs. Hence, I am beginning to wonder if there might be some type of Sickle Cell rarely reported upon etc.
The Toxic Shock? Is believed to be a strange reaction to the MTX. However, my fingers were already reacting well before the recommencement of MTX. Hence, no connection by my reckoning...
However, there may be a connection between taking the Clopidogrel. Hence, cessation for the moment might tell me something.
Interesting that you mentioned Iron Levels too... Mine are usually quite low. However, in one of my recent tests they were very High? This was during the MTX & Folic acid period.
Whenever one takes MTX x1 pw, they should also be taking Folic acid every other day. My MTX has ceased for the moment, next Blood results this Monday. Will be interesting to learn what my Platelets are now doing after their crash to 300s?
Thanks Steve, I always seek your wisdom & advice...
Hi, Steve. I don’t have any answers but I just want to say I’m sorry for what you’ve been going through. I hope they find the cause so you don’t have to go through that again.
Hi Steve, I can only echo Cindy's words as I cannot offer any insight into what's going on. It sounds like an uncomfortable and alarming experience and I really hope your team can get to the bottom of it. Best wishes, Jennie
Things are moving along nicely thanks. Obviously I'm not out of the woods quite yet but travelling in the right direction. Good luck with your journey 🙂
I’m so sorry to read about your symptoms. Possibly try Epsom salts soak for the bleeding as a cleanse to prevent infection. It is soothing (I foster cats and sometimes get scratches). Also biotin supplements have been helpful for my nails and hair. I wish you the best with all you’re dealing with.
Thanks for your messages. Just spoke w/ Specialist as my Platelets dropped to "69" which now means I'm at risk of further bleeding etc. Doing another follow up Thursday before considering Med's reduction of Ruxolitinb. Thanks for your Post.
Will keep all Posted as things develop further... May just be a Toxic Shock of sorts, & it will soon pass... (?)
Sorry to hear you have taken a tumble health wise after such a good run. Hopefully it's just a nasty blip that you can , with the help of the doctors work through. Down doesn't mean out, keep positive. 🤗🤗🤗
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