METHOTREXATE (MTX) TRIAL - UPDATE...

[MPN-MATE Admin]

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, and 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, the other 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:

viewtopic.php?f=3&t=87

I will keep you all Posted as to the results as they continue to evolve etc...

Best wishes all...

Steve

[MPN-MATE Admin]

Hello everyone...

Just another quick weekly Update:

Week 1 Bloods – Platelets came down for the First time in 7-8 months from the 900s to 893

Week 2 Bloods – Platelets still in descent - from 893 - 832 (Hgb & Hct also returned just inside of normal ranges)

Still awaiting VWS Update to see if the Factor VIII has returned to normal levels, will know shortly I guess...


Next blood test in 2 weeks and will Update as to progress again at that time...

Thus far guys, this is proving to be a most positive result, and might well be an alternative treatment for those of us on Ruxolitinib with increasingly High Platelets...?

Stay tuned...

Best wishes all, stay happy & healthy...

Steve

[Merry]

Excellent results Steve! I hope this trend continues for you.

I am also joining the methotrexate trial. I was recently diagnosed with psoriatic arthritis to go along with my ET and Graves’ disease.

I start tomorrow but with monthly blood tests. As my platelets are within normal range and have been for some time I’m hoping I may be able to stop taking Hydrea. I’ll keep you posted...

All the best
Merry

[socrates_8]

Hey Merry...

Cool... yes and lovely to hear from you too...

I was just talking with Judy, about the Methotrexate on Voice (Piggie50), and Judy asked about how you might be doing because she also has RA, and it is interesting to see how each of us might respond to this in the fullness of time etc... Albeit that we each are just a tad different too ...

Spoke with Warwick today also... And I am preparing an attached email of supporting documents for his Medico to consider, because he would also like to lose the HU altogether etc...

Anyways, yes, I shall keep all of you Posted as more results come to hand...

Best wishes and have a memorable trip abroad Merry...

Steve

[KatieB]

So pleased to hear you are doing so well Steve and great to hear your news too Merry. This may be the answer for several more of us in time.

Best wishes,
Kate

[MPN-MATE Admin]

Hey Katie...

Yes, well as they say... "So far, so good..."

Let's hope that these results continue to excel in direction... I must say I am somewhat elated, and in the words of my specialist:

"You've cracked it Steve, let's keep this going for another two weeks and review again at that time..."

It would be such a wonderful thing if this might also mean that those who are presently taking HU, (and suffering from various HU caused complaints 'speculative of course'), might be enabled to cease HU altogether...

Now that would be something... ;-0)

Best wishes Katie

Steve

[MPN-MATE Admin]

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)

VWS Updates 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...


Next blood test in 1 week

Will Update as to progress again at that time...

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 ... ???

Best wishes all, stay happy & healthy...

Steve

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[KatieB]

Hey Steve,

Pleased to hear things are still going in the right direction even if your platelets are up slightly. Very small rise though,
Sorry to hear you had a day of severe fatigue. Certainly know what that feels like!
Good luck with the ride on Sunday. Hope you feel on good form,

Best wishes
Katie

[MPN-MATE Admin]

Morning Katie...

Yes, only a slight rise... But my anaemia and fatigue yesterday was like hitting a brick wall, with my limbs feeling like immovable roots & tree trunks etc...

Interesting to see my Hgb, Hct & RBCs all take a significant dive too... Hopefully, the FOLIC ACID, which I'd previously neglected to mention to you, will help re-elevate my energy before Sunday (?)

It shall be awesome if the weather plays along, and I'm able to create a few cool Pic's of the day's events, without being washed away... ???

Have an awesome day Katie...

Best

Steve

[SilverET]

Hey Steve,

Been following your Mtx trial with interest. I have wondered about this drug as an option for a while. Good that it has stopped your platelets a little. With the last small rise could this just be natural variation. Do you have little wobbles normally?
My platelets have been steady for a long time but have shown the odd higher level lately but they fluctuate a bit so telling my Haematologist not to jump the gun just yet and track it for a while. He is keen to try some chemo but I know I vary from test to test a bit sometimes. Fingers crossed you are on the way to something that works for you.

SilverET

[MPN-MATE Admin]

Hey Natasha...

Lovely to hear from you...

Actually, I was trying to contact you a while back when a girl from SA was trying to recruit MPNers from SA, for an MPN survey. However, in the end, I found her paper work sadly lacking, and had little confidence in her quest. Hence, I recommended against people participating etc...

Yes, the MTX trial... So far so good, as they say...

Just off to see my specialist this AM to see what my latest bloods are reflecting now I have doubled my FOLIC Acid dose of late... Hopefully, this will help pick up my reds which were still a tad lower last time around???

Yes, there is always some natural variation, and intense exercise can also produce an upwards trend too, I've found... On the whole, however, my anaemia is a tad better, with much better numbers being produced... But as you say, it can fluctuate quite a bit from test to test. They are weekly for the moment... Hopefully, once my Platelets are under 800pts, my VWS Type1 will also return to normal levels. Apparently, that is the theory on which we are currently operating... we shall see I guess... ?

I will write more on all of this shortly but right now I am running a tad late.. So talk more soon Natasha, have an awesome day...

Steve

[MPN-MATE Admin]

Hi all of you following my MTX Trial with Ruxolitinib,

Not sure but I am completely unaware of anyone else currently doing an MTX / Jakafi combination therapy... ???

My Platelets have come down again - 803

This the lowest they have been in quite some time...

I still am suffering from fatigue and anaemia, however, generally, things continue to edge ahead in the right direction thus far...

Double dosing my Folic Acid is obviously having some positive effect too...

Early days yet... However, perhaps we have discovered an alternate therapy to that of HU?

Next bloods in Two (2) weeks...

Best wishes all...

Steve

[KatieB]

Hi Steve,

Great to hear your platelets are still coming down. Interestingly enough, mine are too, on Busulfan. Like you, I am suffering with fatigue and anaemia. Not pleasant at all! It seems that whichever drug we take for MPN's, most of us end up with these two problems.

Very interested in your journey on Methotrexate as it does add one more option to the list. Maybe your body will adapt in time but it is disappointing that your counts are being affected in other areas.

My consultant has suggested that as soon as my platelets are within the normal range, I should come off Busulfan altogether for a few weeks in order to give my body a rest prior to my starting Peg.

Best wishes,
Katie

[MPN-MATE Admin]

Hey Katie...

Thanks for your Post.

Yes, all good news at the present really... My Reds & Hct are still a tad low, however, my Hgb is back up to 122 Yay!

If my Platelets are under 800 in two (2) weeks time, then theoretically, my aggregate VWS antigen is supposed to lift back up... Then I will be allowed to rebook my dental work that was just cancelled due to apprehensions of my bleeding out etc...

In any event, so far so good...

Nice to hear you are enjoying some similar success at the present too Katie...

BTW - I will make a Post shortly about the next Cafe Catchup. Michelle from the Central Coast, (also seeing Cecily), says Nov. 30th Or Dec. 14th (both Saturdays) would be good for her... What about you, are you able to make either or Katie?

Best wishes and be in touch again soon...

Steve

[Anag]

Hi Steve.
Yes the platelets are good news. Hope you are doing well with your biking! I finished my 5 day fast this morning. The first day was a bit difficult. (I kept reaching so something in the kitchen). After that it was smooth sailing until last nicht (when the body goes into autophagy). I hardly slept. Was wide awake and my heart was pumping and my brain running. Sleep 3 hours. Breakfast was a dream and was consumed slowly. I can’t believe I was disciplined enough to do this! Let us know how the CBD went. Cheers, Anag

[MPN-MATE Admin]

Morning Anag...

Congrat's on your success with your 5-Day Fast! Astounding and really well done ...

Papitations don't sound like fun...That must have been a tough one to achieve, not sure I could do that myself, and especially not at this moment... Need all my energy for exercise & cycling etc...

Yes, so far so good with the MTX... Not sure why you were thinking I would be trying the CBD anytime soon...(?) My first priority right now is trying to keep my platelets under control. Once that transpires, I am hopeful that I might try to reduce my Ruxolitinib dosage by 50%... That is my next hope in any case...

Have an awesome day Anag...

Steve

[SilverET]

Hi Steve,

Yes sorry I am a little sporadic in my checking of MPN Voice and MPN Mate. Depends very much on how I feel about it all and how my symptoms are treating me. Sometimes I just want to ignore it all for a while or I am waiting on seeing how the latest drug combos are going to work so I am absent for a bit. I still think a lot of my latest symptoms are drug related and not the disease itself but it's hard to prove when you can't just come off the drugs cold turkey without possible disaster. I've had some worrying neurological symptoms and that I think may be the Eliquis which I will be talking to my Haemo about soon. But then other times I am right for weeks without too much drama. i am also having a lot of visual disturbance but that could be the ET. My platelets have risen a little lately but still quite low for me compared to where they have been in the past. I am hoping it is not the start of a new rise. The mutated clones in my bone marrow have been quiet for a long time so I hope they are not ramping up activity now again. Only time will tell. I've decided to have weekly bloods to monitor for a while hoping it's just a blip and not a trend.

You did mention the possible survey of MPN patients by a researcher in SA. I had a quick look and didn't think it sounded like it had a lot of substance so decided not to participate in that one.
Glad to hear your numbers are heading in the right direction. I know a person on MTX for a severe arthritis condition and it seems to work really well for her without too many side effects. She just has to be careful not to drink any alcohol at all on a day where she has taken the MTX or she feels very ill indeed. But on the whole quite manageable for her.

Fingers crossed it all keeps heading in the right direction for you.

Cheers,
SilverET

[MPN-MATE Admin]

Hey Silver ET...

Nice to be hearing from you, and no need to apologise at all... but thanks anyways...

There are days for me when I am just feeling quite tired of it all... Usually, when I am heavily fatigued, and especially if I have just completed weeks/months of loads of extended Rides etc... & loads of Rejections in my attempts to promote my Fundraiser etc... It really is a relentlessly thankless task most of the time... But... it's what I decided I wanted to do for MPNs, (and what I signed up for), and I shall just keeping fighting the good fight, and keep chipping away at the bigger picture etc...

Yes, I actually found too many inconsistencies in the Girl behind that SA MPN survey. I was also kind enough to explain my reasoning to her as well... "Not enough care expressed in the detail..." was a big issue for me personally... And the fact that the aim of the survey itself was rather nebulous & vague, in my view...

I have also since discovered another MPNer in SA, of whom you both might like to share each other's details... at some point? Entirely up to the two (2) of you of course... Just let me know if you might wish to do so etc... (?) No pressure at all... & no bother for me either way... Just though that that way you would have each other to chat with if either of you ever needed to do so etc.. (?)

As far as the MTX is concerned, no problems at all with alcohol consumption as I have given it up completely some time ago now... I found it just made me feel much worse after the fact etc... I am much better off without it at all, in my view...

Rachel from MPN Voice, is becoming more interested in my positive results, as she has suffered with endless skin cancers through taking HU, (like many others I have heard of etc). In any event, it really is still early days for my MTX & Ruxolitinib combo' Trial etc...

However, there are some early promising signs... Platelets is the big winner with my Platelets now 803, (the lowest they have been in well over a year).

My anaemia is still not ideal, as well as my fatigue levels of late... However, I did coincidentally just complete my longest distance single 'Ride' ever clocking up 161.5kms... (seven hours in the saddle). It really was a tough ride and my body has showed me its displeasure with a serious of cramps and aches & pains etc...

In any event, I am still chipping away...

Will keep you appraised as to the outcome of the ongoing MTX Trial... fingers crossed...
I am hopeful that this therapy might also aid others with High Platelet regimes too into the future... (?)

Best wishes Silver (ET)

Steve

[SilverET]

Hi Steve,
Sounds like your treatment is working for you so far which is great news. And kudos on your ride. That’s a huge effort. I hope you have a really comfortable saddle. My bloke gave you the nod when I told him your ride time.
Thanks for letting me know about the other SA mpn person. I’ll leave it for now but always good to know it’s an option.
I’ve still been working on my running. I’ve been sick ( just a cold) for a few weeks so been unable to run but back into it tomorrow. Feel so much better for it too.
Anyway I hope things continue in the right direction for you.
SilverET

[socrates_8]

Thanks Natasha...

Hope you enjoyed being able to return to your running exercise regime too...

Best wishes

Steve


LATEST MTX TRIAL UPDATES

Evening all...

I was hoping to be able to Post my more complete & hopefully more Positive results... Unfortunately, for me, my Specialist is away & the results did not include my latest VWS findings... Hence, on that level I am none the wiser as to the theoretical or actual findings at this juncture...

However, my fatigue is still making me struggle periodically. It hits me like a wave, and I find myself very inept at that point... Although my renal function is said to be improving; I am experiencing pains in my left & right sides in my lower back. Not muscoskeletal, I do not think, as the pain associated is a low throbbing ache, and it appears just localised to those two areas at present, (meaning not in any way connected to other parts of my nervous system that I am aware of etc...)

A tad frustrating not to have my VWS results, as I am currently on a 'wait list' for a dental extraction that is not permitted unless the VWS returns to nominal levels etc... Or I first have stents inserted ...

However, and that being said all my other incidentals appear pretty good really, (see below):

My Platelets were: 823
Hgb: *124
Hct: *0.37
RBC: *4.0
WBC: 5.4
RDW: **17.2

Next bloods in two (2) weeks...

Best wishes all... Stay happy & well...

Steve

[KatieB]

Hi Steve,

Sorry to hear you have to wait for your VWB results.
Disappointing when you need a tooth extracted,

You seem to have one or two problems at the moment with fatigue and back pain. Are you sure it is not a bone pain? It may even be referred pain from somewhere like your knee. This seems weird but it happens on odd occasions. If your kidneys are in good shape, that is very comforting. All the rest of your results are good too.

I am having a rest from meds altogether at the moment. Platelets down to 356 but Busifan has taken down all my other readings too. Next blood test in a fortnight. So great to be free of drugs after 13 years , albeit a temporary solution,

Hope to make the next coffee catchup but will not know until the last moment.

Keep smiling. You are setting s great example to us all with your cycling and positive attitude.

Cheers,
Katie

[socrates_8]

Morning Katie...

As always you are a positive reinforcing agent in our MPN journeys... Do you realise just how refreshing that is?

Really, truth be known... I am constantly battling my own doubts and abilities...

My kidneys are reporting well in my bloods, however, I do have the occasional kidney aches which are a tad disconcerting too...

My back pains may be related to my exercise regime, however, it is really weird how it is affecting my sleep, and I must constantly sit up and fight off the urge to take painkillers (PKs) in order to have some respite. If I was to avail myself of the PKs I would not be able to ride well for a few days... and if I don't, my fatigue and energy levels remain very low... It is a fine art trying to maintain the middle ground etc... What there is of it that is...

Great news for you too that your Platelets are back in range, and you will now have a short hiatus from all Med's - Woohoo! What a grand idea & lovely thing to be able to do. I hope to emulate your feats in due course, of course...

I have a photographer chasing me this AM to do a small story in the local Hills & Hawkesbury Independent News Magazine... Pity I am not the camera friendly type... Very hard to have good snaps... Best I am incognito behind my riding shades & lycra methinks...

Anyways, onwards and upwards...

Have a lovely day Katie and... I hope to see you and Jerry at the upcoming Cafe Catchup. Spoke with Garry yesterday, and hopefully he will make it along too...

Best wishes

Steve

[SilverET]

Hi Steve,
Just a thought. If you suspect your back pain may be exercise related have you tried some stretches called the pigeon poses? I get some back/ hip pain that is actually from tight hamstrings and pressure on a nerve near the pili formis muscle. Really common for runners and I believe cyclists too. The stretches work wonders for me and instantly too. I sometimes get out of bed after waking with pain. Do them and I’m right to sleep again straight away. Worth a try.
Healthline.com has good pigeon pose stretches for sciatic pain.

SilverET

[MPN-MATE Admin]

Hey Silver ET...

Always wondered too... Why 'Silver' ET?

I shall have to add them to my aerobic stretching and lunging regime which does usually help a great deal, I am positive of that because when I am in too much haste, (prior to setting out), I really do notice the difference post cycle etc...

Not sure that these pains are of muscular origins... My renal results do bounce erratically up, down and back to normal... ???

Anyways, I shall persevere and try anything that might help of course...

Thank you...

Best wishes

Steve

[SilverET]

I could ask the same thing, Socrates 8.
I guess when I needed a pseudonym I considered that I wasn't a gold level MPN'er but I was at silver level and my particular flavour of MPN is ET. Silver is my favourite jewellery metal and I have a Russian Blue cat who is silver in colour and hence called Silver. So with all of that I thought it was something that suited me and that I might remember

[MPN-MATE Admin]

COOL...

Thanks for that wonderful exposition...

Mine, and just to reciprocate, is also explicable...

I once had an English teacher who detested me so badly she used to actually say "F*ing Socrates shut-up" apparently because I asked too many questions. She failed me in English in 3rd class (?) I was 9 yo at that time...

Fast forward, and many years later, I found myself teaching English as a 2nd language in West Sumatra, and my 37 students needed an email for me... Hence, Socrates was born... It was ironic in a sense... 8 is just my favourite number... I do like silver too...

Just returned from a photo shoot for a local monthly magazine at historic Bella Vista Farm, where I am hopeful of setting off from come winter 2020... Fingers crossed!

Best wishes & keep me Posted ...

Steve

[SilverET]

Hey Socrates 8,

That’s also a great story and I’m glad you ended up sticking it to that English teacher by teaching English yourself. I have three fave numbers. One of them is the number 8. It was my favourite childhood age.
I like when life does things like that. Strange coincidences that make everything seem just a little bit more interesting.
You will have to post a pic of the prof photos once they are published.
Have a good night.

Cheers,
SilverET

[MPN-MATE Admin]

Hey Silver ET...

Yes, good story really...

By the way, I always make Posts of pretty much ALL I am doing...

The 'Link' below, shows most of my Bigger Rides I do in training. Incidentally, as of today's last Ride, I have now already Ridden 10,000kms just this year in Training... I am suitably impressed with myself, and see this as a small benchmark of sorts along the way etc...

https://www.mpn-mate.com/cycling-traini ... -research/

At the bottom of that 'Link' Page, there are also Social Media Icons with Updates & information about where my next or last Stand is/was etc...

I have been busy...

And yes, I will make a Post of that Story once published. Hopefully, it will help my efforts... (?)

Beginning to feel a tad anxious these days, as there is still so much that requires organising, and in truth... I am still a long way from having all things sorted, resourced & prepared for my Winter 2020 start date etc...

All I can really do is just keep chipping away, and hoping for a small miracle of sorts to see it all fall nicely into place...

We shall see I guess...

Later...

Steve

[MPN-MATE Admin]

Morning everyone from a very smokey Sydney...

Just my latest Update on my Methotrexate (MTX) Trial, while also taking 25mg b/d of Ruxolitinib... (Jakafi)

Latest Results as follows:

Hgb: *122
Hct: *0.38
RBC: *3.95
WBC: 5.4
RDW: **16.9
PLATELETS: **847

VWS: All back to normal levels

Interestingly, apart from my Platelets rising slightly, all my other readings are almost identical to the last results of 2 weeks ago... That has never occurred previously to my knowledge...

There has not been anymore bleeding at all... (Low-dose Aspirin resumed). And although my fatigue is ever present, and that I do still have a few nights & days with bone & joint pain, mostly I am feeling pretty upbeat really...

The MTX will continue, and unless I have an issue of some kind, next bloods in Six (6) weeks...

Best wishes to you all for happy & safe Xmas break and an awesome New Year...

Steve
ox

[KatieB]

Great news Steve. Your blood counts look good even if your platelets have risen a little,

Hope to see you next Sat at the coffee ‘get together.’
Jerry is coming along too and hopefully, so is Jo, my daughter. Both trying to be supportive!

Best wishes,
Kate