Hello Mostew, sounds like conversation with your Haematologist would be good. The uptick is not very much, but if you feel symptoms are worsening I am sure it would be reassuring to discuss options with your medical team.
I have Raynauds as well as MF, and was getting pain in my hands due to the circulation, and I got some fingerless gloves for arthritis, and I have found that I feel a lot better if I avoid getting cold extremities..
Others on the site can probably comment on medication as I remain on aspirin currently.
Keep in mind that a jump from 912 to 968 is not that much. Platelets cycle throughout the day as much as plus-or-minus 50K. These two readings are within the expected range of normal platelet fluctuation.
Yes, your platelets are definitely high as 400-450 is the upper limit of normal range. But it is the trend over time that matters, not a single reading. So I think many physicians would describe these two readings as “stable”.
My specialist told me he doesn’t consider two readings “different” unless the difference between them is closer to 100.
Hi Mostew, I agree with Mrs Average. I think it best to talk to your Haematologist with a view to medication. I have been on Hydroxycarbamide on and off now for 3 years since ET diagnosed. My platelets were at 800+ at highest and Hydroxy brought them down quickly. They now seem to be stable at 273 or thereabouts. Good luck in your decision. Regards Fran
Yes, up to now my other blood tests are all fine. I do have minor side effects and also just got swelling feet and ankles which I think is a rare one. It’s so difficult to make up one’s mind.
Azaelea - I had very, very bad foot swelling. Could not wear any shoes at all. By accident I found that chicken bone broth basically sent it away. I went to every foot specialist before finding it was related to PV (erythromyalgia). I started with 3-4 c a day for something else - but the foot issues went!! From time to time I find I also need some magnesium (spray on) and peppermint essential oil (rub on).
The 'experts' had no answer at all for my feet. I went to every one within a 100 mile radius (call it desperate). In the end I was told I was getting 'old' (59) and I should expect pain.
I had to find something for myself - but did so purely by accident. It found me.
NZ_Max thank you for your remedy for foot swelling which I shall try. I suppose it is home made broth with chicken remnants? I did read that it can be a rare side effect of Hydroxy. I have ET Jak2+ .
yours may be different to mine. I did not get a diagnosis until after the PV one, as they found it when looking through associated PV things.Anyway - the recipe. I bribed our local butcher into selling me his 'rubbish' after he boned out chickens. All sorts of bits, and when he does not have anything I go to a grocery store where I can pick up free range chicken carcases.
2kg chicken bits, 2 onions, 2 sticks celery, 2 carrots, 1/2 c apple cider vinegar, 2 tsp peppercorns, 2 dsp salt. All into a large slow cooker. Bring up to 80C (do purchase a thermometer) and then I turn the slow cooker to warm (NOT low). It stays at about this temp, which does not destroy goodies and also keeps it so that it will gel till cooled. I leave it there from 6 - 24 hours (depends how well I am feeling, or what else I have on). Strain. A lot of fat will come to the top which I leave there for a good seal.
Then - because I am frugal (mean??. mingy - but it is often done) throw out the veges, put bones back into a smaller slow cooker (I have many, it is how I survive) put in 1 of everything (but 1/4 c acv) and repeat. Because it is a smaller pot the yield will not be as much - but the goodies still all there. (and interestingly this smaller pot needs a tea towel over it to keep it at that temp.
Sometimes I add chicken feet, or seaweed.
Drinking by itself is a real treat - but then think gravy, soup (replacement for water), cooking rice (absorption method) .... On a trip overseas I was desperate to keep having this - so I dehydrated a whole lot and took that with me as an 'instant' drink in hto to warm water. Worked well and I was able to keep walking!!
Thank you so much for giving me all these instructions. I was going to use the chicken carcass from our meal, not raw bones. I will try this and see how I get on. I don’t think mine is the same as yours as I don’t , thankfully, have any pain . If it was Erythromelalgia I would have pain. My Haematologist spoke of arranging for me to see a Specialist in Lymphodema which might be followed up now we are slightly better with COVID. I really appreciate your thoughtfulness. Kind regards Fran
I have been on hydroxy since 2006, with a break in 2018, this caused my platelets to rise to nearly 900 which caused blood clots and a heart attack, I had 2 stents fitted and back onto hydroxycarbamide again. My platelets are still high which is worrying.
The main danger with ET is, as I understand it, blood clots and I believe the risk increases with age. Do talk to your haematologist about the different options, you can still live well on medication and not everyone gets side effects. I was fine on both Hydroxycarbamide and Anagrelide. Interferon was more of an issue but the effects were controlled with Paracetamol.
I understand how intimidating it can be to have to commence medication. I was diagnosed just over 2 years ago and as my platelets were rapidly rising, 1200 at their highest, I was put on medication straight away at the age of 42. I now have one Pegasys injection a week. This (as well as a short spell on Hydroxy)has brought my platelets down to within the 200’s and my Haematologist tells me my blood is beautiful! This has given me huge peace of mind and it’s wonderful not to have the stress of rising numbers at every appointment. I have few side affects thankfully. Of course I’d rather not to have to medicate but I feel for me it has been the best course of action. Sending love x
I do. CAL-R mutation. My platelets were steadily rising so even though it’s normal practice to medicate when platelets get to 1500 it was safe to assume mine were going to get there fairly quickly. Pegasys is considered the gold standard treatment but is slow acting so unfortunately I had 6 months of Hydroxy as Pegasys alone wasn’t reducing my numbers.
I was told it was the gold standard in treatment and because of my age (42 at time of diagnosis) the best option of the alternatives, Hydroxy specifically, is a form of chemo and is toxic and not ideal to be on long term. If I was to live to normal life expectancy, 40 + years of chemo isn’t a good idea. My understanding is that it is an expensive drug and people with previous mental health conditions such as depression may be contraindicated. They have great information on all of the treatments on the MPN Voice website but I’d absolutely talk to your Haematologist about it.
Yes, all other tests are great. My Consultant considers my condition to be very stable so I’ll be going on to 6 monthly catch ups soon which is brilliant as it was fortnightly when I was first diagnosed. It was a very scary time and I’m very grateful that I don’t have that constant horrendous worry hanging over me any more. I’m aware that as I get older things may change but for now I’m happy that one injection a week is keeping my results where they need to be.
A few key points regarding thrombopoiesis. It is normal for platelet levels to vary from day-to-day based on what is going on in your body. Sometimes by as much as 100K per my hematologist. Variance from 916 to 968 in a two month period is not clinically significant. There is not a corresponding change in risk based on that level of elevation in platelets. The concern about elevation of thrombocytosis would be if it was steadily increasing over time, not just a single CBC.
Since you are a member of the age>65 club (welcome to the the club) you are considered to be at higher risk for thrombosis. You are also at higher risk for hemorrhage from the aspirin due to age. I must say membership in this club is not all it is cracked up to be, but it does beat the alternative!
Bear in mind it is the symptoms you actually experience that matter most. If you are noting an increase in the symptoms that accompany ET, that would be a concern. The reality is that our risks do increase as we age. With ET, the risk of thrombosis, microvascular events, and hemorrhage are present and increase with age. Taking all factors together, the decisions you make now may need to be different than what was best several years ago.
If you do decide to move in the direction of standard MPN meds. suggest you consider all of your options. Just in case you have not seen them, there a a couple of references below. In the USA, none of these meds are FDA approved for ET, but they are in common use. You likely already know about hydroxyurea, PEGylated Interferon, Ruxolitinib and Anagrelide. I am sure you can make a good decision if you decide it is time to move in this direction.
I stoped worrying about it . I created a chart and noticed they go up and down , they creep up to 1000 and then drop to 850 . Same with my WBC and HCT . Some times my HCT will be 45 and I will wait for a month and they will go to 42
It’s a tough call and as others have mentioned it’s the trend in your counts, not one off fluctuations either way that matters.
Like you I stayed on aspirin only and held off starting any other meds as long as I could but a rising trend over the course of a year that saw platelet counts of around 1,000 becoming my norm and turning 60 made it sensible to take action.
I’ve been on Pegasys for nearly 6 years now, with no significant side effects and it’s very easy to use - I now just inject a maintenance dose of 45mcg every 4 weeks as my platelets are very stable in the 280-330 sort of range.
With hindsight I’m very glad I took the plunge and started Pegasys rather than running the increased risk of thrombosis with rising counts and age.
I suppose by looking at the trend over the period you have had ET you can predict what your levels might be say in five years. My next blood test is in June, and I plan to do that then, as my haematologist says they same as everyone "it's the trend that counts". Well, my trend, even taking into account the probable fluctuations, is definitely up, even though she may say it's "stable". But in my case I have to watch my hemoglobin as well, because that trends down. But what matters is always how you feel.
Hi there. I expended a great deal of angst in the ‘to medicate or not to medicate’ debate. With hindsight it was simply not worth it.
Admittedly my platelets were a lot higher than yours and I was having regular venesections which were becoming tiresome but I was still only in my fifties. I had this goal in my head that I would stave off all drug interventions (or at least a conversation about them) until I reached the magic sixty (now 65) or my platelets climbed beyond 1500. I thought it was better to manage the inconvenient symptoms for as long as I possibly could than to start pumping my system with hard hitting drugs.
The reality is when my platelets hit 1700 it was a no brainer to start drug treatment. The benefits far outstripped the very real risks of continuing untreated.
I started on HU (with a good deal of trepidation) but the results were remarkable. My numbers tumbled. I felt SO much better. Far more energy. That clampy head feeling you describe disappeared. I felt I’d begun to get my ‘old self’ back. And really, I’ve had no side effects. I cover up in the sun but that’s no bad thing - I shall have the last wrinkle free laugh:)).
So, definitely have the conversation with your haematologist. And perhaps keep an open mind? You might be surprised by the possibilities. All the best.
Hi I was diagnosed with ET at 65 and my platelet reading was over 1000. My Consultant told me that after 60 medication, more than aspirin, is required as strokes and heart attacks become more of an issue. I, reluctantly, went on Hydroxy and aspirin and overnight, almost, felt better. I was told the aim is to keep the platelets down to a normal reading, not over 500. I have the drug tweaked occasionally if my red or white blood cell readings fluctuate. I think at your age you will be encouraged to take something more than aspirin. The advice might vary but it’s always best to talk to and listen to the experts.
Yes my Consultant was keen for me to take meds right away . But conventional medics don’t consider the individual . As you say it’s age they look at . So someone who is not considering their diet , is stressed and has other conditions MAY be more at risk than me at same age
I changed consultants and she agreed to wait til platelets over 1200. But I would start meds over 100 as don’t want to gamble to much .
I think you are extremely lucky to cope with et with platelets that high. I know in myself if I go over 400 before blood test confirms it and I’m on meds. Don’t worry about taking hydroxi. It will be introduced to you slowly and you will be monitored carefully.
A word of warning , if you refuse meds then your travel insurance will be invalid x
Insurance invalid??? - I long haul international travel (or did) a lot. I declared everything on my insurance - and have not taken medications and all was well.
My specialist said she was formally required to advise medication (and wrote a letter to me and my GP saying so), but she also said she was happy to monitor me with my fasting and diet protocols. She could see the results I was achieving (especially after fasting) - but was not trained in that area so was looking with interest.
I also long haul travel.One of the questions I was asked last time was are you taking recommend medication for your condition? If you don’t we can’t insure you
Yes can be stressful checking out further options other than aspirin . Similar symptoms to yourself but feeling very tired after eating in the evening as well. My ET turned to PV and my haematologist called me in and said I needed to start treatment so decision was made for me which I hated and was pretty scared as like you I like to keep natural. I chose Pegysus and have been on it 2 weeks only but finally and strangely feel relieved that I am now addressing problem. My haematologist told me that there is a very slight chance that Pegysus can very occasionally put you in remission. So far no side effects touch wood. Worth having a look into all the options that are available to you including HU. I wish you all the best
Only that RBC and platelets and haemogloben increased a little. Became more tired in evening and occasionally squashed head feeling😅. Wouldn’t really have known otherwise except the experts looking at blood results. Didn’t really take many remedies except for sambucol to boost immune system as gave me confidence with covid and the occasional Q10. Mainly try to eat organic food and fresh home cooking although get tempted by the odd takeaway. Hope you get the answers you are searching for x
Everyone has already given you great advice/suggestions. I would add that my MPN specialist would also not consider the difference in your readings as significant. Mine bounced around for a while (but on a steadily upwards trajectory) for a couple of years from 550 to 700 to 750 to 900 to 950 - this last reading they jumped to 1,400...my hemotologist was planning on keeping me on the watch and wait protocol given my age (52) and general low risk category but the combination of the jump in platelets to 1,400 and the fact that I started seeing bleeding of my gums when I brush my teeth moved him to suggest we start medicine (ET Jak2+).In fact he said it was only the combination that moved him to suggest a more aggressive stance. Had the platelets been at 1,400 with no increase in symptoms then he probably would have been fine with daily aspirin and watch and wait. He stated that doctors like round numbers (60 years of age; platelets > 1,500; etc.) but each individual patient is different and each case needs to be approached in an individualistic manner.
After a lot of back and forth, I went with starting HU 500mgx2/day. He was open to pushing for Ropeginterferon alfa-2b (which is not yet approved for ET and therefore off insurance here locally) as he was able to get it for another patient (interestingly enough it seems that it is easier to source locally than Pegasys for some reason).
We spent about an hour reviewing the latest literature (including some things he has authored/co-authored) and he was very gracious with me reviewing the science around longer term use of HU.
Thanks to so many on this board, I was very well prepared for the meeting. At the end of the day, it was not an easy decision, but I believe it was the right one. I agreed to start at a relatively mild dose of HU to see if it can do the trick. It has only been a week so haven't had any adverse effects at all (a little more tired than usual but also fighting the first cold we've had circulating in the house in over a year - a side benefit of COVID is that in a house with 4 kids we went an entire year without one cold/flu as everyone was masking up and more dedicated to their hand hygiene..so not sure if its the medicine of the cold/virus that has me a little more tired)...
Have first blood test at 2 weeks and we'll see what things look like..hopefully there has been some positive effect..if not then we'll decide next steps (probably after a month)..intuitively it still makes more sense to me to use a medicine which helps boost a natural process in our immune system (interferon) but I am just glad that we have options.
Good luck with your decision and keep us informed!
with regard to asprin - I was told that Curcumin (with pepper) is a great blood thinner and in fact so much so that it is warned not to take it with asprin. If you did your blood ended up too thin,
there are indeed so many opinions - it is a nightmare. And - I have had 2 family members die from this, so I do take it seriously.I have not seen a liquid curcumin, I grate it a lot (in drinks and ferments) and in a supplement (CurQ10).
I would love to hear what your Ayurvedic practitioner has to say. NZ is a very small country and I do not think we have such a thing here.
Hi Mostew, my platelets were 400 + but not more than 500 over a year. Iwas found to be jac2 pos and with family history,highish BMI, hypothyroidism and age,70, I was started on Aspirin and Hydroxycarbomide,2 a week to start,now 5 a week. Platelets haven't dropped below 400 so next bloods due in July.I am feeling better but I hadn't really realised how odd I had been feeling. I take folic acid and vitD + treatment for B12 deficiency. I suppose everyone's case is different and heamatologists seem to differ but I would reassure you to take treatment offered as improvement may take time. Good luck.
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