Jak 2 positive ET

[MaggieMagpie49]

Hi all you lovely, wonderful people, hesitantly I wish to join and ask somequestions. I was diagnosed with JAK 2 positive Essential Thrombothaemia last August 2017. My platelete count has never exceeded 700 but suffered from dreadful headaches and dizziness, I would also like to mention that my platelets had been high for a few years before being diagnosed.

I was put on Hydroxycarbamide 500 mg last August but suffered initial hair loss and constipation. But in the past couple of months the side effects have been gums bleeding and very tender, pins and needles in my fingers at night and feet in the morning, inside of nostril and eye lids sore for weeks, all very strange and now I am back with headaches... Does anyoneelse have similiar symptons. I'm in mylate 60s.... and otherwise fit. Thanks Maggie

[Swede]

Hi there,

I was diagnosed 2007-2008 and before that I had absolutely terrible head aches. I could not speak, think or do anything when I had them. They disappeared when I started on medication.I have had , I think,3 attacks since then, but a normal tablet of paracetamol sorted that out. I have not had any bleeding in my gums or so (I dont dare as I work in the dental profession and my husband, dentist, would be too concerned! ;-)) ) I think you should talk to your doc about it., to make sure. Take care

[MaggieMagpie49 in reply to Swede]

Oh thank you for replying, yes I have been to the dentist twice in aweek , she has refered me to the hospital for furthur check, but my gut feeling is the medication.

[LucyAshtonGeering in reply to Swede]

Hi,

Please could you tell me what the medication was stopped your headaches?

Thank you,

Lucy 🤯

[MaggieMagpie49 in reply to LucyAshtonGeering]

Lucy, when I was diagnosed the medication was hydroxycarbamide 500 and aspirin and within a few days the headaches seemed less intense , pretty much disappeared . Hope this helps

[Timjonze]

I get the pins and needles in hands and feet but not from Hydroxy as I’m not on it - have been told it’s a symptom of ET but it started the day after I began on aspirin so hard not to think it’s related to that. Hope everything goes well with the treatment and the effects level out soon

[MaggieMagpie49]

Thank you for that, I never considered the aspirin, will definately make further enquiries, thanks again

[amhann]

Hello

I had pins and needles for about 6 months before being diagnosed with ET JAK2+ but found they (and other symptoms) stopped after starting with aspirin - they did start up again when I started the hydroxy, but all have settled down now (8 months in). I have had some bleeding gums though and my wonderful dentist and hygienist are super careful with any cleaning (they and my haem both say hydroxy can cause issues) - if your dentist is happy that there is nothing dental going on, maybe talk to your haem? Many of us react differently to these medications, and it’s a bit of a balancing act sometimes!!

Hoping things settle for you soon. Anne-Marie.

[sschram in reply to amhann]

pins an needle nephropathy/ Check about being diabetic. There are over the counter B vitamins and another supplement which will help with that. The DR can prescribe I believe Mantix for that.

[MaggieMagpie49 in reply to amhann]

Thank you, that's helpful

[forwardocho]

Morning

I have ET Jak2 neg and I was diagnosed in January 2016. It sounds you are experiencing the side effects of HU. I too suffered with pins and needles and sore gums. I also had a lot of bone pain and my finger joints locking up which was extremely painful. All my side effects subsided within 6 weeks of taking HU. I found drinking litres of coconut water (or normal water) helped a lot as its imperative you stay hydrated, particularly regarding the headaches. I'm not a water drinker but soon became used to it. The only side effect I get now and again these days is fatigue and tiredness.

Regards

Angela

[Hidden]

Did your doctor also test your Vit B12 levels and thyroid? These can also cause headaches and hairloss, tingling in feet etc. just worth getting everything checked as it is possible to have more than one condition at a time.

[MaggieMagpie49 in reply to Hidden]

thanks ..I will look into this .. great having the input

[Sweetones]

I was diagnosed jak2 positive ET feb 2018, and put on 500 mg. Hydroxyurea 3 weeks ago. Prior to that I had no symptoms, besides a dvt in 1996, and stroke in 2002, from which I recovered. No one ever mentioned my elevated platelets or was concerned 😟 since they were only a little high for at least last 10 years. I have been having extreme fatigue and quick, random bone pains in arms, feet, and steady pain in my ring finger since starting hu, and worse I have been congested and sick for 3 weeks. In spite of being on low calorie diet and excersising, I have gained several pounds. Don’t know if it’s due to HU. Off course, besides possibly weight gain, the doctor says it’s not related to meds. Best wishes for your health.

[MaggieMagpie49 in reply to Sweetones]

Thanks and I hope you feel a bit better too, quite a few have mentioned the fatigue and finger and bone pain ....to date that hasn't hit , fingers crossed.

[Jings in reply to Sweetones]

Hi Sweetones, with regards to weight gain... It's in the blurb re Hu. I am experiencing weight gain and mentioned tihis to my Haem to which she replied that it sounde like an endocrinel problem ie thyroid..but as I' ve said it's in the meds blurb.

Having said that I think the Hu could be interferi g with thyroid function.

[bjay22]

I was recently diagnosed ET jak2 positive and also was experiencing pins & needles in feet & fingers at night, but this tingling happened right before starting HU. Once I started HU and my platelet count began to lower, the pins & needles have pretty much gone away. I rarely experience them now. Don’t have any gum problems and sure hope I don’t because I had dental implants last Summer & don’t want them to fail.

[MaggieMagpie49 in reply to bjay22]

Gosh nobody seems to get the pins and needles whilst being on the medication, maybe I should ask about changing that and I am quite concerned about my mouth

[Hidden]

Hi Maggie

In response to your query I also have ET Jak2 positive and have experienced all the symptoms you mentioned. The droopy eyelids intrigue me. I tend to experience this more often lately. I have no idea what causes it. I hope you have a good Haematologist as MPNs are a rare condition and unless you are fortunate enough to have an MPN specialist then it is likely you will know more about your condition than your Doctor. I keep a copy of a booklet produced by the Leukemia Foundation in Australia about MPNs in my Hospital bag. Last time I ended up in Emergency the Nursing staff and Doctor had a quick read through it and it remained in view throughout my hospital stay. 1 in 100,000 approx. have ET so I think that it is only fair that I help educate the medical professions I come into contact with as a result of my condition. I have not had my platelets fall within the normal range on any of my Full blood count results taken since 2006. I have been taking Hydrea 500mg daily since January 2016 and this has resulted in my platelets falling from 1,000 to around the 560 range. I would love to know if this is normal. My Haematologist receives my blood result every month and has not shown any concern. Cheers Anna