I’m very recently diagnosed ET with JAK2 mutation having been tested since I had a TIA (side note, had an MI 4yrs ago which may or may not be related).
On a twice daily baby aspirin and eliquis, and starting pegasys soon.
How life altering was this for you - particularly mentally?
I consider myself and identify as a super healthy person - I eat well, I work out. Like how do you cope?
I keep trying to follow a stoic line of thought - you can’t control what happens to you but you can control how you react...but its really hard.
Ive read the posts about interferon side effects and hopeful for the best.
How have others coped mentally?
How do you deal with the knowledge that your ET may become something worse but also may not?!?
How do you talk about it with your friends? Your kids? Your spouse?
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JT_Marlin
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Hey but that is all good because that is precisely why we are all here ... is it not?
Firstly, there is a great deal of misinformation out there about having an MPN...
For instance, and in the case of ET & PV... there is only a 10-15% chance at worse that people w/ ET & PV will go on to having Myelofibrosis (MF)... When looking at that equation from the glass half-full perspective, (instead of the adverse converse), it simply means that the odds (85%-90%) are actually in your favour... That is a huge positive JT...
However, in the event that the odds might not work in your favour, and like me you might join the ranks of becoming MF, then there is a 20% chance that you might progress to Acute Myeloid Leukaemia (AML)... STILL 80% in my favour...
I'll back the odds any day...
Also... more and more new discoveries are happening these days at a rate of knots...
So stay strong & stay positive buddy...
It is also important to remember that most people w/ ET & PV can lead pretty much lives of normal longevity, providing they do try to take better care of themselves, like you already do...
Good anti-inflammatory dietary & a consistent exercise regimes will really help all of us if we take up that challenge...
So... be happy guys and realise please... It is NOT always all bad news here... Quite the converse in fact!
Everyone of us has a slightly different MPN condition... There are so many variables to our MPNs...
While the 10-15% is a statistic often quoted by many of those who provide literature on MPNs, ... there are no guarantees with anything...
All of us simply have to find the best way we can to 'Live with...' Our MPN, whatever flavour it might be...
More importantly, I believe... We need to try to spend more time being less anxious over what might never happen... Who knows right? A cure might be just around the next corner... I choose to live in a world where anything is possible...
I understand being diagnosed can be a little overwhelming... It certainly was for me too... Maz would recall just how apprehensive I once was too...
And at first, I too used to worry far too much about things that I would have done far better not to waste my time and energies in such a wasteful manner, in my view...
Anyways, since then... personally...
... I have found that trying to achieve something positive about creating better outcomes for all people with an MPN gives me a strategy to remain positive and hopeful about the future...
It takes a little time Aneliv... but it really helps me...
The Fundraiser & MPN Website that I started in Australia is my new mission in life. To bring much greater Awareness about MPNs to everyone who will listen, to try to help create more MPN Specialists, and to raise funding to conduct specific research into MPNs...
If you like Aneliv... Your assistance to help us creating Awareness for MPNs would of course be most welcome...
Thank you, your statistics indicate to me that my chances of development are higher than I thought. Oh well I just tell my self there are lots more illnesses with far worse outcomes than MPN
I find exercise has a huge impact even when I’m feeling fatigued i must push myself although there is a fine line and knowing when to rest. If I don’t it’s like falling in to a ravine and then climbing your way out which I find really hard. Also I now confine myself to bed for most of day if I know I’m going to a function where I’ll be dancing a lot.
I’ve done the same diet (basically the Auto-immune Paleo diet) as Steve for the last 2.5 years. My health and that of my whole family has changed unbelievably. Except ai eat an egg a day and my cholesterol went down. We eat loooots of best organic greek olive oil. A liter. weekly. That’s also antiinflammatory. We stay clear of pork. Pork meat is very inflammatory true to the high arachidonic acid content. It fires up your immune system as do sunflower seed and vegetable oils. reduce therefore omega 6 and take more omega 3.
We also do detox by eating bitters and taking detox baths. I got rid of all amalgams (with Chlorella). It was tough on my body and brain. Took almost a year, but that chapter is over!!! I have more energy and brains now at 55 than at 40. I’ve had ET for 10 years now. Diagnosis was just 2.5 years ago, hence the diet.
Interim fasting is sensational. Do it! I eat really well and actually more than before and my body slowly shed 20kg. Even my wedding gown is 2 sizes too big. 😁
Welcome to the site. You will find all the info and support you need here.
As Steve has said there is only a small chance of it actually progressing to something considered more serious and the effects of it can be easily controlled.
I’m also on Interferon, only a couple of months in, so too soon to see what it’s doing, but so far so good with very little side effect (I wake up feeling a bit nauseous the day after taking it, but soon wears off). Good luck with your MPN journey
Drinking Water in Copperware (stored for 8 hours or overnight) has following well-known health benefits:
1. Prevents water-born diseases
2. Helps the digestive system to perform well
3. Aids in weight loss
4. Slows down aging
5. Good for cardiovascular health
6. Maintains hemoglobin level
7. Regulates the working of the thyroid glands
8. Stimulates the brain
9. Its anti-inflammatory
10. Fights free radicals Keep water in a copper vessel overnight by your bedside and drink this water first thing in the morning when you wake up. This helps keep your digestive system healthy and will make you feel very refreshed and light everyday.
Copper is an essential element but too much can be toxic.
In places where water is untreated, the copper will kill bacteria that are present. But for most people on this forum the water will be properly treated.
The amount of copper that is leached into the water and the amount of copper consumed will vary depending on time, temperature and other aspects of water quality.
Copper jugs are not a good way of increasing your intake of copper in a controlled way and could be harmful.
I should have said , get advice if suitable for you
I see an Ayurvedic practitioner who said it will be good for me . She is aware of my condition ( ET JAK pos . ) and at present I’m only taking natural remedy S and baby Asprin ... Xx
2glasses a day enough . We never know what amount of any nutrients we take in due to varying quality , organic or not , how well we absorb . I guess we need to be sensitive to body reaction . X
Without having the water tested after it has been put into the jug you cant know whether it has too much, or too little, copper to be safe or effective.
The amount of copper taken up by the water will vary from place to place as will the copper content before it goes into the jug.
A balanced diet should give you all the copper your body needs.
All my ancestors in Greece used copper jugs, pots and pans. Most of them made it into their 90s and up to 106. I’ll take the copper jug. Thanks for the tip. My husband is copper deficient, so he’ll get the first glass in the morning.
Losing valuable traditions that were proven effective over hundreds even thousands of years is one reason we are all so sick and dependant of chemicals to keep up alive. 🙂
I’ve only just read all your posts . It’s not easy trying to take a ‘pro active’ approach is it . Takes up a lot of energy ..
but it for me important.
I have Hashimoto as well . Dr didn’t suggest test , just happy to know my thyroid under active and treat that . I take a homeopathic remady . Thyroidenum , as well as levothyroxine
O wow! I change to thyroid, bio identical swine hormone. Has T4 and a bit of T3. I was able to cut down my intake from 200mcg levoth. To about 85mcg (2- 2.5 grains of bio identical). My thyroid will probably never really recover because my doctor put it to sleep for about 15 years, but it’s working again and I feel good. I also got my selenium up and take 40,000IUs of Vit D weekly. I keep my D at 65/70. Really important for thyroid health!
I also remember that copper was added to amalgam in the 80s to make it easier to work with. i just finished getting all 35 filling out. It was really taxing. I have found that the toxicity you’re talking about probably has to do with too much copper getting stuck and congesting the bile: hindering a good flow and detoxification.
As with all natural treatments, the body has to be closely monitored and the therapy adjusted. Our body’s complexity demands that every little change in treatment be monitored closely, else problems may creep up. Educating oneself and observing one’s body closely and having a team of Good specialists is important.
Yes I understand. I just added other sources of copper from the environment. Fact is, too much copper can block the bile pathways, slowing down the flow and causing a toxin bottle up in the liver. Of course this leads to all kinds of illnesses.
I’m like you, eat well, exercise and been on Peg 20 months.
For me a great drug. No side effects and achieved both molecular and haematological response.
And re your QoL question, I was dx in 2016 and feel fine. Not significantly impinged upon my QoL.
That first few months post dx are a bit of a shock but I think you will soon be much more relaxed. There are significant medical advances in the pipeline and, in the meantime, Pegasys appears your best option re slowing any progression.
Hi JT Marlin, welcome to our forum. I would suggest you have a look at our website, mpnvoice.org.uk there is lots of very useful information on there about MPNs, medications, how to cope with side effects and how to explain your MPN to people, which can be very difficult, especially telling children. There are also lots of very good videos and real stories, so have a look, and hopefully it will help you.
I was diagnosed a month ago and I've managed to stay positive, but I still catch myself thinking "WTF?" a few times a day.
I'm still in a phase where I mostly feel relieved.
Talking about this? Well, I was so nervous and awkward telling the few people I've told, who I felt needed to know, that I'm going to put some time and space between talking about things. This forum has given me the outlet and support I need.
Fully agree - the best people to get support from are those on here, whom experience the same things we do. I’m learning so much, it won’t be long until I know almost as much about MPNs as my Haematologist does 😉
You might get to the point that you’ll know more than the hemo, especially about YOUR body and illness. You’ll see. Knowledge is empowerment and therefore capability to live well. Cheers! Anag
I was diagnosed with ET over 30 years ago. It progressed to PV about 7 years ago. I also have another kinase-based disorder - Neurofibromatosis type 1 that complicates things a bit. The NF1 lead to a brain tumor that I had to have resected back in June 2019. A year before that, I had to have a heart surgery for tachycardia (catheter ablation). Six months prior to that I had a Green laser PVP, that was a terrible surgery. It has been a rather interesting couple of years! Managing the MPN in the context of all the other stuff has been a real learning experience. I will have the chance for even more learning as the docs just found a bone tumor on my mandible.
So how to cope? I think we all find our own ways. Here is what works for me.
1. Support from my family, friends, and faith community.
2. This forum (my friends and MPN Family).
3. Maintain your sense of humor and find ways to have fun no matter what.
4. Mindfulness practices - I practice Qigong.
5. Say the Serenity Prayer every day and take it to heart!
6. Educate yourself about your condition(s).
7. Create a high quality treatment team who you trust.
8. Advocate for yourself. Assertive patients receive higher quality care. Passive patients do not. Remember that you are in charge of your care. It is your goals, priorities and preferences that must drive your treatment. Empower yourself to deal with the MPN.
I have been blessed to have a relatively indolent form of a MPN. I have lead a long rich life and plan to continue to do so despite what happens with the MPN. Sure - there have been some challenges with the ET-PV and the other related and unrelated medical issues I face. Sometimes you do, as the military folks say, have to "Embrace the Suck." However - it is not all "Suck." There is plenty of good in life to enjoy and embrace. As the prayer says, I seek the serenity to accept what I cannot change, courage to change what I can, and wisdom to know the difference.
More than anything else at this point, know that you can manage this. There are ever-more treatment options and very real hope for MPN treatment improving in the foreseeable future. It sounds like you are putting together a good plan. Have confidence that you will be one of many who do manage the ET successfully.
Thanks Sandy. We will get it all sorted out as best we can. I am seeing the neurologist for the follow up brain MRI tomorrow and will get the rest sorted out in good time. Planning to put off the bone tumor surgery until later this year if I can. Seems like I should give it at least a year between surgeries. We will see what happens.
Meanwhile - planning on a fun weekend. Hope you have one too.
Hi I was a fit guy squash Monday and Friday played 5 a side Tuesday and gym circuit training Thursday
I started with gout and an enlarged liver and spleen in 2013 loads blood tests two bone marrow both negative in 2013/14
Then they took my spleen out 6/614
My platelets was normal prior to splenectomy at Manchester royal infirmary then everything went wrong blurred vision platelets went ridiculously high
I had a Haematolygist at Wigan dismissed me January 15 th 2015 for a 12 month appointment!
Then March I needed a foot operation as the high Uric acid eroded the bone in my right foot but two days before operation had an angina attack
They went ahead with the operation as a letter sent out telling me to cancel came to late from A&E consultant
Then a got a Haematoma ended up in A&E again same month March 2015
My GP was monitoring my bloods and referred me back to Haematolygist but in Bolton in July 2015 they did more tests and found I was Jak2 positive and 50/50 ET and PV
I started on asprin and hydroxycarbamide 500 mg
But still got blurred vision joint pains then had an haemateura in 2016 and a TIA in 2017
I’m on lots medication now blood pressure, VK penicillin,allopurinol,Statins ,Apixiban,Irbesarten,Pantroprazole,Zapain,
I also have Accupuncture for pain weekly
My life turned around I’ve had counseling which helped me the GP tried putting me on antidepressants which I refused as I’m on enough medication
I get stomach spasms periodically and take medication for that also
It’s just staying positive and hoping a cure is round the corner
Hi, Phil, I’m sorry to hear of all your troubles. You’ve really been through a tough time. At least you found this site which has invaluable information. I was diagnosed with ET Jak2 in 2008 and MF last September. I was feeling much more fatigued and unwell about a year and a half ago and my hematologist kept brushing it off. I found this site about the same time and I was encouraged to see an mpn specialist, and she confirmed my suspicions. I wish you all the best.
Hi thanks for your reply how are you coping with MF ? Are you on hydroxycarbamide?
I take 1500 mg daily now
I hope your Haematolygist is on top of things it’s important to have confidence in your specialist I’ve been under 9 in my time but now under Professor Sommervaille at Manchester Christie hospital he’s brilliant
How did you recognise the change to MF was it just more fatigue?
So I’ve been taking hydroxy every day in varying doses since the beginning. I’ve also tried anagrelide and ruxo. I was leading a pretty normal life, working full time, spending time with family and friends, etc. In 2018, I developed anemia and my platelets were over 700 on a consistent basis. I was unable to work a full day, I could barely hold my head up some days. I experienced night sweats and even ended up in the hospital with a terrible kidney infection last summer. When my doctor told me he didn’t understand why I was so fatigued, that’s when I decided to find a new one. I found her on the mpn website. She did a bmb, ultrasound, and extensive lab work. After weekly visits for 4 months, my numbers have stabilized and after my last visit on Jan 24th, she said I don’t have to come back for a month. I’m feeling much more positive now and so grateful to this site for their encouragement.
That is a really rough ride my friend. Having endured a brain surgery, heart surgery and Green laser PVP between Jan 2018 and June 2019 while managing the PV (thrombocytosis + erythrocytosis) - I can get where you are coming from.
One thing you might consider is the practice of Qigong. It has really helped me. It is based in the same principles as acupuncture, but the energy work is done differently. Given your past history of athletics, you may find Tai Qi Quan, 8 Pieces of Brocade, Tai Qi Qigong a good place to start. Inner work like the 6 Healing Sounds that can be very helpful. Finding a Sifu (teacher) who really knows what they are doing makes a big difference.
Hi I have been looking at Tai Chi I’m really into that type of stuff will look locally for a class
God you have been through so much it really does put things into prospective when you read other’s problems on here
I hope your doing well now your obviously a strong person mentally to deal with everything you’ve gone through
I’m on 1500 mg a day now of hydroxycarbamide but get good and bad days I’m at Accupuncture today the lady who does it does Tai Chi I’ve written down the name of this one and will ask if she knows of any local
I don’t think my situation was as bad as yours, but I was suffering from all kinds of problems for about 10 years by the time the ET was diagnosed. I was physically and mentally a wreck, never had a proper diagnosis and all my university prof. Dr. friends could do was to prescribe me chemicals to fight my symptoms as is usual with conventional doctors. These chemicals dampened the symptoms for a while, until the next problem came about. You sound just like me. Truth is: Chemicals help and hurt. There’s no way around it.
The first thing I did was run to my TCM doctor to get a complete other viewpoint. She immediately sent me to a fabulous dietitian and got me to send my stool to Germany to the Biovis lab, that does extensive intestinal bacteria and parasite testing. That was the beginning. I had to clean and strengthen my gut, do a thorough check on all my hormones, metal poisoning (I was saturated with mercury, aluminium, lead) and I started deeply educating myself regarding diet, GMOs, environmental toxins, cancer, diabetes, heart, heavy metals, parasites, depression, Alzheimer’s (I was already heading there like my parents), and so much more. But, I only listened to and read information from specialists in functional medicine and other alternative doctors. I have gathered no less than 1300 pages of my own handwritten notes. To find out what has happened to me in the 2.5 years since my diagnosis just read my answer to JT below.
I’m on the same autoimmune paleo or similar diet as is Socrates (Steve) on this page. I got rid of the many unnecessary meds that I was taken, since they were not needed, or I substituted them with natural alternatives. I’m not talking about homeopathy. Just food, vitamins, minerals, enzymes, bioidentical hormones. I’m better off now at 55 than I was at 40 after the birth of my daughter. My life long tendency to depression is gone for good and so is my 30yr eczema, overweight, brain fog, anger issues, distension, IBS, fatty liver, high cholesterol, thyroid is MUCH better, lymph nodes, spleen is now beautiful, despite all the blood problems, immune system really strong, etc. There’s so much we can do!!! I want to just scream out!
Reading the amount of meds you’re pouring into your body, I got goosebumps. Every single one of them has side effects and cross effects with each other. There is no medical computer program that can even start to calculate the havoc that these may be causing your body and mind in the long run.
Please find and invest in a very good functional or orthomolecular doctor, a very up to date dietician, etc (put together a good team of specialists) who will really look at your system as a whole and help you get your body back on track. I was able to get rid of all meds, except my Anagrelid, which keeps my platelets in check. Some chemicals are just necessary, but I work against the symptoms that it causes! It’s a delicate balance.
Please think about what I’ve written. There’s nothing to lose, just win. I want all others to get better, just as I did.
Through diet, You’re doing a lot of excellent things for your health already. Really great!
If you’re having digestive problems though, like all of my family and most of my friends, it’s necessary to get wheat and milk products out of the diet. We are all grain free except for some rice. My daughter has antibodies to ALL grains (except rice) worst of all rye, then wheat, but even oats! It took us all about three months to heal our leaky guts, while avoiding these foods and at the same time drinking bone broth daily and taking l- glutamine. Thereafter, we started on the probiotics, kefir, sauerkraut Kimchi, etc. and prebiotics to build up the intestinal flora. Prebiotics are foods that feed our good intestinal bacteria.
Almost all grains today are gene manipulated and our gut doesn’t recognize them. They eventually create havoc in our systems, which start to treat them like an enemy and that is why our immune system goes haywire, causing all kinds of problems. 70-80% of our serotonin is made in our gut. If the gut is not working properly, we get neurological symptoms, ie. depression.
The thyroid membranes resemble gluten. Many top doctors hypothesize that If we have a leaky gut and are eating gluten, then the immune system attacks the thyroid as well. I have Hashimoto and this autoimmune disease is exploding. My pharmacist told me that the T4 prescriptions have doubled in the last 10years.
Nevertheless, most people’s bodies in the west are in a constant state of inflammation. This eventually weakens the body and depending on the gene weaknesses that we all have, that part of our body starts to get into trouble.
. I was able to cure my autoimmune illnesses, (eczema, histamine problems, allergies) and was able to start curing my Hashimoto and I’ve gotten off all meds, except aspirin and Anagrelide.
Since I’m fanatical, I’ve banned all cleaning agents and cosmetics from my home. It took me 6 months to do that part. I only use organic natural stuff that I make or buy. It’s not been easy, but my family believes in all this and they went along with the changes.
This is a lot of info to think about. I just had to write it, because I really believe in these methods and I’d like to help.
Personally, I was worried at first and even before I knew I had ET because of odd blood results from a routine blood test, but I decided I wouldn't let this get me down. I had just come out of an anxiety/depression stage and wasn't going to let this disease send me down again. My platelets are only in the 500s and I have only a couple of mild side effects. I know some people on here worry, but l think it is mostly manageable. Suffering from sporadic anxiety/depression is to me much worse in how it affects me.
I didn't tell my daughters at first that it was classed as a blood cancer, but one of them googled it, so I had to explain it.
I'll probably have to go on Interferon soon so I might change my thoughts about it but now I feel good, partly because I have just become a Grandma again!
Obviously, you have had related illnesses so this will make you worry more, but hopefully the treatment will prevent you getting any more TIAs etc.
I know how you feel, I was also an extremely fit person on diagnoses, (Masters competitive swimmer), and was completely knocked back at first. I think it was mentally rather than physical symptoms, which I could cope with. I felt my body had let me down, and worried that I wouldn’t be the same person in the future.
Now on aspirin and Pegasys, and still working full time and training. I just listen to my body more, and don’t worry if I miss a training session because I need the rest. I think it’s just a matter of adjusting to a new way of thinking. A year in and I’m starting to feel more positive again. Hope you feel the same in the future.
JT I don't know you, but having read your message, I have no doubt you will turn this new challenge life has just thrown at you into a positive. Once you deal with the initial emotions that come with the news - shock, sadness, anxiety and even anger (why me?) - you'll move onto accepting the diagnosis and thoughts then move onto how to best manage it, and positive goals/focus moving forward.
Life is a fantastic gift - with or without ET - so lets get busy living!
Diagnosis of ET, JAK2 positive 3 weeks ago. I am starting inferon tomorrow.
This site has been a great support, but the 'wtf' factor is still here.... It feels very surreal, rather than real at the moment. Am thinking it may hit me more after clinic tomorrow, but think the people on here have kept it in perspective. It's a chronic illness, but many on here live fine with it and their treatment.
I have little family, they are supportive but also trying to get their heads round it. We've decided not to tell my young nephews, aged 7 & 11, they lost their nana last year due to cancer and it will worry them more than seems necessary.
I'm trying to educate myself, mainly from this forum and the MPN voice site, but also aware of my mental limits. Too much info is not necessary, I have time to learn.
Fingers crossed all goes well for you, and all of us on here 😊
I hear you loud and clear. I have ET CALR. I was diagnosed after my 3rd TIA. I was sick of going to doctor after doctor for years and no one took even 765 thrombos seriously and all those doctors were (still are) friends of mine. I believe in forgiveness. My anger was immense, but I’ve settled and believe my general health today is better than it was 15 years ago.
My recipe:
I educated myself, got through the grief, through diving into natural medicine studies changing to the Autoimmune paleo diet, organic foods, good quality supplements and a few good doctors who also work alternatively (TCM, Orthomolecular, functional, good dentist, chinesiologist). I have a new lease on life. 60% less thyroid med, less chronic anemia, depression adé, eczema gone, I’ve gotten rid of my daughters dermatitis, reduced her fibromyalgia to almost nothing, her aspergers traits and lack of concentration are no longer present. My husband’s psorriasis is also 90% gone (even in the middle of winter). The list goes further to friends and family. I’m empowered and happy.
I am even thankful to God for the diagnosis and the shake up it gave me to take control of my life and future and redirect myself to a more natural and clean lifestyle.
The important thing is to get a really good hemotologist (MPN specialist) who sees you as an individual, who will take every question and concern seriously and who will find the best therapy for you. I take Anagrelid and only 50mg Aspirin daily, but also take ginkgo for thinning my blood. I can’t take Interferon, since I have Hashimoto (autoimmune thyroiditis) and I can’t take Hydroxyurea, since I have a genetic anemia since birth.
Get to understand what exactly your body and mind are doing and adjust your therapy and lifestyle in order to optimize your health. We are all different and need precise tuning.
We are a fabulous group of MPNers. We support each other, share views, help each other when we are down, and much more. Welcome to our group and just write, whenever you need to. You’ll be just fine!
Hi be careful taking Ginkgo I was told off by Professor Sommervaille at the Christie hospital for taking that with hydroxycarbamide he said it can make you light headed dizzy and told me to cut out all vitamins and just eat healthy balanced diet
Hi Phil, I feel fab with the Ginkgo. At first Only 3x 50mg aspirin weekly and careful to take 60mg Ginkgo 3x daily. I’ve gone up to 50mg aspirin daily, since thrombos increased a bit. A year ago, I had a horrific nose bleeding episode one morning, probably caused by a high blood pressure attack over night. I was terrified since that is how my grandmother died at 57. It was almost like a faucet. My doctor has just increased my aspirin. I stopped the aspirin and ginkgo on the spot and was out of the danger zone by the evening and I had no more fear going to sleep. If I had been taking only aspirin, that would not have been the case, since aspirin stays in your body up to a week and the chance of another bleeding would have remained for days. Ginkgo is out of the system in 12 hours. I started taking the aspirin and ginkgo slowly a couple of days later. Important is to get to know our bodies well and listen to them. Cheers. Anag
All I can say JT is stay with this site. I am also very new t this but with the help of this site the future looks brighter. You'll do fine with your attitude. Regards
thank you - honestly thats my plan. But this has been really hard for me. Im carrying on life and work like nothing is different and yet this is all I think about.
I understand completely. With me It's become somewhat easier to accept. Though it's a chronic issue lots of people out there way worse off. Keep on trucking!
Tons of great advice here (as usual). I would just like to add my welcome to you. This is a place with great people, all at various points in their MPN journeys. I’m ET Jak 2 +. Not much I can add to what has already been said except peg has been a great drug for me (I too have suffered TIAs) and it’s sorted my platelet count with minimal and manageable side effects. Let us know how you get on👍
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Is this feeling normal?? 
Has anyone on Pegasus interferon had eye retina problems?
Fatigue - ET or something else
Vitamin K2??
Is This Medical Negligence. High Platlet count unknown to myself for 10 years causing mini stroke & Being diagnosed with ET.
