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Painful digits!

I know several of mpn's sufferers have spoken of this problem before on here about our fingers & toes turning blue & painful. Researching it the only conclusion i can come to is because my mean corpuscular volume, (mcv's) are alway's so high which after more research is more than likely down to the high dose of hydrea i take. I would like to know if anyone is prescribed anything for it and if so what? Also as anyone mentioned it to their haematologist and what did they say? Atb, tina🤗

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Looks familiar. The same thing happens to me. How do you post a picture on here? Then I can show you my hand lol Nah, it has nothing to do with MCV...that just indicates the size of your red blood cells. Basically the only reason a doctor even looks at MCV is it can indicate reasons for anemia (if you're anemic.) For example red blood cells get bigger with alcoholism and smaller with iron deficiency.

My doctor didn't care about my blue hand and dismissed it. I just pop an extra aspirin when it happens. It's scary looking though!

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Hi clubdino, their are several reasons your mcv's can be high, alcholism, b12 deficiency, medication in particular chemo,hxdrea being top of the list. I don't drink,b12 as been checked and is fine. I do take large dose of hydrea and always have,research indicates one of the symptoms of high mcv's are 'blue digits. Average mcv's levels are around 80-96, mine were 123-3, around a month ago. They have always been high,sometimes nearly touching the 150 mark. Some on the forum once mentioned high mcv's, can't remember what their haemo said. I'm at hospital on the 27th, looks like another discussion again. Sometimes i wish they could walk a mile in our shoes with the pain and other symptoms we tolerate! Atb,tina.🤗

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Oh, I know there are many reasons to have a high MCV and a low MCV...I hope you didn't think I was calling you an alcoholic lol. 😵 I was just giving examples. A couple years ago I had a low MCV because I was iron deficient and my fingers and tongue were still turning blue. But, you know, if the doctor's hand turn blue I bet they wouldn't blow it off so easily.

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Lol, told you how high my mcv's were last month, the same month, gp tried to put me on iron tablets! My hemoglobin have been dropping,i refused to take them and informed i would improve it by diet alone. I know your iron levels are measured by adding adding certain levels of the full volumes of the rbc's not just hemoglobin alone,my mch are higher than normal.mhos61sent me a link,saying Hydrea can cause discolouration,proving my theory more than likely. Atb,tina.🤗

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Yeah, I read that article. It had some good tips. Out of curiosity why are you against taking an iron supplement? When I was iron deficient I could barely climb a flight of stairs without grasping for breath and I felt so much better after taking the iron pills for a couple months. Or are you saying that your doctor shouldn't have come to that conclusion without doing full iron studies? Your blue fingers are different than mine...when it happens to me all my fingers turn blue (not just the tips) and my hand turns bright red.

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Do your fingers ever turn transparent? Basically,the white effect? The picture i posted were mild, sometimes fingers ,toes are worse. The tongue the most painful by far! Atb, tina.🤗

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In answer to the iron question, i took them once made my stomach bad and vomiting,plus i take a lot of other meds for other medical problems. I already rattle! Lol. I try to shrug a lot of the symptoms off and carry on. Starting to become a bit exhausting and painful lately.😩 Atb,tina.🤗

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No, my fingers don't turn white. Just red and blue. And it usually isn't very painful but just has an annoying numb sensation. My tongue scares me the most though because the thought of losing that body part is horrifying.

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I don't know how to take a picture when replying only when posting or i would show you. I agree about tongue,i have to run to put it under warm running water! I am fed up with the discussions with haemo about it. He might have seen them,he dosen't feel the pain,if only! 😡lol. Atb, tina.🤗

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Yeah, the iron pills sometimes gave me digestive issues too. I just started taking them on a full stomach. I know you're supposed to take iron supplements on an empty stomach but it wasn't worth the nausea. I don't take them anymore.

Well, I understand you when you say you are fed up talking to your doctor about it. I became so fed up with doctors that I haven't even seen one in over a year. I know that's a no-no but I was so DONE. Plus I used to have great health insurance and now I have crappy health insurance that requires me to spend $1500 a year before it even kicks in. At the moment I don't take any medications at all except aspirin. My ET has never been very aggressive. I hope you feel better soon.

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Have you ever had any symptoms or problems? I've had 2 strokes.tina.🤗

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I've had ocular migraines and blurry vision. Once when I was in the hospital for an allergic reaction the nurse gave me an injection of Benadryl through an IV catheter and suddenly I couldn't understand my parents words (it was like they were speaking Chinese) and I couldn't speak clearly and I lost part of my vision temporarily. I'm pretty sure that was a TIA related to a blood clot that was in my catheter. I told the nurse about it but she didn't seem concerned. I let it go because I assumed that even if it was a TIA it was brought on by extenuating circumstances. I've battled some pretty bad joint pains over the years but not sure if that's related to my ET. The joint pains have gotten better since I've started intermittent fasting. I've gone through periods of low grade fevers that come and go for months and then suddenly disappear. What did you experience when you had your strokes? And have you had any long term damage from them? How long have you had ET?

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Yes to several of your questions! It sounds like you definitely suffered a tia,joint and long bone pains,ie, femur bone, spine. Night sweats and low grade fevers. I was diagnosed 11 years ago but like many on here suspect i had it longer. First stroke was just before i was diagnosed, temporary went blind and collass

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Sorry clubdino, aliens,lol. Temporary went blind and collapsed. Refused to see doctor.mri later found the stroke then while on a high dose of hydrea and aspirin had significant stroke. Very limited use at the time in my left arm problems with vision, cognitive problems,mood swings,And now... through intense physio, only slight weakness in arm,altered sensation in fingertips,sight resolved itself, when i came out of hospital could no longer text,didn't make any sense, can now text (slowly).and still with some difficulty. I believe physio and my determation and strengh got me through it. I had to relearn alot. tina🤗 p,s. With your symptoms i think you really do need to see an haemo and be on meds.whats your counts?

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Wow. You've been through a lot with your ET. I can't imagine how frustrating it must have been. How high were your platelets when you had your strokes? My platelet count has never gone over 533,000...that I know of. So neither one of my hematologists wanted to treat even with the fact that I had a possible TIA. The TIA incident was like 15 years ago and it hasn't happened again. And I haven't had an ocular migraine in over a year. I tried talking to my hematologist about starting treatment when my fingers and tongue started turning blue but he still didn't want to start treatment. Are you concerned about MF at all since you are experiencing night sweats and bone pain? I know I should start seeing a doctor again but honestly all they ever did was blow me off so I decided to take a break. I'll go back eventually. Have you had a BMB recently?

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Truthfully about MF, no i'm not going to waste my life worrying about something that as a slim chance of progressing. Been near death before,not including the last stroke in 2015. Think it made me stronger,only when i'm around my grandchildren i'm like putty,also my adorable cat,sox, the Boss in my house. My platelets were well over a thousand at the time of the strokes. I have the bone pain a lot recently and the night sweats,a lot of us suffer from them, i think we get used to it, i do. I never knew i was going through early menopause because i was so used to sweats! I have only had 1 bmb, at the time of diagnosis. But i would implore you to see a doctor given your past and present symptoms. Atb, tina.x🤗

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I have it on my to-do list to find a new doctor. I actually live 5 miles away from world renowned MPN expert Dr Spivak but they never returned my calls for an appointment. It was disappointing. I am scared of hydroxyurea bc I have a family history of skin cancer. But I'll figure it out eventually. Menopause is coming for me and I'm not looking forward to it. I guess when you have experienced what you have that you learn to appreciate every day. My dogs Dino and Cuatro keep me going. They make me be active even when I don't feel like it. 🐕

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You would not necessary be put on hydrea,their are different drugs for mpn's and more and more being trialled all the time. I can't say and don't know if i had any side effects in the begining of hydrea because my symptoms were so severe before i started it,massive weight loss, balance problems, people thought i was dying i was so ill. Within a few months a light came on and i slowly started to recover, it gave me back my life as i knew it. I think that is another reason i tolerate a lot now because of that too. I'm thankful i'm still here to say that! Do you have any close family? tina.🤗

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You lost a lot of weight from the ET? Man, why can't I get that symptom?Lol. I'm kidding of course. Balance problems sounds horrible. My mom and I just connected again but she isn't very supportive when it comes to my ET. She tells me "it's JUST a disorder." Her and my stepfather never really ask how I'm doing. I have a daughter who is 22 and she is just kinda living her own life. And I'm single so I don't really have anybody to talk to about my ET....that's why I love these messageboards. It helps to talk to other people who understand the struggles. Are you able to work anymore?

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Lol,don't worry i put all the weight back on and a couple of stone more! Overweight now,lol and i don't care. Regarding work, i can't do the job i used to do,really wished i could. I was an heavy duty pallet and wooden case maker.i would be restricted in cold environments because of hands. I have an appointment next week to discuss retraining and volunteering in some way,anything save me claiming jobseekers.makes you feel bad and demeans you. Feel for you, that you don't have a close relationship with your family,my daughters 22 in april. She is married and as given me 2 beautiful grandchildren,charlie 3 and madison 5months. They are my life and motivation. I was married for 20 years,been separated for over 4 years now. Just me and my cat and they don't answer back! Lol. Try to make it up with your mum,i know it's hard but everyone needs someone! Their will always be someone on here for you on the forum,i notice you have not posted yet on here,post and introduce yourself. tina.🤗

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I hope you are able to find a job that works for you. I have a very physical job in a warehouse that kicks my butt. Sometimes I feel like I can't do it anymore physically but it is helping me lose weight so I stay. Grandkids are fun, huh? As soon as you get tired you can hand them back to mom. Animals are great for the fact that they don't talk back! I am working on things with my mom...she is a little cold sometimes and it's hard for me to deal with but I'm trying. My name is Melanie btw and I live in America. Thanks for talking with me today it really has made me feel better. 😊

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Goodnight to you in usa mel, anytime you feel down, or want to vent or just want an ear to bend,you know theirs alway's someone here for you. I'm sure we will chat again in the near future. Sending hugs.tina🤗

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Hi, if it’s any help, I had zero problems going through menopause. No hot flashes, nights sweats, etc. So you may not have a hard time. Do they still use Black Cohosh to help? I never needed it but think that was used 25 years ago! Lol. Good luck with all. Katie

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I hope that's the case but my Mom went through a hard time with menopause so I suspect I will too. She had to have an ablation. I once saw a woman experiencing hot flashes while she was waiting in line at the store. Sweat was pouring out of her in an amazing amount. I didn't even know it was possible to sweat that much. She seemed to be in a lot of distress about it too. Although I do have to say I look forward to never having a period again.

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Hi katie, i think you might have misunderstood me in earlier post by a comment i made. I went through the menopause(early) around 4 years ago and i hardly noticed it because i was used to the sweats, et induced, i never realised i was in menopause! Has to be an upside with some of the other symptoms we sometimes have! Atb tina.🤗

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Hi. Another of my too often foggy brain moments. I meant to reply to clubdino. Sry. Atb to you too! Katie

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Hi, Have you tried mouth rinses for your tongue? Store bought or mixes of salt & baking soda in water? Katie

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Hi katie, no, the type of pain in the tongue is a mixture of numbness and burning,only getting to a warm tap will relive it. Atb,tina.🤗

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That’s horrible. Does your doctor know? Some who have bad side effects of meds switch to a different med. Katie

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Oh Tina, that does look painful. I can’t answer your question, but you have my full sympathy. Hope someone else can offer advice.

Mary xx

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Hi mary, it is painful, they also go transparent,totally white, i've had it sometime,it comes on in any weather,even in the middle of summer! Haemo will have to give me medication sooner or later. Like i said mary if only they could walk a mile in our shoes,some haemo's don't understand some of the symptoms we experience. Atb,tina.x 🤗

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Hi mary, did you receive my last reply about being unable to clink onto link you sent me?

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Hi mary, i do have etjak2, sorry thought i mentioned it. I been on the forum over about a year now,diagnosed 11years, always look out for your posts, very sensible advice to people! Atb, tina.x🤗

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Hope you can get a definitive answer Tina. You deserve one! If it’s causing you pain I would imagine it’s more of a circulatory issue than discolouration from the hydrea. But I’m no expert. Push for some answers from your haematology team. I can’t imagine what the sensation in the tongue must be like!

I’m sorry if I gave you the impression that I was not aware that you have ET. I am very aware, and have followed your valued posts, and also know of your previous TIAs. I’m also ET, Jak2+, but thankfully do not have any issues other than the occasional fatigue and bruising. But then again, I’ve bruised easy all my life.

Take Care and keep us updated, as we all learn from each other.

Mary x

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No mary, i realised i did not put it in orginal post. Some people would not have known it was etjak2 i have. Also theirs a problem with my emails, helena303 messaged me but i can only read part of her message to me.i could not click on to your link in the begining and 2 of my replies have disappeared into space! When i did finally did see the link,it was very helpful. Proved what i thought about the hydrea. I also knew it highered our mcv's. I still think hydrea was a godsend for me. I remember how ill i was. I've had many a discussion about this with haemo! I've had tests high imflammatory markers and the like and haemo has even seen it worse than that. Probably because i put up with it and rarely moan about my symptoms that i can tolerate it all the time! Thank god for the forum were we can discuss and understand each others symptoms. Thank you mary for your kind words. Sending hugs, tina.x🤗

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Tina, the first link I put up didn’t copy correctly, so I deleted it. I wonder if that also deleted your response, sorry if it did🤔xx

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Thanks mary! Answered that one! Theirs still a problem, helena 303 replied,can only read part of her reply,me thinks theirs gremlins about! Lol,tina.x🤗

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Hi Mary, I’m hoping you could send me the link. It sounds good. Thanks, Katie

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Katie. You should be able to access it in the post directly underneath.

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ethrombo.blogspot.com/2016/...

I don’t know how reliable this blog is, but you may find it interesting.

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Thank you

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Oh my word. That’s awful. Is your hand blue due to brusing? What dose of hu are you on?

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Hi wyebird,no bruising,discolouratation what flares up,at the moment,hu is 3 a day in week, 4 weekened. Atb,tina.🤗

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Oh gosh. I thought I was on a lot. I’m 2 hu a night 3 fri sat sun. Also 10 anagrelide a week.

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Hi wyebird, was on 5 everyday, 7 days a week at one time! I think i've only seen1 other person on the forum who as taken that much before. Atb, tina.🤗

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Oh goodness, I used to have a total meltdown every time my meds went up. I just couldn’t understand nor still why after three years my platelets were unstable. I kept on being told I was on a low dose. I actually posted to see what the highest dose was. The replies I got were nowhere near yours. I’m not tolerating anagrelide very well so if, in a few days I don’t get favourable results from today’s blood test I will take solace from you if my hydroxi once again gets increased. How did your haemoglobin fare? I’m hovering around 10.5

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Hi wyebird, ironically hb was in range. I have had some recent drops in hb lately and been on the lower dose of hu now for some time now, trying to up it with some changes in diet. Atb,tina.🤗

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Adding chia seeds to your food is an excellent way to add iron to your diet. Unfortunately for me that’s not needed. I have the components but just unable to make the darn stuff.

Check with haemo first before you do anything though in case you have the same problem. Too much iron is very bad.

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Hi wyebird, gp tried to give me iron tablets begining of the year, i refused, problems with stomach with them, i told him i would do it by diet alone,i considered i consumed enough already, red meat, eggs and more green veg than the average person, i am seeing my haemo wednesday and find out if their as been a significant move up in hgb. I have upped my intake in iron rich foods significantly. If hgb still lower than normal its certainly not from me not eating enough iron rich foods! Atb,tina.🤗

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I know EXACTLY how you feel. Good luck

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The third finger on the right hand goes black and numb. The rest are not affected. The cold brings it on and I ought to wear gloves. I think it is called Raynaud's disease in which the blood supply to the extremities becomes compromised in cold temperatures. It goes if I put the effected digit under my arm pit for ten minutes or run warm water over it. It is very common and may have no connection to this drug. I had this year's before I was diagnosed with an MPN.

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Hi pepper, i know all about raynauds, my cns thougt it was that along with me,i've had blood tests to rule out high inflammatory markers because raynauds sometimes go hand in hand with autoimmune conditions like lupus or rheumatoid arthritis,markers were low. Haemo thinks it's the et in general,is advice, wear gloves! What a joke. I was in the house with central heating on! I have attacks in the middle of summer,should i wear gloves? Atb,tina.🤗

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Of course. You should also wear a wooly hat, boots and over coat in 80f. Joking of course. I had it once on holiday in August and had to buy some gloves. It was in Scotland, though where it never gets hot.

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Ha,ha, thank you pepper for that reply, i just could not stop laughing,imagining me walking around my local tesco like that in the middle of an heatwave! 🤣 Atb, tina.🤗

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