Hi I’m new to the forum - ET JAK 2 Negative - w... - MPN Voice

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Hi I’m new to the forum - ET JAK 2 Negative - waiting on the results for a second BMB to exclude Pre - Fibrotic MF

SP-2008
SP-2008

Hi all and thank you Maz for accepting me onto the forum. I do wish I had come across you when I was first diagnosed back in 2008. I’m sure it would have helped me more with understanding and accepting my condition better.

A month ago my new Haematologist, the previous one has now retired, suggested, for a few reasons, I retake a BMB, 1, my haemoglobin levels have been on the low side consistently at around 121- 117 for as long as I have been under her care, which is almost one year. 2, the previous BMB, back in 2008, could not be used conclusively to rule out pre fibrotic MF. Also recent blood test has shown me to be CAL R Positive and a recent CT scan of my Spleen has showed up to be 15cm. I’m now waiting with a brave face about what the future holds for me. Especially after the trainee Haematologist who carried out the BMB struggled to extract the bone marrow 2 times and said its “probably due to fibrous marrow,meaning MF”. But whatever it is, I am determined not to let this condition get the better of me so I can spend as long as I can with my lovely family.

After reading many of your posts I feel encouraged to learn more from you and together with you to make a difference. But at this time I am going to be playing catch up with understanding this condition.

So for anyone that can assist me with 3 main symptoms that I have and anyone may share with me.

1 - does anyone have poor tolerance to exercise. Mainly Impact exercise causes delayed post exercise fatigue and headaches and unable to build up stamina or strength.

2 - aspirin caused a stomach ulcer and Anaemia - has anyone tried copidogrel, how did you get?

3- Lots of food sensitivities causing bloating which may also be causing my lower back issues. I have been diagnosed with irritable bowel syndrome, but this diagnosis doesn’t sit right with me. Maybe it’s because this is a tuff one for me, as I still have a very healthy appetite. 😊

I will keep you all posted with my BMB results.

I could go on but these are the main ones I’d like some help with. I’m learning a lot form the post on this forum.

Thank you

17 Replies
oldestnewest

Hi SP-2008, a big welcome to this forum. I joined in 2012 after being diagnosed with PV and it was the best thing I ever did. As well as information you will make loads of lovely new friends.

I think almost everyone has trouble with fatigue and there’s no miracle answer. Sometimes I find exercise helps but I do get to the stage that I have to rest. Be guided by your body. Plenty of fluids plus as healthy a diet as possible helps. I can’t take aspirin because my stomach hurts after any anti inflammatory medication but haven’t tried anything else yet.

Sorry I can’t be of more help but I’m sure others will soon post also.

Kindest regards Aime xx😺😺

Hi Aime, thank you for your reply. I believe any advice is good to consider, if anything it is s reminder to us all of what we know can work for some. I’m actually in France at the moment with the family, and the heat is like stepping out into an oven, so drinking waters not an issue. The diets a little more challenging, as I’m over indulging with things I perhaps should not eat. But hey holidays are to enjoy and have fun. And the rest from work is doing some of my symptoms some good. I’ll get back to healthy eating once I’m back in the UK. Thanks again for your reply. Take care,

Paul xx

Hi SP-2008,

Welcome to the forum. I was diagnosed with ET Jak 2+ in 2016. This is a great place to learn about your condition.

I personally can’t relate to any of the questions that you have posted, but I do know that there are a few people on the forum that take clopidogrel, so hopefully they’ll respond.

It sounds like you’ve got a good haematologist. I hope the BMB results are favourable.

Mary x

SP-2008
SP-2008
in reply to mhos61

Thank you mhos61 for your reply. Glad to hear your not sharing any of my symptoms. Looking forward to hearing from some others. Paul x

Hi sp,i'm jak+, was on aspirin & hu until stroke 2015, stroke consultant switched me 2 clopidogrel after discussion wiv haemo, her personal opinion was it was better 4 me,i was diagosed around same time as u,2008, & like u only found this site recently,i totally agree wiv what mary says & it seems u ave found a gud haemo! What meds r u currently on? Atb & warm welcome,tina x.

SP-2008
SP-2008
in reply to Tico

Hi Tico, thank you for your reply. After years of using aspirin which really messed up my digestive system my Haematologist at the time recommended I try Clopidogrel which I’m hoping to start soon. I guess you’re not experiencing any poor symptoms with Copidogrel?

Hi paul, seriously wudn't be able 2 tell as i take a lot of other meds,start rattling wen i walk now! Lol,do suffer fatigue,more so recently & defo more bone pain.r u on hu? What r ur platlets like & r u pretty stable? Atb.tina.x

SP-2008
SP-2008
in reply to Tico

TI’m low risk at the moment with my platelets stable at anywhere between 620 - 800 and have been for a few years since I corrected the Anaemia caused by aspirin, so no meds required except an anticoagulant and a top up of Iron supplements when my iron levels sneak down to below the reference level. Which nowadays I can tell when as I start to feel pretty crap when the do. Stay well and speak soon. Paul x

Hi and welcome to the forum - you will find a great community here and lots of help.

I was diagnosed with ET JAK2+ a year ago and prescribed low dose aspirin and hydroxycarbamide. Following diagnosis of a minor TIA last month I was switched into clodripogel as a stronger, gentler and more effective alternative to aspirin. So far it has been totally problem free - no side affects whatever. I hope it helps you on your ET journey too.

Good luck, and remember is always someone here to help.

John

SP-2008
SP-2008
in reply to Ovingite

Thanks John - really appreciate your reply. Paul

Welcome! You will find a great deal of info and very nice supportive members. I hope that your results provide a clear path for treatment.

SP-2008
SP-2008
in reply to mammared

Thanks Mammared for your reply. I will keep everyone updated with my results. Paul 👍🏼

Hi SP-2008.

Welcome to the group.

I have Et Calr.

I started taking Asprin after my stroke 10 years prior to ET diagnosis. My stomach started to become upset so I switched to clopidogrel. I have noticed no difference between the two. I still ended up in lanzoprozole which I now take at night before my other meds.

Hi SP-2008,

I am new here too - only one week - and so far I have found it reassuring for reading other peoples symptoms and stories has helped give me an overview. I don't feel so isolated and alone anymore. I relate very much to 1 and 3 of your questions, even though unlike you I was diagnosed with PV JAK2 positive in 2006. In fact I'd been referred to a rheumatologist the year before due to fatigue, muscle and joint pain, for it was thought I may have fibromyalgia or chronic fatigue syndrome. Nothing conclusive came out of it but I came to realise I had to pace myself. I have since wondered how many other people with fibromyalgia and CFS are undiagnosed MPN'ers? I was also diagnosed with IBS and can't help but feel it is connected to my blood disorder in some way. Like you I love my food but I have to be really careful with what I eat and how much or I suffer the consequences.

Good luck with your BMB results.

Best wishes Sandra

SP-2008
SP-2008
in reply to SR-67

Hi Sandra, your reply has made me feel better in the thought that I’m not on my own. For many years before my diagnosis I felt as if something was not right and it started with my digestive system. I also suspected fibromyalgia or CFS for sometime but despite quitting drinking alcohol and smoking and leading a healthier life style nothing really helped my symptoms. Then I was diagnosed with ET but I was told by my haematologist that many of my symptoms were not to do with ET. By researching my condition more, it appears they may of been. Thank you again for your reply. I’ll post my results once I have them. best wishes, Paul

Hey Paul... :-)

Yes, I am sure that we can all agree our initial diagnosis can be overwhelming, and made especially more so by the general lack of consistent knowledge surrounding MPN conditions.

My name is Steve, and I am based in Sydney, however, we have the world wide web these days & speaking with all the lovely people here has been the best tonic I have found since my diagnosis in 2016, even though I suspect (certain really), that I have suffered with this condition for a great deal longer...

Personally, I found aspirin a problem initially, and have been taking a 100mg daily since then. In the earlier stages, I eventually learned that the aspirin was probably causing portal vein bleeding, and exceptional nausea. Once I switched to 'Enteric-coated' aspirin, the alleviation of those conditions increased to the point where they are not much of an issue for me today.

Initially, I was also ET, JAK2-, and later learned that I was CALR+ Type2, with ASXL1 mutation, (now MF). My first BMB showed a Grade2 level of scarring...

... however, that has now somewhat improved to Grade1(?)

In an earlier post of mine I go into much greater detail about what I believe are the benefits of exercise & diet/intermittent fasting.

We all suffer from CFS, I also have bad Restless Leg Syndrome RLS, cold sweats, anaemia, breathlessness, low grade temperatures, headaches, light-headedness, mental fuge, some peripheral vision issues (from time to time), and bone pain of course...

However, again, all of these symptoms are improved more generally since being able to rebuild my strength & capacity through and via my exercise regime...

My doctors however, believe that the Ruxolitinib of 25mg bd, is more likely as the reason why? However, I do not share that view entirely, while there is generally a reduction of the overall symptom burden that I did initially attribute to the Ruxolitinib, and especially in spleen reduction, and mental fuge... The logic for me just is not there...

Yes, it was VERY hard, especially at first... (to create and consistently adhere to an exercise regime), but I persevered, and I believe between that and my diet I can correlate much improvement overall...

Nevertheless, we are all a tad unique, and what might work for one might not for another... Starting out very slowly (baby-steps) has really worked for me though...

Best wishes Paul

Steve

SP-2008
SP-2008
in reply to socrates_8

Hi Steve

Thank you for your reply. You’ve done so well to reduce you grade level of scarring down to 1. And you’ve committed yourself to a healthy exercise and diet regime, which sounds very much like it’s paying off. I too very much like to eat well and try to exercise, but having always been a sporty person, I’m struggling to come to terms with not being able to exercise without adverse symptoms. I hope I can learn to be patient like you and take small steps.

I look forward to keeping in touch.

Paul

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