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... ???
I started Methotrexate for my RA 3 weeks ago , 28 mg, once per week and folic acid on the other days. I stopped the Hydroxy at the same time on my Heams advice. I had a blood test on Monday, the results of which are not back yet. I am anxiously awaiting! I think the platelets May be reduced, but heamatocrit not. If that is the case I will need to restart the Hydroxy. I am on fortnightly blood tests. I have PV.
Will let you know the results as soon as I have them.
Lovely to hear from you... Hope all's well in your world too...
Yes, I shall be very interested to learn your results...
I was tested negative for RA, however, it seems that there are some favourable results out there to suggest that MTX is useful for Platelet reductions etc...
Merry, in WA, has also just commenced MTX as of today as well... So yes, we shall all have to compare notes as we progress and see what evolves...
Whoops, I should have said I’m on 20 mg methotrexate. Once per week
I have just accessed my blood results online,I’ve not spoken to my Heam yet as I’m in Nice for a few days. In the last 3 weeks my platelets have gone from 428 to 662 and heamatocrit from .456 to .459. So MTX. Has definitely not brought my platelets down. I’m guessing I will have to re commence the Hydroxy. I’ve never had a problem with it, just didn’t want to be taking two highly toxic drugs if not necessary.
It will be interesting to see what happens with Merry. Does she post on this site?
I was going to PM you Mary once I had some results.
Hi judy, such a shame really, its like catch22. I know of people MTX as helped but they don't have an Mpn! Like you say you can't take 2 highly toxic drugs. Hope your consultants can come up with an answer. Atb, tina.🤗
Is Is possible to take both. My rheumatologist has two patients who have been taking both for 10 years. Maz e mailed Prof Harrison for me and she says she has had patients on both with careful monitoring.
Guess I’ll have to ‘suck it and see’ and keep a close eye on my bloods and liver.
Still early days yet to see improvement. That seems a fairly high dose., maybe they’ll reduce it according to your response. My husband is on 25mg methotrexate once a week. Hope it works for your RA (it usually does), and a bonus if it helps your MPN.
Thanks for this Steve, a really interesting experiment with methotrexate, I do hope it continues positively for you. Please keep us posted on your progress.
Thanks for this posting. Good for you for trialling! Fingers crossed for a continued response. I was wondering if the Methotrexate affects the red cells?
MTX apparently puts a downward pressure on all the blood cells. However, the daily Folic Acid, (except for the day the MTX is taken - once per week), must also be taken & works to lift the Red cells, giving us back some O2 to fight off anaemia & fatigue...
My fatigue levels do seem to have grown a tad, and there was a little nausea, my eyes seem to be watering, and I am more dehydrated than usual, (requiring me to keep up my electrolytes & Fluids), but overall... so far so good... :0)
Yes, fingers crossed in the hope that this continues to work for me, which might translate to something very similar for many others too...
I guess my platelets don’t like Methotrexate. Since stopping Hydroxicarbamide and starting MTX my platelets have gone from 406, 428, 662 and today 931! This was at 2 weekly intervals so quite a substantial rise!
It just shows how different we all are and how drugs affect us all in different ways.
I have left a message for the Heam to give me a call, guess this means will have to restart Hydroxy and take both drugs.
Hi Judy,so sorry to hear this,it must be so disheartening, I do hope being back on the Hydrea soon sorts the pesky platelets out.Did the Haemo also recommend you still take the Methotrexate at the same dose with it? Sending best wishes,tina.🤗
Yes I’m still taking the same dose of Methotrexate, a lower dose would not help the RA . In time, if the RA goes into remission I would be able to reduce the dose.
Well, firstly I am really sorry that the MTX has not been a positive experience for you and your platelets Judy... Your dose of 20mg pw is/was twice mine currently...
I have just had my third Bloods taken yesterday... Hence, I shall report back again after the results are in... hopefully by tomorrow...?
Yes, the mysteries of a person's chemical composition it's quite a fascination for me...
Hopefully, your Platelets will resume their less aberrant behaviour again shortly...
Just a thought Judy... Are you taking any Curcumin? I mention this because I am taking Curcumin every few days just to try to gauge if there might be any positive anti-inflammatory effect (?)
Anyways, enjoy the rest of your trip... sounds splendid!
I was taking curcumin, for most for the last 2 years. My heam knew I was taking it but didn’t think it made a difference to platelets. I cannot really comment about the inflation aspect. It certainly didn’t help with the RA this year. I stopped it when I started the MTX as the leaflet they gave me at the hospital said ‘ do not take herbal remedies or over the counter preparations’. I have since asked my rheumatology nurse and she said it is fine to take so I intend to start it again tomorrow. Hopefully the platelets will start to tumble now I’m back on the Hydroxy. I feel like I’m rattling at the moment!
Post by MPN-MATE Admin » Fri Nov 01, 2019 11:56 am
Hey everyone...
Latest weekly MTX Update:
1st Bloods – Platelets came down for the First time in 7-8 months from the 900s to 893
2nd Bloods – Platelets still in descent - from 893 - 832 (Hgb & Hct also returned just inside of normal ranges)
3rd Bloods – Platelets risen by 10pts to 842 (Hgb - 120, Hct - 0.36 & RBCs - 3.91) Hence, becoming more anaemic again...
VWS Update: to see if the Factor VIII has returned to normal levels: 1st 38%, 2nd 35% - Normal range 50-200 Apparently will NOT retest for VWS unless Platelets drop below 800...
This day found myself suffering badly from heavy fatigue, and my Haem' believes it's due to the MTX.
Will now start doubling my Folic Acid dose to see if I can pick up my energy levels again...
Sunday is my First Organised 82km Ride for MS with some of my Riding buddies who will also be supporting my efforts by wearing their MPN-MATE Riding Kit. Hopefully, the long-range weather forecast will improve ... ???
Yes, although only 10 pts is not too bad, and upping the FOLIC ACID might be an interesting calculated response too... (?)
The RIDE, (Sydney to the GONG), is mostly a coastal ride that runs down through the Royal National Park to Stanwell Tops, (Hang-glider heaven), then down to cross over Sea-Cliff Bridge and on to Wollongong...
Supposed to be quite a scenic adventure... Hopefully, the weather will play along and i'll share some pics of the 10,000 strong riders...
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Another update….high platelets….
