My platelet count is currently climbing.5/1 each week, which is why I have started Interferon, and nobody knows why. I suspect stress levels at work and in life, but my Heamatologist says that has no effect on counts and there is no reason not to work.
I’m not sure I agree, but I’m not a dr. Does anyone have any experience with stress and anxiety raising platelet count?
In addition I’m trying to decide whether to go back to work or to take some time to let interferon work? I’ve read if interferon works well it can put you into molecular remission, which given my current climbing platelet would be very handy.
As fellow people managing ET in your lives, what would you do?
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Charlieapple2018
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Stress definitely has an effect on platelets. I would have thought that was basic knowledge for a haematologist. If work is stressing you out & you are not going to find it hard financially then have a break. I think pegasys can take a little while to start working, it seems to differ considerably among individuals. It is the best chance of remission but needs to be taken for at least a couple of years but is looking very promising.
Yoga or meditation apps are very useful & proven to have numerous benefits on every cell of the body.
I’ve always been told that stress has no effect on platelets. I reduced stress in my life and they did seem to lower slightly but hard to tell if that’s the cause (I also changed hospitals and counts vary slightly between places due to how they measure them). I wouldn’t imagine stress causes a significant change otherwise people without MPNs would also see fluctuations outside normal range. So personally I wouldn’t worry about the effects of going to work on your blood counts. But I do think getting a diagnosis and starting treatment is very stressful and time off work might help psychologically. Reducing stress is very important for dealing with an MPN whether or not it affects your platelets. I took about two months off but then my work were very understanding. Good luck with everything.
have you read the available info on MPN Voice home page regarding your condition.Now never mind what anyone says, read the info make decisions from a place of empowerment.Your count is too high your doctor will not necessarily know all of the symptoms or how best to manage them.
Stand still take control don't let anyone tell you how too feel.I believe you need a rest, there is a book called" you don't look sick" this helped me when I experienced some of the things you are experiencing.
I believe no one knows better than you do, whether your body needs a rest or not .Your bone marrow is at war with your platelets trying to suppress them, with numbers like yours, things are not yet under control.
My numbers resembled yours on diagnosis and a brain clot was the result of out of control platelet making. I am 56 diagnosed 10yrs ago with ET am in the UK.Now on many many drugs Hydroxyurea now 1500mg daily for all this time.Take charge good luck.
Stress symptoms: Effects on your body and behavior
By Mayo Clinic Staff
Stress symptoms may be affecting your health, even though you might not realize it. You may think illness is to blame for that nagging headache, your frequent insomnia or your decreased productivity at work. But stress may actually be the culprit.
Common effects of stress
Indeed, stress symptoms can affect your body, your thoughts and feelings, and your behavior. Being able to recognize common stress symptoms can give you a jump on managing them. Stress that's left unchecked can contribute to many health problems, such as high blood pressure, heart disease, obesity and diabetes.
Common effects of stress on your body
Headache
Muscle tension or pain
Chest pain
Fatigue
Change in sex drive
Stomach upset
Sleep problems
Common effects of stress on your mood
Anxiety
Restlessness
Lack of motivation or focus
Feeling overwhelmed
Irritability or anger
Sadness or depression
Common effects of stress on your behavior
Overeating or undereating
Angry outbursts
Drug or alcohol abuse
Tobacco use
Social withdrawal
Exercising less often
Act to manage stress
If you have stress symptoms, taking steps to manage your stress can have numerous health benefits. Explore stress management strategies, such as:
Regular physical activity
Relaxation techniques, such as deep breathing, meditation, yoga, tai chi or getting a massage
Keeping a sense of humor
Socializing with family and friends
Setting aside time for hobbies, such as reading a book or listening to music
Aim to find active ways to manage your stress. Inactive ways you may use to manage stress — such as watching television, surfing the Internet or playing video games — may seem relaxing, but they may increase your stress over the long term.
And be sure to get plenty of sleep and eat a healthy, balanced diet. Avoid tobacco use, excess caffeine and alcohol intake, and the use of illicit substances.
When to seek help
If you're not sure if stress is the cause or if you've taken steps to control your stress but your symptoms continue, see your doctor. Your doctor may want to check for other potential causes. Or, consider seeing a professional counselor or therapist, who can help you identify sources of your stress and learn new coping tools.
Also, if you have chest pain, especially if it occurs during physical activity or is accompanied by shortness of breath, sweating, dizziness, nausea, or pain radiating into your shoulder and arm, get emergency help immediately. These may be warning signs of a heart attack and not simply stress symptoms.
Looking back at some older posts just picked yours up, very interesting and helpful, I think it describes me perfectly, I seem to function in a state of stress most of the time. How to control it though when it has become a habit.!!?
Some great advice has already been provided above, and I would definitely have a read of the book mentioned by Lavender.
One thing is certain, your Platelets are far too high right now...
And everything you have mentioned concerning Interferon, has some substance according to many articles that I have also read...
However, and in my view, I believe that should you ask almost anyone here... that they would almost invariably tell you that they have all suffered from a stressful crisis at some juncture, prior to their diagnosis...
In my view, just another Post Et/MF patient, I have absolutely no doubt in my own case that stress has played a most integral role in my MPN condition... but that's just me...
Everyone has their own view of course, as it should be too...
Not sure that any of us could actually hold our careers as being responsible for our stress, as it would seem to me, to be more to the point, that it is the way in which we, (our bodies etc), react in pressure situations.
For example, I went back to Uni' to do another degree, (sometime ago now), and I was sailing through it all... Easily achieved that degree, and never really believed that I was being taxed to heavily, as I really do enjoy studying and learning anything new etc...
However, just prior to my diagnosis, (circa 1 year before), I had a TIA. It was around that time things began to change, and I found that I really started to struggle with the next degree, and it was not over-taxing either? Yet, still I struggled to maintain my focus...
Fatigue was growing on me at that juncture... although I didn't really understand its presence at the time?
Then my father passed, and it seemed domestically that there was a lot going on. However, it was actually me, and my own inability to cope and be able to function, (like I once was able to), and I really was no longer quite the same person anymore...
My diagnosis of an MPN, came shortly thereafter...
Yes you are right about it all. We are changing all the time. It is easier to accept the physical things because you can see them ( even if you do not like what you see! ) but of course things are changing all the time inside and unseen, much harder to understand and sometimes accept. Here's another one 🤗
I was put on Pegasys and used it in steadily increasing doses for 6 months. Unfortunately it did not touch my platelets at and, like you, they fluctuated high and low. I have a fairly stressful job and am away a lot for work however I am now on Hydroxy and platelets are down to 600 odd with no change to job etc.
I wanted to be on Pegasys for the exact same reasons you do, long term possibilities of remission and less risk than hydroxy. Unfortunately it seems there is a section of people it just doesn’t work on. I’m not saying you are in that group and you may just need time but it is a possibility that your Heamo should look at.
I’m currently discussing jakafi with my Haemotologist as, although Hydroxy is working well and is much easier to travel with and take than Pegasys was, I would still like another option.
Hi Charlie, no worries. I’m a site manager for high end cinema build. Basically I spend three weeks at a time in cinemas around the world ensuring the build, picture and sound are up to scratch. I don’t get a day off in that time and have to deal with a lot of different trades in different languages. The three weeks are up till opening day so it’s always stressful when things are behind or not getting done. Long days and overnight work to commission picture and sound in an empty room.
Like I said Pegasys just didn’t touch my counts and I’m sure I’ve seen research that says a good percentage of people won’t respond to it. It’s only been a month for you so far and I think it does take time to work so don’t give up hope. If I can get my counts down to normal levels on hydroxy I may ask to see if it will work as a maintenance drug. Wonder if it would cope better with a low start point.
If hydrea working on you why you need jakafi? I started first two months I feel very well after three months there are many side effects. Now I was turn hydrea
I've lived through some incredibly stressful events since my diagnosis of ET and it never raised my platelets but I did find a study in regards to your question. I only skimmed over it but it seems like stress doesn't raise your platelet levels but stress can cause your platelets to react abnormally and make them more likely to form a clot.
Can you take a leave of absence from your job? You are going through a lot right now and you probably would benefit from a break. I'm currently on a 39 day leave of absence myself...unpaid of course, but I needed a break...physically and mentally.
As it turns out, I’m taking a week off and then my scheduled holiday, so hopefully after some rest and the drug will have time to work and let me get back some of my omph.
Yes, stress can raised you platelets , when I'm dx 2002, my platelets go up from 514 to 670 for only 1 month. First I'm Google about ET, and tray not think about my ET.changing my diet, lot row food, alkaloid food , minimum 2-3 litre water, tea, fresh oranges , lemon juice, only saplement from plants(Aloja ,ginga, NONI juice, cod fish oil, spirulina and Cllorela )I'm remember when told me I'm have ET I'm start drink only Aloja juice one spun in morning with 2 glasses water, and only camomile tea, water minimum 2-3 litre, and slowly my platelets go back in range 450-500 stay all 28 years , last 2-3 years was about 420, only on coated aspirin, but last year transform in PV, and I'm was on venosection and 5 month on Pegasys , For only 2 month my platelets was 220 first time in 28 years, and now after 5 month I'm injecting only every 14 days 90mcg and platelets is stable 220 and hct 40. Pegasys is good drugs but samtimes need time for same peaply , we are all different . You platelets is hight, and you must ask you heamo for advice, maybe you need hight dose . Best wishes!
I totally agree. I also believe that stress must play a part in the rising platelet count. I have been under tremendous stress since 2016 when this condition started and it went into overdrive last year when I had several major stressful events happening in my life. I changed jobs, lost my sister, had a longer commute to work and a much increased workload. We should do a survey on this and more research is needed. How can doctors say it isn't related when they don't know the cause? I have lost all Faith in the medical profession.
Hello....do sympathise with you....have a lovely haematologist and she told me that stress
definitely causes platelets to rise....and actually brought up the subject herself, when I was moving house and coping with an ill husband. In addition, a friend, who was looking after a sick friend, also experienced her platelets rising rapidly during that time. Anyway, stress is involved in all illnesses to a degree, should have thought. I do wish you well. My own platelets hovering around 1300 mark, so do understand the concerns. Kind regards. Tinkerbell
Not to be dismissive of my young haematologist, after all she’s doing a great job, but in my 20s I was invincible and stress didn’t touch me either. The thought of stress manifesting in physical symptoms seemed like nonsense when I was warned. Now I’m in my 40s, with platelet count through the roof, I’m a little less convinced.
Can remember in my early 30's visiting my father in hospital, following a major heart attack after his oldest friend had just died, (suddenly from flu) and discovered that all 12 patients in that ward had all been through stressful situations within the past 6 months....I mentioned it to the nurses and doctors who rather patted me on my head and said 'there, there'! And distinctly recall feeling I had uncovered a very important medical truth, i.e. that stress can cause disease, but that no one seemed to be aware or to want to know...now in my 70's I know it can and it does! You are very young and all the more do I wish you well. Tinkerbell
Actually you were correct. The study that I provided a link to above states that platelets are activated due to a chemical reaction in your body due to stress. And this platelet activation is related to cardiovascular problems both acute and long term. They tested the theory that stress activated platelets by subjecting the participants of the study to one of the most stressful things a human can experience...public speaking. It makes me realize that us stressing about our MPN's is only causing us more problems physically.
I’m not a doctor but I believe stress definitely has an effect on platelets. I’ve had ET for 11 years and PV for the last 3. My platelets were stable for years but then our family became involved with my brother last year (he was diagnosed with a mental illness and refused medication and was basically homeless). My platelets kept rising as well as my red blood cell counts and my doctor had to increase my meds. My brother moved back to his hometown a few weeks ago and I’m feeling much better. I go back to my hematologist in a week and a half to check my numbers again so we’ll see.
I hope you find ways to reduce your stress. You’ve gotten some good advice here.
I have been on Peg for 18mths and it is working for me. Platelets are down and side effects are bearable. I have tried to continue as I did before I was diagnosed. I would have thought your platelet rise would be due to a condition rather than anxiety. Remember the meds work differently for different people. You need to give them a chance and see if the results are what you want. If not talk to your consultant and discuss your options. For me it is important that I don"t make a big deal about this condition so it is not seen by me as an excuse for not living as normally as I can. Positivity is key and it helps massively. Good luck
The one fact of which you can be certain is that we're all very different, as becomes obvious the more you read on this site.
I am ET, JAK2 and older than you. After refusing to take hydroxycarbamide due to feeling as though I was dying from daily poisoning, I was put onto Pegasys with the warning that if I couldn't cope with the o previous drug then this would be worse. Wrong. It took 3 weeks for my platelets to reduce radically to the normal range. I have never dosed more than 45mcg. I have had every side effect mentioned but since starting in June 2018, my body has become more used to it as I have. You will manage to gauge for yourself the correct diet, exercise etc. and although I have dropped 20% of my work, I am determined to continue, despite some days when fatigue is saying 'no'. those are the days when, if I cannot fight it, I go with it.
You will read on here that some people have no side effects at all. I've never envied anyone but........
When I was fist put onto this I took three weeks off work and registered the whole issue with occupational health. Since then, I feel I have support but have never asked for any. I just get understanding from those who know I have the 'condition'. that in itself helps.
I do hope you can see a right way for yourself. 'We are all different and what works for you will not necessarily work for others. that's because we're all unique. X
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