Post by MPN-MATE Admin » Wed Oct 16, 2019 10:21 am
Morning from a not so sunny Sydney everyone...
Back in September, I posted an article relating to a drug that was primarily used to treat inflammation in people diagnosed with Rheumatic Arthritis (RA). That article pointed out the results of Three (3) human MPN Case Studies, and those results were enough for me to want to see if Methotrexate (MTX), might resolve my rising platelet counts without having to resort to taking HU, as HU is definitely not for me...
My diagnosis is Post ET / MF, CALR+ Type2 w/ ASXL1+ (HR), & Von Willebrands Syndrome (VWS) Type1(?).
Over the preceding 7-8 months my Platelets had started rising again and remained stubbornly in the range of 900-1M, I was feeling some adverse effects, and more than a tad concerned that as long as my platelets remained at those levels I would remain at risk of having another TIA (minor brain stroke), and I've already had possibly two (2), and don't want to take such risks etc...
One of the main reasons that I started MPN-MATE.COM was for medical fraternity Awareness, and especially so with hoping to eventually see ever more MPN specialists in the Australian medical ranks. However, another main reason was to hopefully see, (in time...), a more complete set of medication alternatives, as we MPNers only ever seem to have the same few options, and we do of course realise today that the preferred 'frontline' treatment of 'Hydroxycarbamideurea' (HU) comes with a unique set of unwanted side-effects like mouth and leg ulcers that will NOT heal unless one ceases taking HU, and that in turn can cause a 'Catch 22' if like myself you suffer from very high platelet counts too...
So, the plan was/is to trial a weekly Low-dose (10mg) of MTX, followed the next day with taking Folic Acid (FA). The FA is supposed to help stimulate new red blood cell growth, and the MTX is meant to suppress such growth by reducing the 'Inflammation'...
In my body, I can always feel the effects of High Platelets, and it creates some mental loss of acuity, and produces a type of peripheral aura around my vision...
Because I do have VWS, there is less of the required protein that helps my blood to coagulate (clot). However, taking aspirin, (as directed over these past three (3) years might have been the reason why I keep having some bleeding events. Once diagnosed as VWS Type1, it became apparent that I would need to stop the aspirin while trialling the MTX...
My specialist believes that I have the Acquired Type of VWS, as opposed to the genetically occurring condition, and she believes that as my platelets go down, my VWS levels should rise again as a direct consequence...
Happily, my first blood test results have shown a small but significant reduction in my Platelet counts, and for the first time in 7-8 months they were below 900 (893). Yes, only just, but I could instantly sense that they had receded as well. Hence, if I was a gambling man, I might take a wager that they are still dropping, and the next test on Friday should prove my hypothesis...
The VWS test takes a bout a week before I will have a result...
If this does indeed work, then perhaps we have found another alternative to taking HU... ???
Here is a Link to that previous article:
mpn-mate.com/forum/viewtopi...
I will keep you all Posted as to ALL of these results as they continue to evolve etc...
Best wishes all...
Steve
PS. Just attended my 2nd Annual Local Fair, and am planning quite a few more too...
Another update….high platelets….
What is the maximum safe dose of hydroxyurea/hydroxycarbamide?
