Thrombocythemia.

[mjfin72]

Hi I'm new here having just recently been diagnosed with Essential Thrombocythemia. Following blood tests for issues with stiffness and joint pain in both hands and feet along with other symptons, discovered my platelets have been steadily rising for last 5 years. They are currently around 850. I was wondering does anyone else with ET suffer from similar symptoms? I am currently taking daily aspirin. Any advice would be greatly appreciated. Thanks

[mhos61]

Hi mjfin, welcome to the forum. I have ET (JAK2+) and yes my joints did begin to ache a bit more than usual leading up to the diagnosis. There were a couple of mornings on waking my hands were stiff and hard to open from a fist, if you see what I mean. However, since starting hydroxy and aspirin this hasn't happened and my joint pain has improved. I still have the wear and tear pain from time to time though (age 61). My main symptom is fatigue.

Do you know if you're jak2+?

Mary

[mjfin72 in reply to mhos61]

Hi Mary. Thank you for replying. I'm jak2 negative. I have had stiffness and joint pain for approx a year now. Started off evenings and mornings just as you describe. Once up and about the stiffness eased off but it is pretty much constant now. I also have fatigue and muscle weakness in arms. My gp originally thought I might have lupus tho have tested negative for this. If I knew the symptoms I have were due to ET I could settle a bit knowing there isn't anything else like lupus going on. ET diagnoses was quite a shock but it's great to have forums like this to talk to people like yourself who are going through this also.

[mhos61 in reply to mjfin72]

Hi again, I was only diagnosed earlier this year after a routine blood test highlighted platelet count at 500. I have found this forum very beneficial as I have found ET to be quite a complex condition. I am still learning the different aspects of MPNs but in bite size chunks. By talking with others with the condition you will learn so much and feel supported at the same time. You will also find that the people on here have various symptoms including joint pain with their MPNs.

All the best

Mary

[mjfin72 in reply to mhos61]

Hi Mary. It certainly does seem quite complex and it's difficult not to get too overwhelmed by all the information. Best to take each day as it comes. Going to see my gp in a couple of wks to have a chat with her and try to get bit more information. Thank you again for responding to my post . Take care.

[Jane-r]

Hi mjfin

I was diagnosed with ET Jak2 positive in late July. My platlets had been high for a few years up to then but doc said nothing to worry about . Then test for Jak2 positive meant that I went on aspirin and hydroxycarbamide in July this year.

Last year Before diagnosis I suffered from odd pains in my feet, especially stiffness in ankles/heels in the mornings , sometimes hands as well. Then started with burning, stabbing pains and itching in my big toes which made it increasingly difficult to walk. Nobody knew what it was and I was beginning to think I was going mad. However as soon as I started the aspirin it was instantly relieved. Hydroxy also halfed my platlet count from 858 to 359.

Still a little stiffness now and again in feet on getting out of bed but nothing like before.

I found this forum extremely helpful to find that we all seem to suffer from these odd pains (though it was all in my mind before this as very hard to understand symptoms of ET)

Hope you find medication and the forum helps you.

Good luck

Jane

[mjfin72 in reply to Jane-r]

Hi Jane. Thank you for responding and you have made my day. Your description of the aches, stiffness and sharp shooting pains is exactly how I am. When the shooting pain comes in same big toe every time it takes my breath away. So reasuring to know others with ET are having similar symptoms. Sometimes i feel like a hypochondriac and as you said feel all these symptoms are in my head. I can't remember the last time I felt normal. Anyway have only been on aspirin for a couple of weeks and as yet the symptoms haven't eased but maybe early days yet. My consultant isn't prescribing anything other than aspirin at the min. So glad I joined this forum and so grateful for all the kind responses.

Take care

Mandy

[Jane-r in reply to mjfin72]

Hi Mandy

Glad to help. I was just like you felt like a hypochondriac. Felt like someone was stabbing me with red hot poker in big toe and then would move to other foot another times and also took my breath away. I even went to chiropodist and was treated for ingrowing toenails, but it was more like nerve pain. Coming and going. Eventually went to a foot Doc and he thought it could be to do with blood, poor circulation causing it!

I was relieved to hear others had similar things from this forum too. It explains a lot!

Hope yours soon getting sorted.

Jane

[Mazcd Partner MPNVoice]

Hello, welcome to our forum. We can all understand how you are feeling at the moment, it can be overwhelming when you are diagnosed. I would suggest that you read as much as you can on our website mpnvoice.org.uk, this has a lot of information on all the MPNs and the various medications used to treat them and also lots of useful hints and tips on managing symptoms, there are also some very helpful and informative videos from haematologists and patients, and I can send you some of our information booklets as well if you would like some, just email me your postal address, [e-mail]. Best wishes, Maz

[mjfin72 in reply to Mazcd]

Hi Maz. Thank you so much for responding. I'm quite overwhelmed at the kindness and support from everyone who have sent me a message. I have had a look on mpnvoice recommended by my consultant but feel more reassured hearing from people actually living with the condition. Trying to be positive and thankful that at the min I can manage my symptoms. Being told I have ET wasn't the best news in the world but it certainly wasn't the worst and so am counting my blessings.

Take care

Mandy

[Diam]

Hello mjfin. Glad you joined. I have only just joined in the last few weeks. I have ET and was diagnosed 2 + years ago when my platelets rose to 1300. It was my burning feet and hands and the extreme exhaustion. I take Hydroxycarbonmide and Asprin daily and my platelets are now steady around 480 to 600. My joint pain comes and goes. Some days are good and other can be terrible. Pace yourself with whatever it is you have to do and manage your time allowing for plenty of rest. I still work 3 days a week, hoping to retire in a couple of years when I reach 70, so taking things steady. If I don't I literally collapse with exhaustion. Take care

[mjfin72 in reply to Diam]

Hi Diam. Thank you for your reply. I find the fatigue hard at times too especially as I work pretty much full time and am on my feet all day but I try and rest as much as possible when I can. It's reassuring to know you are still able to work tho I'm sure you are looking forward to retiring. 😊think having a positive attitude is important and try not to let the condition take over your life.

Best wishes

Mandy

[Mardigras]

Hello Mjfin,

I'm sorry about your discomfort.

I was diagnosed with ET this year (Jak2 positive), and am beginning with the special people on this site, to understand a little more about this disease.

I too suffer from pains and stiffness in my joints and burning in my hands and feet

In the centre of my right palm the pain can be incessant for hours. It keeps me awake at night. My fingers are very stiff and swollen.

I also have trouble with my ankles which are always swollen with fluid and some days are really painful.

My fatigue levels seem to keep me much less active than I was and this can be a problem too.

This seems to be worse since I started hydroxycarbamide, so I intend asking the haematologist if there is something else that I could try.

I try and do what I can in the morning when my energy levels are peak.

I really hope that you are able to get some relief from your symptoms. It appears that there is NO 'one size fits all', and we are all battling differing things.

Best wishes,

Marcia

[mjfin72 in reply to Mardigras]

Hi Marcia. Thank you for your reply. I'm so glad I joined this forum. I very nearly didn't. The support and kindness from everyone is amazing.

I don't have any swelling on hands and feet just stiffness and pains. I am forever dropping things and don't have much strength in my hands now. It's very frustrating but feel better knowing it is a symptom of the condition. My consultant didn't think it was.

Just have to take things a day at a time and stay positive.

Take care

Mandy

[lizzziep]

Hi, I have ET too, it is very daunting when you are first diagnosed, especially if you Google it!! I was diagnosed 5 or so years ago, I was on HU for 3 years and am now on Anagrelide, also aspirin. I have a lot of joint pain, mainly due to arthritis but I think the ET tops it up!

Best wishes

Lizzie

[mjfin72 in reply to lizzziep]

Hi Lizzie. The Internet is great for gathering info but can also throw up some scary stuff. Trying not to get too ahead of myself and thinking what if? I'm just trying to take every day as it comes and am grateful for all the support on this forum.

Take care.

Mandy

[FJOS]

Hello MJfin,

Welcome to the forum. I am also quite new - only diagnosed within last year. My own GP did not have any knowledge of the condition and told me to "Google" it! As you can imagine, I went into information overload as a result but was able to handle it when I got over the initial shock! When I joined this forum I got better advice on where to look for less stressful information than you may get on google!!

My levels were 1000 on commencement of hydroxea last May and are now just over 600. I am on 1000 mgs for 3 days and 1500 mgs for 4 days each week - total 9000 mgs a week. I attend the cancer clinic at my local hospital for reveiw every 6 weeks now down from every 2 weeks originally.

I too suffered increasing joint pain in my hands and feet over a number of years which my GP put down to arthritis and prescribed diafene which has caused some problems. I am also on statins and asprin for my cholesterol for about 40 years (now 71!). I purchased phyisiological shoes called "MBT" shoes which have given me great relief in my feet and have me walking again after years of pain. I am also playing golf again and enjoying it better than I had for years. I regarded my progosis of ET (CALr) as a blessing in that it gave me the motivation to finally retire recently after being a workaholic all of my life. I now have time for my golf; my four children and partners and my four lively grandsons who frequent my house most weekends - my wife died over nine years ago from another illness.

I am happy to have the condition recognised rather than suffer any of the possible consequences of the illness. I trust the professionals to treat my condition and I get on with enjoying life to the full. That is the best advise I can offer to you too - enjoy every day and treat it as a blessing!!

Regards,

Frank

[mjfin72 in reply to FJOS]

Hi Frank. Thankyou for responding. I'm glad you are enjoying retirement and spending time with your family. That's what's important. As I said in an earlier post I had myself petrified reading a lot of stuff online about the condition and mpn''s. Reading that Mpn''s are referred to as blood cancers gave me a fright. Who knows where this condition will end up and no point worrying about what ifs now. Need to practice my mindfulness all the more and live in the moment 😊

Take care Frank

Mandy

[socrates_8]

Hey mjfin72 ...

Welcome to our exclusive little club.

As you are no doubt finding, there is so much help just talking to the people who frequent this amazing website, I was really a tad despairing until I found my way. Largely thanks to many of the wonderful people here, of whom are only too willing to assist each other.

It certainly can be overwhelming at first... be patient with yourself as it can take a little time to adjust.

I was also recently diagnosed in May, 2016. I am Post ET (prefibrotic) Myelofibrosis (MF). As you might learn, sometimes our condition(s) can and do transition from one state/stage into another. However, many also stay stable over many years and live and almost normal life...

I am also JAK2 negative, however, I persisted with other genetic tests to eventually learn that I have a similar but different cell mutation called 'CAL-R'. Talk to your specialist about further genetic tests, if you feel that learning more about your condition is essential to your own peace of mind etc...

All the symptoms that you have mentioned (& others you have not as yet), can be common to our MPN suite of symptoms.

Some of the treatment drugs can induce and exacerbate various symptoms from time to time, and other symptoms I am afraid will be long time companions, forming a part of our various types of disorder etc...

Most importantly, you have found this website, and now know that you are not alone and that there is always someone here to speak with to assist by sharing, as all the good folk here do so effortlessly...

Maz, in a previous posting recommended searching the MPN Voice web site for further resources in an effort to better appraise yourself of many of the nuances that you might find yourself subjected to...

Try to be a tad patient with yourself... There is a great deal to take in (over time), I know I am extremely the contrary, and it would help me no end to just stay calm and poised (as much as possible).

Best wishes with your journey

Steve

(Sydney)

[mjfin72 in reply to socrates_8]

HI Steve. Thank you for responding. Sorry to hear you have progressed to MF. I know ET might progress but trying to remain positive and not get ahead of myself. I'm grateful that at the min my consultant is happy to treat just with aspirin.

I have a string of symptoms as you say that I haven't mentioned. It's been a long year never getting to the bottom of it and only through being on this forum am I realising they are down to the ET. My gp thought/still thinks I might have lupus. Through blood tests is how discovered my platelets were high.

I will try to be patient and not so frustrated with myself. I'm 44 but some days feel decades older.

Thank you again for replying and to everyone who replied. It's very much appreciated.

Take care

Mandy

[socrates_8 in reply to mjfin72]

Hi again Mandy...

I am not MF, as yet, but in the process of transitioning. That could happen slowly over a long period, or much faster...

Part of this annoying condition is that there are so many unknowns. That is precisely why I seek to inform myself with research and knowledge.

I am not sure if you have mentioned it or not, but I was curious... Have you had a Bone Marrow Biopsy (BMB) completed as yet? If not, that might also assist you confirm your condition either way... just a thought.

Best wishes Mandy

Steve

(Sydney)

[mjfin72 in reply to socrates_8]

Hi Steve. I haven't had a bone marrow biopsy done..... Yet. I'm sure that will come before long. You mentioned about the other genetic testing. When last with the consultant more bloods were taken and he said he would test for calr and something else that I can't remember now.

I agree with you its frustrating not knowing how or when the condition will progress or even if. It also frustrated me a little that consultant didn't seem to really take on board all the symptoms that I was explaining. Suppose they don't have all the answers sometimes either. Which is why I'm glad I found this forum and can talk to people living with the condition.

Take care.

Mandy

[socrates_8 in reply to mjfin72]

Hey again Mandy...

If you have the genetic testing done, they can also help to determine your condition, one way or the other... ?

The BMB, can reveal whether or not our bone marrow is becoming scarred, or it could also be quite healthy in appearance. But the Aspiration on a slide can reveal how the cells structures are behaving at the molecular level.

It really is quite a fascination...

In any event, it will be interesting for you to learn about your genetic testing. Aside from the JAK2, there are also BCR-ABL, MPL, CAL-R and a few other lesser known mutations etc...

Yes, I agree with what you also said concerning the medical fraternity... Medicine is certainly no exact science, and our GPs may be good, however, this is a specialist field of Haematology/Oncology really. So really, it is not so surprising I guess at their lack of edification.

And yes, we are all here anyways...

Enjoy your w/e Mandy.

Steve

(Sydney)

[Hidden]

Welcome! I was recently diagnosed with ET - JAK negative. I was relieved to know that the weird symptoms I'd been having for a while actually had a cause! Fatigue, aching bones, itching and headaches tend to be my go to symptoms. You've found a great community of resources and caring folks. I think knowing that I'm not in this alone has been a huge boost to my spirits. Take care!

Jason

[mjfin72 in reply to Hidden]

HI Jason. Thank you for your reply. It is a relief. My consultant wasn't convinced that my pains and stiffness were related to the ET. So had myself convinced something else was going on aside from ET. It's good to be talking to people who have the condition and know their bodies and how they are feeling.

This forum and the people on it are a godsend. It's nice knowing strangers will take time out of their busy lives to give someone a bit of support.

Best wishes

Mandy

[Jennifer1974]

Hi Mandy,

I'm recently diagnosed as well (2 months ago). I'm ET JAK2+ . Didn't have any symptoms until my platelets reached 600s. At the moment they're staying in the 600s. I'm on aspirin only too. I found it takes a bit to to feel benefits of aspirin therapy. But my headaches are gone now and the tingling in my hands and feet is minimal. I have some aches and pains now and again and bouts of fatigue. But I'm feeling pretty good lately. This forum has been very supportive. Hang in there!

[mjfin72 in reply to Jennifer1974]

Hi Jennifer. Thank you for responding. My symptoms started last summer and have been progressively getting worse. My platelets have been steadily rising since 2011. I'm hoping that with a few more weeks on aspirin I'll start to feel a difference. It's pretty uncomfortable especially as I'm on my feet all day at work. I'm glad your symptoms have eased off and hope your platelets remain stable.

Take care

Mandy