Good day all. I never post but do read all posts daily and send prayers. I was diagnosed with Jak2 PV several years ago. So far managing it with phlébotomies about every 6 weeks. No medication except low dose aspirin. My iron level is extremely low leaving me totally exhausted. I will need another phlebotomy next Thursday and dreading it due to low iron.
I have been ill with a severe sore throat, so sore that I had to dig my nails into my palms so that I could swallow. Terrible cough and only sleeping 2 hours a night due to throat. Was put on three weeks of antibiotics. Sore throat is better but still persists. I have never been this ill for so long, coming up on four weeks.
Trying so hard to force myself out of bed to gain some strength back. Feeling very depressed as each night I think the next day will be better and it’s not.
I guess my question is, has anyone else caught something and had it last so long? Apparently I must have a virus as the antibiotics have not worked. Dr. told me to just wait it out. So sorry to be a downer. Just looking for some hope.
Sending love and hugs to all.
Harlie
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Kinsalelady
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Hi Harley, Sorry to hear you are so down and depressed....it does seem to go with our maladie. like you I have had throat,sinus and chest problems since last November......on and on not getting any better leaving me weary and depressed.Had blood tests and X Ray's ...all normal ! My Drs here tell me I must accept my P V and its effects,adjust life accordingly.,as all tests are normal.I am on anti depressants now,fairly mild,seem to be helping.Chin Up,not easy I know,but you will come out of it soon.....Keep smiling ,an old friend used to say to me......hard when you feel like burying your head, You are not alone ,there will be more replies from folks feeling the same!Best to you,Sally xxx
Oh, Sally. Thank you so much for your support. I will keep my chin up and think of you when I do. Nothing worse then feeling down and alone. You all change that feeling.
Yes, I had the same thing - visited UK to see my family there and got the flu. I was awfully sick for 2 months with it - it is very depressing while you have it, and for a bit of time after it goes. It will pass, but please take good care of yourself. It's no fun having that plus the PV - that is what I have. Prayers coming for you - M
Thank you for your encouraging words. Also thank you for your prayers.
Dr. claims that I didn’ Have the flu but no real diagnosis. Sore throat will not go away. I just hope it will pass. My husband has been taking incrediycare of me but I feel like such a burden. As an RN I am used to caring and not being taken care of. Also I am not a patient patient.
So sorry you’ve been feeling so poorly. It sounds really awful. First, let me say that you can expect to feel better - you will but it may take a little more time.
When I was first diagnosed PV in 2009 or so I had frequent phlebotomies initially and at my annual checkup my internist expressed concern that my hemoglobin was at 10 ( I hope I’m recalling these numbers correctly). He asked me if I was tired - well, I hadn't noticed since I was always tired. I was getting up at 5:30 everyday and never getting more than 5 hours sleep. Also, I was not drinking enough water because I didn’t have bathroom breaks at work - please forgive my indelicacy but hydration is extremely important for us. Eventually the phlebotomies were reduced.
In November 2014 I had an allergy attack at work. I had coughing attacks everyday and night and was taking all kinds of asthma meds and then prednisone. I didn’t get better . Eventually I was diagnosed with pneumonia but because I had few sick days I was dragging myself into work almost everyday . I remember sitting down in the street a few times because I could barely breathe and couldn’t walk. It was a scary time and it took months to recover.
I’m sorry I’ve gone on and on but I want you to know why I think I understand how you feel.
As a nurse you know a lot more than I do but for what it’s worth ( and only a doctor can tell you if this is true for you) frequent Phlebotomies will sap your energy. And, sometimes if you get a bug it can take a long time to recover. If you have both frequent phlebotomies and an infection that lingers it’s especially hard to feel better. In addition to more water and as much rest as you can manage with that cough, perhaps you could ask your hem if you could space out the phlebotomies a bit.
Please be patient with yourself and let your husband baby you- it’s good for both of you.
You will feel better Harlie . Now is the time to indulge yourself - whatever it is that puts a smile on your face - do it.
Thank you so much for your understanding. So sorry to hear that you have been through this. You have given me hope that this will eventually go away. As I have said before I am not a patient patient but learning to be.
I think a big dish of ice cream is on the list for this evening. 😊
I’m really sorry you’re feeling poorly. I hope you feel better soon, I really do. I think we’ve communicated in the past - all you folks are so helpful and kind at this website- thank you.
I’m in New York City - Brooklyn to be precise. My current hem is at Memorial Sloan Kettering Cancer Center.
Your text was cut off after “ET - calr. ..”. I’m terrible with technology so I couldn’t figure out if there was more . I don’t know what Calr means exactly but am definitely familiar with ET. I have PV.
If hemoglobin levels are calculated the same in the UK as they are in the US then my internist/cardiologist would not be surprised that you’re feeling badly and he might question the frequency of your phlebotamies.
When I was in your boat: with low hemoglobin/ frequent blood- letting and told my hem about my internist’s concerns she set future phlebotomy procedures to be forbidden if hemoglobin levels fell under 12 or 13. At the time I was being phlebotomize every other month. That and aspirin were my only treatment. The hem’s goal was to keep hematocrit within “normal” levels.
I have a different hem now - I take HU and aspirin and hadn’t had a phlebotomy in over a year and a half until 4 months ago because my HCT was elevated. I noticed it on the CBC report and asked to be phlebotamized. Hem agreed. Then I had another phleb on Monday. My HMG is now 14.3 down from 14.7 two months ago. HCT is 46.2 down from 46.9. I feel fine . Knock wood.
Can you ask your doctors to explain your fatigue and whether it’s attributable to the frequency of your venisections? If so,can they make an adjustment? Be persistent . Arm yourself with information.
Are there dietary adjustments you could make?
Can you consult with a nutritionist? My hem says there’s no empirical evidence that diet makes any difference and yet they have a whole department dedicated to nutritional issues so it can hurt, either.
Our medical system is different from yours . I have a sense it’s better coordinated in the UK and generally more available but I think the lack of coordination here helped me because I had an internist/ cardiologist wholly unconnected to my hem and he was was looking at my bloodwork from a different perspective than hems who are almost solely focused on the blood and who -I feel -can sometimes be dismissive of quality of life issues like itchiness, fatigue, and general malaise, etc.
This is just my experience, we are all different in how the disease affects us. You need more information Wyebird and you need your concerns to be thoroughly evaluated. You need to be heard.
I am clearly no expert so I would recommend that you try to get a second or third professional opinion if possible. Perhaps see a cardiologist/ Intetnist. Also, can you contact MPN-NET in the US? It is a site similar to this one. The people are very helpful and kind; most of them are coping with an MPN and the “List Owners” ( and a great hem: Dr Susan Le Clair who also writes to the site) are extremely knowledgeable.
My very best wishes to you. Please let me know if I’ve answered your questions or can be of any help. Lu
I'm so sorry you feel so low, I just wanted to tell you that I am in a similar boat at the moment, I posted on here last week about feeling so exhausted and low, bad body aches etc and soo tired. I had an unscheduled blood check as I felt so bad, and was told iron is low.
But... I have also had a vile bug on and off since the middle of January, terrible sore throats like swallowing shards of glass, and what feels like a chest infection, every time I think it's gone, it seems to return a few days to a week later, the only reason I haven't worried is that my mum, my daughter and her boyfriend have all had exactly the same illness.
I'm not a doctor so wouldn't ever tell you that it's all fine, but I can relate to your concerns.
I truly hope that with a bit of a change in the weather, you start to feel better, it's awful feeling so low and I wish you well very soon.
Rest and be kind to yourself till this passes. X
Also I don't know if you remember we chatted once before as my daughters name is Harlie, and you are the only other one I've heard of.
Oh my gosh. I totally forgot about your dayghter’s name. So very special. I have found that life surely gets in the way causing me to forget the good things and concentrate on the worrisome things. So sorry.
Thank you so much for your support. This past 4 weeks has been the toughest journey so far. I have no clue how to balance very low iron and high RBC. I guess we all go through this. I am really hoping that I do not have to start drugs.
Thank you again. Please give Harlie a giant hug from Harlie. 🙏❤️
I often feel an M P N is a 'lonely' disease. Neither my excellent G Ps or Consultant have other patients with P V or the other two.By and Large we look well and friends do not understand how fatigued we can be or how depressed.I see my friends going off on far away holidays ,having late nights here and there....there is no way just now that I can work at my sculpture,see to my mares,just manage short walks with the dogs then breathless!!! Hope we all get our energy back soon( need Aladdin and his lamp)!!!!Best Wishes all !keep going. Sally
Thank you so much for your kind words. So sorry about your fatigue. I know how much your sculptures mean to you along with your mares. There is so much that we want to do and can’t. That is the depressing part.
I know what you mean about friends not understanding. I suffer from heat intolerance and was once told “to suck it up” and “grow up”. Yes, these are friends. It hurt. I guess we just look normal.
Hi Harlie, sorry to hear you are so under the weather. Sending you E Hugs and positive vibes so you feel better soon. I ended up with a nasty virus, cough, cold, yuk post holiday and have really upped my vit c intake. It’s probably a coincidence but I seem to have beaten it after about 6 days.
I’m the same, low iron due to venesections and for me I’m definitely tired because of that and when I’m tired I pick up bugs. I’ve also been drinking more fluids (and peeing) a lot! Don’t know if the excess fluids have helped also. The only thing I have been left with are joint pains which could be my osteoarthritis flaring.
Hope you feel better very soon. I’ve just had my clementines (plus ice cream for a treat)! Kindest regards Aime xx😺😺
Definitely trying to drink more. It is so difficult for us as we cannot take iron supplements due to increasing our RBC. Is there anything you take to help with the deficient iron?
Hi Harlie, no unfortunately there is nothing I know of I can take for the low iron but find some energy from pasta, bread, fruit and nuts. I eat as good a diet as I can with some red meat, plenty veg, fruit and salad but unfortunately I have a sweet tooth. 😹😹 chocolate is my downfall but it makes me feel better.
Yummmm chocolate. I agree. That and a nice dish of ice cream. I am checking with my Hem about Spirulina as it is very high in iron but a different kind from meat. When I find out I will post about it.
maybe try a throat spray - u can get them with a bit of anaesthetic in, over the counter - i use these with a sore throat as it helps me to sleep and swallow
You are definitely not alone in this. My wife and I both came down with the flu in January and were laid up for over 3 weeks. Since then we have had a never ending series of bugs / illnesses, mostly focussing on painful throat, congestion / sinusitis, and total lack of energy (sound familiar?). I have ET JAK2 but my wife is normally healthy. She went to see the GP who gave her antibiotics for congestion, which cleared up the really nasty mucus, but she still has congestion and lack of energy, as do I.
So overall, I have concluded that it's nothing to do with MPNs but probably a combination of age (both late 60s) and the remnants of flu. It's not much fun is it? Let's hope we all pick up soon.
Thank you for your kind words. So sorry to hear that you are going through the same illness. I have never been this sick. Four weeks ago today it started.
When my husband had a sore throat and mouth sores, he gargled with warm salt water 3 times a day.....and it really helped with both things...and hydration is stressed....and there is nothing that good chocolate can't cure....hang in there!!
Yes, right. I have spent my adult life as an RN giving care. It is difficult for me to receive it. Not sure why I feel this way. Something to think about.
Hi kinsaledady, only just seen this as I’ve been low too. I quite like the idea of someone else feeling exactly the same as me. I thought I was the only one.
Regarding you sore throat by now hopefully you are on the mend. I went through a similar but milder situation Christmas time. All low key, sore throat, earache, cold, sore throat. No sooner did I bounce back then I had a minor op which crashed me again. Normally people would be back on their feet after a few days mine is 4 weeks. Later today I have to have the op repeated. So since Christmas only about 6 weeks has been worth living. Regarding your iron level what did they dip to before you had a blood transfusion. My HB is 10.3. I take 17 tablets a week ( hydro)
So sorry for what you are going through. I am at 5 weeks of being ill. Off to see Hem today. HGB near 16 so I know phlebotomy is due. UGH. Iron very low and throat still sore. Not sure how much longer I can hang on. Still no diagnosis re sore throat. Iron level at 22. No energy at all. Sorry to be a downer. Wishing you a speedy recovery also.
Go ahead and be a downer. I can’t believe I find it so comforting. Especially when all info tells you MPN suffered lead GOOD QUALITY OF LIFE. I’ve said this to friends so now they have the wrong idea of how and why I feel rubbish most of time .
Just read this - it might give you comfort to know the last 12 months has seen the biggest flu epidemic for years. I am from Australia and it was our worst on record and I understand it was similar around the world. I knew several people who took up to a month off work. Highly unusual. I wouldn't read too much into it.
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