Hi everyone, hoping you are all keeping well.
For the past week, I have been feeling really lethargic, short of breath when out for walk, last two days continuous headache...head is a mush!!! Nighttime usual sweats, and this is where my headache really comes on ( eases during the day) are these just normal symptoms of my PV Jak2+
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Hey Yvette... 
These symptoms are all symptoms that one might experience at various stages throughout the course of one's MPN journey etc...
Sometimes, medications and dosages might need titrating in order to settle things down...
What has your MPN specialist had to say about all of this? If, you are waiting to see them...
Try writing out a list of questions to help you address all of your concerns...
BTW... How's your diet? Sometimes, what we are consuming can also impact upon us...
I find trying to stay w/ a consistent level of exercise really helps me, do you do much yourself?
Anyways, raise all your questions w/ your GP & MPN specialist, when next you can...
Stay safe & well Yvette...
Steve
Thanks Steve for reply, I will makes a note of everything and next time I have haematology meet up will mention it all. We do try to do a good walk around the village every day. .....thanks again
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Hi there. Sounds like it would be worth a call to your haem team to check it out especially if these are new symptoms. It may be that you need meds tweaking or a venesection or bloods review. In any event you’d definitely benefit from some professional advice and reassurance. Meanwhile make you keep super hydrated especially if temperatures start to climb. Wishing you well.
Thanks Ebot, been on interferon for two months now, and been feeling ok....but just this last few days been feeling lousy....although today, headache has gone 😁
Glad you’re headache free today. I think ups and downs are normal. Heat, hydration, stress (stress, what stress? 🤣) can all impact day to day. See how you go. No harm in calling your CNS if you have one. Maybe your iron levels are a bit low.
I definitely feel more fatigued on interferon (Pegasys) than I did on previous medication. I've been on it now since last July and, while I still lack some energy, my night sweats have now gone away, as have other side effects.
I went to my GP to have my bloods taken, ready for my telephone Haemotology appointment. The next day I had a bag of iron tablets delivered. I telephoned my GP but could not get past the receptionist. I told her I had PV and was taking Hydroxycarbomide and asked what my Iron readings were as I shouldn’t be taking iron. I was just told to contact my consultant.
It did make sense because I had been quite breathless lately and very tired.
I couldn’t get passed the consultants secretary over but she did phone back to check how much iron I was prescribed. I did think it was a large dose (200mg x 3 daily). She sold me that she had asked “A” doctor who gave the vague response of “If the doctor has prescribed 2 then take 1 but at the most take 2”?????? I asked her for how long and I was told “Well you are being called on June 2nd so you should taken them until then”. I just couldn’t get an answer. I couldn’t even get the answer of what my iron readings were!
Anyway, what I am trying to say after all that is maybe your iron is low? It would account for how you are feeling right now
I've always been told by my haematoligist that if anyone wants to give me iron other than her it's a big no. A few years ago between haematology appointments i was feeling tired and my GP did a blood test and said my iron was low and she thought I was bleeding internally and said I should have iron tablets and cameras. But she said she'd speak to haematoligist. Haematoligist said yes iron is low and then did a venesection to reduce red blood cells. My haematoligist said if I'd had the normal 6 week course of iron tablets I would have had a heart attack or stroke. I only take iron if haematoligist prescribes them and then usually I day for 2 weeks with a follow up blood test.
I totally agree with mark382 and his hematologist. Why the bloody heck would you take such a large dose of iron without even knowing why?!! The MPN specialist I just talked to said if I really got anemic, to perhaps take a low dose (25 - 45mg) every other day. Taking such a large dose of iron will likely require a dose of some form of laxative. Hope they advised you about that as well.
But bloody heck Jilly! Time for tap shoes (or clogs) as someone needs to have their head tap danced on. What do you mean you can't get a straight answer from the consultant office about the prescribed iron? What do you mean you can't be told what your iron levels are? Your labs are in your records. Anyone with access to your records can look it up. Who prescribed the iron and why? Why was this not explained to you directly by the prescriber? Did the prescriber discuss the fact that known side effects of hydroxyurea include dyspnea (short breath), asthenia (fatigue) and anemia? Any discussion of potential for a HU dose adjustment? What does your regular hematologist have to say about this?
No one should ever tolerate such shabby treatment from a medical care provider. You have a right to your lab results whenever they are in your record. You have a right to speak directly to the prescriber anytime there has been a change in your treatment/medications. You have a right to get answers to your legitimate and reasonable questions.
I have no idea if you really need the iron or what the right dose would be if you do need it. I would definitely not take it without direct input from the hematologist managing your treatment for ET.
Sounds like it is once again time to saddle up and sally forth in the quest for proper medical care. Suggest using your largest lance on this medical practice. Hopefully the quest will be successful rather than Quixotic. In all seriousness, do advocate for yourself. You deserve to be treated better than this.
Don't worry my friend, I have not taken one tablet. They were delivered late Thursday so to late for a call back. I will be phoning the practice first thing tomorrow to get my blood results. I said to the receptionist that if my red blood cell count goes to high I could have a stroke or heart attack but just the same old flannel "I am not clinically qualified to comment you will have to phone GP on Tuesday or speak to your consultant. Anybody need 136 iron tablets?
NOT ME!!
Glad to hear you are following up appropriately. I learned a good bit about this from my own issues with PV treatment. It is a complex balancing act. For my PV treatment, they want me to be iron deficient, but not significantly anemic. The distinction is in the erythrocyte levels, using HCT as the gauge. As long as HCT is not too low, the docs flat out don't worry about the iron levels.
Stay well Jilly.
Ooh, thanks Jill....it is a fight trying to get past the Drs receptionist sometimes, I had a battle last month for my blood test...got there in the end by talking to another receptionist the next day.
Hmm not sure about my iron, but will up a bit of steak perhaps 😁
I've been lethargic and body feeling heavy. Breathing not quite as flexible as usual, but my peak flow is ok ,(I also have asthma so check my peak flow). Having quite a few visual migraines, but with minimum headaches. I sometimes have to read things twice to understand it as concentration level is slow.
I always feel warm at night, even sleep part way out of the duvet even in the winter.
Should have my haematology clinic this week, but told to get bloods done last week. Assume I'll get a call. I think I need a venesection as I can usually tell. In fact my haematoligist said to her colleague I know when I need one - I tell them. My hct was one point off needing a venesection at my last blood test following 2 weeks of iron tablets. Strange to say but I'm looking forward to a venesection, which is strange as I hate needles even though I've been going every 3 months for nearly 12 years. Feel so much lighter and more energy after a venesection.
Hi Mark....me too, I am having to re read, to take it in 😏
Hope you get your venesection soon and feel a lot better. If I am not feeling any better by weds, will ask to speak to my Dr, and give haematologist a call...
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Thank you. Hopefully I get a call on Wednesday as that's when my appointment is. I'd give your haematoligist a call, if they're like mine they should see you or call. If I call mine she will always see me (normal times). Apologies if I have to wait a few days. Hope you get sorted soon. Keep safe.
I am a little perplexed that you are taking iron pills, which would usually be contraindicated if you are having venesections for PV. The only time we would take iron pills is if we got over-venesected (or over-medicated) to the point that we were symptomatically anemic (happened to me). A certain level of iron deficiency is the point of the venesections as this is what helps control erythrocytosis. I just went over all of this with the MPN specialist who very helpfully explained the difference between iron deficiency and anemia. The short version is that there is a band of ideal HCT. The Goldilocks HCT is somewhere between 40%-45%. The exact bottom number is perhaps not as important as whether you are symptomatic for anemia. My doc told me iron pills = more venesections. Don't take them unless your HCT gets way too low or you are symptomatic for anemia.
There are other philosophies regarding PV treatment than what my docs recommend. Perhaps having the doc explain to you why you were advised to take iron pills when it will drive up erythrocytosis and why that is part of your treatment protocol. If you are only one point away from needing venesection and can actually feel the difference, would think that iron pills would be something to review with the doc. If you learn something, please post it. We all benefit from learning different perspectives regarding our treatment for PV.
Actually do not think it is odd that you are looking forward to the venesection. I don't like doing them either, but I sure like the results. I am on a venesection-only treatment protocol. It has worked really well and does a great job controlling the erythrocytosis. We will be working to monitor things a bit more closely so we don't overshoot the mark again, but I am really pleased with how the treatment is working. Like you, I can tell the difference when my HCT stays below 45%. My blood pressure drops below Stage 1 hypertension - which is great!
All the best to you. Wishing you that lighter feeling and more energy.
Thanks for your reply. I think I may not have explained it very well, but taking iron tablets isn't part of my general programme. I Ionly have them prescribed by my haematoligist if my iron level is low and I'm symptomatic. I've only had the need for iron tablets on 3 occasions in nearly 12 years. My last appointment my level was 42%, but I was symptomatic and my red blood cells were small. If I wasn't symptomatic they wouldn't have done anything. My level went from 42% to 44% by taking one low dose ron tablet for 2 weeks. I have had a venesection at 44% before now. I was feeling a bit tired but we were in the thick of the coronavirus and wanted to avoid the hospital so I didn't push it. My ideal level is 43%. Here's hoping for a venesection. Must admit a bit concerned about having to go to hospital, but the sister on the unit that does the venesection runs a tight ship so shouldn't be any danger there - famous last words!!. Getting through the hospital may be the issue, but I believe it's like the Marie Celeste at the moment. Keep safe.
Glad to hear the hemo-doc is driving that iron ship. It can be a balancing act and we are each different in how we respond. Good that you have the inside track on the phlebotomy clinic. That is a relief. I am coming up on my next venesection in a year. They really overshot the mark. I was not symptomatic even when anemic so I opted out of iron pills. Hate the side effects.
Good luck to you on your next venesection. Hope all goes well.
Thanks 👍Fortunately never had side effects being on iron.
Lucky you! For me, iron pills = YUCK! 🤢
Me too 😣
On my. This is weird. So have I! Felt so good earlier and the last two days I’m dead on my feet. Too tired to even fix something to eat. If not for my little gremlins I’d probably stay in bed but, bless their hearts, doggies don’t understand and want their food! Hope it goes away soon. Our weather has finally warmed up and I want to do some yard work. Keep in touch on how you’re feeling.
Ooh, you too 😏 as you say thank goodness for your little gremlins 🤣 will keep in touch, I will call my haematologist on weds. 💞
Hi, Yvette, I have post ET MF and I also have been feeling very lethargic and short of breath for the last 2 weeks. I made an appointment with my hematologist Friday and and my numbers were still pretty stable, so she told me to call my gp and maybe get some other tests. She also said something interesting that I didn’t understand. She said that even though on paper, my numbers are improved, it doesn’t mean that my fibrosis isn’t getting worse. I sent her an email to ask her what she meant, but I haven’t heard back.
I hope you feel better soon.
Cindy
Hi Cindy...oh interesting..I am getting puffed just getting up and going to the loo ☹️ I think that’s where I will be going to too if I can get appointment with my Dr...
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Had 3 monthly clinic yesterday over the phone and blood results were as I expected. Need venesection, in fact need 2 with 3 weeks between them. Asked doc what precautions were in place regarding Covid 19. He said less patients in at a time and adhering to social distancing. I'm a bit apprehensive about them using a 2m needle and hope they have good eye sight.🤣🤣🤣
So, had a blood test, and haematologist called to say all bloods are good....so now rather than start a whole new lot of tests, I am trying to increase my exercise and lose some weight, as I am thinking since lockdown, not been as active....back to sensible eating again... 😁
just been diagnosed E>T
what is it, really?
Persistent symptoms even when HCT is OK?
