Et treatment

[shiela23]

Does anyone have ET without treatment only aspirin????

[Andrew8]

I think it depends on your platelet count. I understand that they normally want it to be below 700. Of course any treatments will have their side effects, and although aspirin does not lower the count it does help to prevent the platelets sticking together. Anagrelide and Hydroxycarbamide

I was diagnosed with ET in April 2016, platelet count over 1200, and put on Hydroxy, but suffered extreme fatigue in December 2106, changed to Anagrelide, but fatigue continued until April 2017, when I was diagnosed with Atrial Fibrilation, after cardio hospital treatment and medication was re-diagnosed with MF, and changed to Jakavi. After two cardioversions my AF is now stable, with reduced medication. Developed shingles in August 2017, and some rash is still present but manageable with Aloevera gel. Platelet level stable at about 500, and spleen is only slightly enlarged. Still keep active, 70 , cardio rehab weekly, swimming , walking, etc, but some days just have to be a lazy one. Tend to do too much on the good days, but grateful for all the wonderful treatment at Aberystwyth hospital.

Update August 2021. I am reasonably sure that my cardio problems are due to a side effect of Hydroxycarbamide ( which is well documented ) In 2019 I was experiencing general fatigue, and it was suspected that the cardio medication to control my heart rhythm, may have been responsible, so the dose was reduced, but this did not help, and in December 2019, I went back into AF, and despite treatment for Thyroid, I showed no improvement, and was not offered another cardioversion. Earlier this year with no apparent way forward my wife kept looking for ideas from Dr Google, and came up with possible magnesium deficiency. So I tried taking magnesium tablets, and the background fatigue has largely improved, but I am still left with the fatigue and breathlessness when doing anything more than light general exertion, which is usual with AF. However I have now been offered another cardioversion which if it works may improve my capacity further. Jakavi seems to control the platelet levels well, and all the other blood factors seem to remain stable, but again the symptoms of shingles is a listed side effect, and of course Jakavi is a very expensive medication ( £2k per month I was told ) .

[Oceanviewer2019]

I only take a 81mg Aspirin each day (am). I have been told by a number of physicians that I will likely be moved to a stronger blood thinner after I turn 60.

[shiela23 in reply to Oceanviewer2019]

What number of platelets are you now???

[hunter5582]

Treatment for low risk ET is normally aspirin-only and monitor. Low risk = age<60, no hx of thrombosis, hemorrhage, microvascular events, co-occurring medical conditions, PLT<1.5 million. The only reason to initiate other treatment would be if the risk level indicated the need or if the patient was experiencing bothersome symptoms. I went for most of 30 years treating ET and PV with aspirin-only for the MPN med.

The decision to initiate cytoreductive therapy has to based on analysis of the risks and benefits. There are additional treatments for MPN symptoms should they be needed. It really depends on what the symptoms are.

[Misty-3]

HelloI am ET Jak2+ diagnosed in 2019 and have been taking aspirin 100mg/day. My platelets range from 550 to 760…my last count was 760…being monitored and goes for blood test every 3 months. My symptoms include getting tired easily especially towards the end of the day, tinnitus and some pressure in my sinuses also towards the afternoon (had gone to EENT specialist but nothing wrong with my sinuses)…so yes we can be only in aspirin…am less than 60 though my 2nd Haem said that giving other medication will be based on several factors and not just one…Hunter had elaborated it well…take care…

[Elleuno]

Hello Sheila, I have ET, triple negative. I have recently come off HU after being on it for 18 months. I couldn’t tolerate the side effects which my Haematologist had constantly told me we’re not due to HU. After several cardio checks I had the all-clear that my symptoms were not due to a heart problem. When first diagnosed in Oct 2019 my platelets were high @ 1300 and because of my age 67 at the time I was told I needed HU as I am high risk. Since coming off HU I have felt SO much better and have energy, the shortness of breath has improved. These were the main side effects, although there were several more. My platelets at the time of coming off HU were @ 700. I had a check up 2 months later and they were just over 800. My HM had expected them to skyrocket again and was satisfied that I could continue with just the daily aspirin and she’d check again in 4 months.

My haematologist has said she’s going to ‘treat’ me as though I’m 10 years younger and see how it goes. I will add here that I am generally quite an active person but had gotten to the point last year that ‘that’s it’, time to hang up my hat so to speak. (I have a horse and pet sit etc.).

I try to stick to a fairly healthy diet, but am not rigid about it. I also started Energy work with something called EAM (Energy Alignment Method). I’ve started seeing a naturopath, I take CBD oil. So I’ve been pro active in doing what I can to help myself.

HU also really messed up my food intake and I still struggle with that. I developed diabetes 2 just b4 Christmas and have been doing what I can to get my sugar levels under control. They’ve come right down to pre-diabetes levels. The past 3 years has been one of continued health challenges, firstly, a serious car accident sustaining 3 fractures. Subsequently a knee replacement 6 months later and I’ve had Covid twice in Sept. 2020 & Jan 2021. So I’ve had quite a lot to deal with but I have to say I’m feeling very optimistic about the future and I’m almost ready to get back on my horse!

I believe that a positive state of mind is paramount to the challenges one faces with ET and that it’s important to be proactive in your care. Listen to your own body. Good Health is the most amazing gift we can all claim. I have felt very low at times re my health but I’m not ready yet to give in to ‘old age’. I hope this helps in some small way. All the very best!

[Solyesh]

Sheila

I have ET Jak2+. Was officially diagnosed in December of last year via BMB but my platelet counts had been high for 7 years prior. After my initial high platelet read back in 2014 (at about 700) my GP put me on a daily course of 81mg of aspirin - I was 45 at the time. My platelets stayed steady for 6-7 years (probably more as I suspect that my platelets had been slightly elevated for years even before that first test indicated as I was not doing yearly monitoring until the age of 45 and had no reason to check bloods prior). Considered low risk (age; no hx of thrombosis; platelets<1.5M).

Earlier this year my platelets shot up from low 900s to 1.4M. Even at that level my MPN specialist was Ok with having me remain only on aspirin..but I started to get gum bleeding every time I brushed my teeth (never happened prior) so that combined with the spike in platelets moved him to suggest we start cytoreduction.

Had it not been for the spike (and bleeding) he would have continued with the aspirin and monitor regime well into my 60s (currently 52).

Many people manage just fine with aspirin and consistent monitoring.

[Wyebird]

Some people will be in wait and watch. Are you one of those patients? They also factor age and medical condion. Especially if you have had a stroke or heart attack

[C2Cnext]

Hi shiela23I have been recently diagnosed with ET with Jak2 and my counts are over a million. I take aspirin only, as I don’t have a high symptom load and the possible side effects of HU sounded worse than my symptoms!

Thankfully I have a hematologist who lets me be in the driving seat and is beside me answering questions. The one question he couldn’t answer was “what’s the number that’s too high for platelets?” His view was that every body is different and his job was to advise me based on how my body was reacting. Seems my body is fine with 1million and the exercise and diet regime I follow. If it weren’t for ET I’d say I was in rude good health.

I also questioned him about the arbitrariness of the WHO guidelines that suggest in a year and a bit I am changing risk profile as I turn 60. I thought he talked sense there too, when he argued my risk profile will change as I age and as my risks increase (and if things change) we need to address them.

As a newbie here I read folk’s posts about how their body responds to meds with interest. I often yell at the screen though when I see advice or description where folk don’t address ALL of their body and talk about their MPN and treatment in isolation to the rest of what they do to and shove in their bod. As Hunter so generously advocates (love your posts Hunter 🤓) the decision of what meds or otherwise needs to account for all we do and all the interactions.

Good luck with the decision making!

[Mostew]

I’m still resisting meds apart from aspirin 75.

Every so often I think it’s time to try it ( when my head feels really ‘odd’ but then feel good and wait till next blood test. My platelets have crept up to 1025 .

I’m 65 . So considered high risk . I am pro active. Take various natural supplements and see anAuyvedic practitioner

Lucky my consultant lets me decide what I’m doing !!!

So good to have support from everyone here.

X

[MaggieSylvie]

I am also only on aspirin but as I also have MDS I am planning to go onto Epoietin injections to try to increase my red blood cells and therefore energy levels. My platelets hover between 500 and 600 atm. The new treatment may or may not work so I am trying it for three months. I suppose the alternative would be transfusions. I had a day yesterday when I had what I am calling "rag doll syndrome".

[Deefen]

Yes, me. My platelets seem to be stable at around 1000, and I have no symptoms at all.

[Oscarsboy]

Hadve been on aspirin only 75mg until last week as although my platelets are around 550 or thereabouts my symptoms after 18 months were starting to make it difficult to function. Headaches, ringing in the ears, dizziness and some chest pain, pins and needles and sometimes burning in the feet. I am at present on HU one every other day and having another blood check next week to see how its going. I was fine for about 18months with no symptoms but gradually they started to increase so the headahes were becoming a daily occurrence along with all the other things. Still have to take the aspirin, but had consultants call today and he said he does not think I am taking enough. However I am not willing to increase until I know how the current level is working. Interestingly he happened to mention that he is mentored by Dr Jane Harrison at Guys . He said he wants the platelet level down to 400 to 450. But at 73 I am in a higher risk category than others on here because of my age. Again I live a non sedatery lifestyle and am on the move most of the time and try to be careful with diet etc. having suffered with ME for 5 years in the 90's I am of course going to have to be aware of any signs of fatigue etc.

[Alexbits]

I was diagnosed at 33 with platelets 550-850. After a year on aspirin and doing some research I've made a decision to proceed with peg interferon treatment. I'm not a "watch and wait" kind of a person

[nemi11]

Hi Sheila.I have ET with JACK2.

I don't take anything.i`ve been only monitored every 3 months. I'm 35 years old. My physician says to listen to my body if I feel something strange, we will see about it.

Sometimes I felt really tired but I connected it with the fact that I was really stressful when I calmed everything was ok.