Essential Thrombocytopenia ive been having a lot of bone pain lately is this normal or new?

[ALynnJohnston]

Essential Thrombocytopenia

Neoplasms

[Mazcd Partner MPNVoice]

Hi Lynn, yes bone pain is normal, lots of us get it. Maz

[ALynnJohnston in reply to Mazcd]

I was worried that my ET had progressed. I feel like cat on a hot roof

[Lab-Rat]

I am also having increasing bone pain, especially in legs and spine. I have ET Jak2+ and am on 90 mcg Pegasys every 3 weeks. Someone on this forum was prescribed an antihistamine to take for bone pain. I have tried NeoClarityne but it is not making a difference, so I shall try another type. Had bloods last month and for the first time since diagnosis results are normal. So I was expecting to feel tip top so do not understand why I am feeling so much worse than before.

[ALynnJohnston in reply to Lab-Rat]

Oh goodness I take two antihistamines a day! This explains why. I can only thank each of you for making me feel I’m not so alone or shipwrecked. It has felt for a long time that it’s my fault and tension due to pain and worry that somehow I’ve unconsciously made my ET worse! Thank you all for taking the time to make sense of what it is.

[linphy]

I too have ET jak2+ I take clopidogrel and vitamin d. I've been suffering these last couple of weeks with aching bones, my gp has put me on codeine had blood test for my vitamin d as in December my levels were severely low. Take care

Lin

[SuET2017]

Hi Lynn, yes I get bone pain (ET triple neg). My Haematologist did say it was not a symptom of ET, but I have read here and other sites, that People with ET do get bone pain??? I did have bone density scans done and all fine, so I am attributing it to the ET. It comes and goes. Sue

[Lab-Rat in reply to SuET2017]

Bone pain is a well documented symptom of MPNs, including ET. There are many academic papers on MPN related bone pain published in reputable Blood Journals to which your Haem should have easy access to. Bone pain is also included as a symptom in the MPN10 symptom tracker app developed by Prof Claire Harrison.

[ALynnJohnston in reply to Lab-Rat]

Should I try and speak to the Heam nurse? I really don’t know a lot about ET.

[Lab-Rat in reply to ALynnJohnston]

Yes, I think you should speak to your Haem Nurse.

[Indigo42916]

Yes, bone pain is real. I have it in lower legs. I have found extra walking and more water can help.

Take care

[socrates_8]

Hey Lynn...

Sorry to hear that you are suffering. As many above have also commented, unfortunately, bone pain can be a constant companion for some of us here.

Lynn, I am also a tad confused about your MPN condition:

Do you have ET (Essential Thrombocytosis) or/and you are also suffering from 'Essential Thrombocytopenia'?

In my understanding, 'Essential Thrombocytopenia' is generally where the Blood Platelets (BPTs), are falling below the normal parameters, and traditional ET, 'Essential Thrombocytosis' happens to be the opposite where the BPTs are at dangerously higher levels.

I usually suffer more from the later, and my BPTs are often up over the 1Million mark, with the normal range being between 150,000 to 450,000 ml/ etc...

In any event, I often suffer from back & leg aches, and lately quite a lot high on my left thigh just below the Illiac Crest of the hip bone.

I do try to stay as active as I can, and go out riding my carbon frame road-racing push-bike whenever I am up to it... (which apparently is less & less at the present), however I continue to endeavour.

To be frank about it, however, it does appear increasingly apparent to myself that the less I exercise, the less pain I am experiencing... It is a dilemma of sorts is it not?

We all need to keep active stay as healthy as one might, and really watch & monitor our cholesterol levels, which is much harder to maintain w/out exercise of course...

Anyways, best wishes and I hope that your pains will soon subside... Mine seem to come & go in waves...

Does anyone else notice this phenomenon?

Best wishes

Steve

(Sydney)

[ALynnJohnston in reply to socrates_8]

Yes it feels likes waves at times. Lately I’ve felt that I cannot get dressed cause the pain is intense

CBT, breathing, extra medicine from my Gp does help. However on very bad days sleep is all I really want.

[ALynnJohnston in reply to ALynnJohnston]

They have said it’s Essential Thrombocytopenia too many platelets, sticky clotting blood. I was diagnosed with ET went away thinking it was something aspirin could heal and didn’t give it any more thought. Then just after Christmas 2016 the bone pain came and I passed it off as a body flu. I would be so itchy and tired but my bones hurt. I started looking up about ET and got very scared of what the internet was saying. I put it to the back of my mind then my walking became hard I had to get a rollator and a walking stick for inside. My legs hurt my back hurt and moving around became a struggle. I started to feel this ET thing was taking over and perhaps I was unconsciously losing my sanity and reasoning. I was afraid to ask. The other day I thought I’d try something else so I somehow found myself here.

Thank you all for your help with this diagnosis that is part of me but not all of who I am (lately I have felt it’s taking over) I perhaps naively picture hyper muppets working too hard - the bone marrow, that by trying to be kind to self they can relax and the pain won’t be so consuming. Rest when tired, eat healthier and figure out why things are the way they are.

[JenngeetingR828 in reply to socrates_8]

Hi Socrates_8,

I have the bone pain too and mine is in my lower legs.. from the knee down the outer sides of my legs and calves. Standing and walking for longer periods make them hurt and I often find ways to try and keep them propped up. I don’t take anything other than baby aspirin- my numbers are in the low 600k range.. with a gradual progression of increasing since my diagnosis in January. Also told by my hematologist that “platelets don’t hurt” so my bone pain and numbness .. are most likely not related.

Frustrating when this site has so much great info I wish my doctors would read!!

I feel I should be on something to

[socrates_8]

Hi JenngeetingR828...

Yes, I completely agree, that it would be truly wonderful if all our GPs & MPN specialists were all up to date with answers concerning MPNs, unfortunately in my experience... such is not the case...

However, I do try to be a little fair, as many of those rare blood conditions are really quite new, as are many of the drugs & treatment regimes employed to manage them (circa 1.5 decades). Therefore, being a more patient, patient can be a challenge at times...

In your case, I am guessing that you might be younger than say - 50 yo, is that correct?

I have noted that GPs & many specialists tend not to start people on med's any sooner than they might need do... If they are younger than 50 seems to be one of their main considerations. No point starting ingesting all that toxicity any sooner than one needs is there?

Which MPN were you diagnosed with, (Guessing it's ET), is that correct? As you do mention high platelets, and they usually go with ET etc...

I was originally diagnosed as ET that was later reclassified as MF after my BMB results, however, my platelets are still too high most of the time c. 800-1M.

High platelets are often implicated as potential contributing causes of a TIA, (transient ischemic attack - minor brain stroke). Hence, keeping platelets under close supervision can be an important aspect of managing an MPN condition.

Hope something here helps a little...

Best wishes

Steve

(Sydney)