Good morning all. I never post but felt perhaps someone could help. My fatigue is so bad that I have to force myself to get out of bed. Then getting through the day is a struggle. I am not on any meds except 1 low dose aspirin. Diagnosed with PV about 7 years. Have phlébotomies about once a month when hemoglobin and hematocrit are high. Wondering if going on meds now is the time to ease the fatigue.
Sending love and prayers to all
In my opinion, going on INF (interferon) could not only help your fatigue, but also possibly revert the PV progression. I wouldn’t hesitate one second to have a go at INF if you don’t have any contradiction for this « natural » molecule, certainly the cleanest drug available for PV.
Thank you so much. Have appointment next Thurs. with Hematologist. I will discuss this.
Have a great weekend.
Hi, definitely speak to haematologist to see what is best for you as I know how draining venesections can be when they are so frequent. Ask about your iron reserves to make sure that is tested too. I was exhausted after venesections a few years back and had to get iron tablets prescribed for two weeks only as I was badly anaemic but we are all different so please ask.
In the meantime sending you E hugs and I do understand how you are feeling. If you need to rest, do so and don’t feel guilty about it. Drink plenty of fluids and eating energy foods like bananas and pasta help me a bit, so worth a try.
Take care, kindest regards Aime xx😻😻
Thanks Amie. I don’t think there is a clear answer for PV. Each person experiences it in different ways. I have two Hematologists and they differ in my treatment. One on Cape Cod in the Summer and one here in FL during the winter. The Cape one prescribed Flintstones with Iron. FL one took me off them immediately as they raised my Hemoglobin and Hematocrit too quickly. UGH! Another no win. Perhaps time for meds other than low dose aspirin. As an RN, I barter with the amount of the phlébotomies. Usually do 300 cc instead of 500. There is also the problem that my husband had a stroke 13 months ago. So I have added that to my plate. One minute at a time for sure.
Be well and thank you again.
Love and hugs to you. Be well!!!
Hi I also have PV and am on Jakafit I take vitamins with iron also. I also bumped up my protein and water.
Thank you so much. Please read my reply to Aime as it explains my iron issues. I feel like I am in a no win situation. I guess balance of iron is key. Perhaps time for meds.
Be well and thank you.
Hugs coming your way. 😊
Hi. For almost all of 2017 and 2018, I was either in bed or lying on the couch. The fatigue was overwhelming. In Nov. ‘18, I started HU. By Feb., I still need about 10-12 hours of sleep, but the rest of the time, I have pretty decent energy. I haven’t needed a phlebotomy for a year so far (I was having them frequently). I am grateful for the change. I hope your doctors will soon find the right fit for you. May God bless you with improvement.
Thank you so much for sharing. I shall see what Hematologist says on Thurs. re me starting meds. I will let you know.
Have a great day. 😊
I've had PV for 11 years and some days I sleep all day. I had my clinic last week and bloods were good, but I felt so tired. Been feeling fatigued for a few weeks. I don't think the weather and dark nights help!!. I'm on low dose aspirin and venesection when required. Had 2 lots if 2 at two week intervals this year and a course of iron tablets. It's a fine line of getting iron, red cell numbers all in balance. Still keep smiling, always someone worse off than me.
Thank you for your reply. Wish I could take Iron. The fatigue is overwhelming. Seeing Hematologist on Thurs. fingers crossed he comes up with something to help.
Have a great day. 😊
I only take iron on haematoligist say so and then very low dose for 2 weeks. Haematoligist says if anyone else suggests iron absolute no, no. Fatigue is the worst part of this problem. It usually last a day or so but had it over a week now. Have a good day 🤞🤞
Thank you. My severe fatigue is into second week.
Hopefully something will work. Should know more on Thurs.
Have a great day. 😊
Sorry to hear of your struggle. I am on Peg IFN for over a year now. It has definitely brought my counts down, however they are currently rising (?) so my Hematologist is increasing my dose. I do have quite a bit of fatigue even whilst on it however. (A common side effect of Peg is insomnia.) I know this sounds crazy if you are having trouble even rising out of bed, but I do encourage you to think about some form of exercise. I find that when I drag myself out to just walk a bit, it does give me more energy. 😬 I understand it may not be a option for you. Please let us know what your doctor advises.
p.s. Where in Florida are you?
Thank you. I am in Vero Beach. PV is certainly a struggle of balancing things. I will post after Thurs. Dr. visit.
Have a great day. 😊
I was diagnosed just a few months ago and also am struggling with fatigue, some days really bad, some days not so bad. I do find, as Miriam says, that exercise helps. The other day I was so wiped out, I wanted to cry. When I stood up, I ended up putting my head down on the kitchen counter. I had to push myself really hard to go out for a walk in the cold (we live in New York). I ended up walking for an hour in the cold and feeling better for a few hours when I came in. It does help. It's just that when you're wiped out, it's hard to get started.
Also, my hematologist put me on hydroxyurea instead of phlebotomies because she felt the side effects would be less. Maybe that would be true for you too?
Hoping some of everyone's suggestions help a little. It seems that it's something we can manage at best, not get rid of.
Thanks so much. I will try more exercise no matter how hard it will be. That and more fluids.
I will reply as to my Hematologist visit on Thursday.
Be well. 💖
Someone on this list suggested that when you can't push yourself to get out, it helps even to stretch, to do yoga. I find that it's taking the first steps that are the hardest. Stretching can be a good first step when the fatigue makes you feel like gravity is just pulling you down.
But if I can get myself out the door to walk, it's the most helpful.
Hoping you can some help on Thursday!
Thank you. Today is Thursday. 🤞
I can feel your pain my brother! I was having venesections every three weeks for about 5 months. When the doc finally checked my iron levels, I was so anemic that they could not even measure my ferritin levels. The only sign I had of this was that my energy levels were falling noticeably. I went on iron supplement for a few weeks prior to a major surgery to try to get my levels up a bit, but it made me so constipated that I discontinued it after the surgery. I would rather deal with the low energy that the other option.
The things I have found that help are:
1. Morning cup of coffee (but limit caffeine to 1x/day).
2. Light exercise even if a bit tired.
3. Practicing Qigong (Tai Chi is one form of this).
4. American Ginseng tea (Not the Korean/Asian Ginseng which can increase BP/HR).
5. Eat an iron rich diet (but avoid too much seafood due to mercury levels).
6. I am trying Desiccated Liver Supplement - not sure if it helps, but at least it does not hurt.
Others have noticed that we each respond differently to out MPN and to the treatment options. Some of the chemotherapies also have asthenia and dyspnea as adverse effects, so they have the potential to compound the fatigue issue. I turned out to be hydroxyurea-intolerant, so I am with Manouche in thinking that peg-INF would be a better choice if chemo is indicated. All of the chemotherapies come with both risks and potential benefits that you have to carefully evaluate.
Hope you get some solutions ASAP.
Thank you so much for your advice. I am a PV sister. My whole life my name was interpreted as male. 😊I will surely take your advice seriously and discuss with Hematologist on Thursday. The fatigue is killing me as I am also caring for my husband who had a stroke 13 months ago.
Have a great day. 😊
Not even sure why I intepreted the name as male. Regardless, hope you find some solutions ASAP. I have found it is worth pursuing some complementary health approaches. Traditional Western medicine offers many marvelous benefors, but does not have all the answers. Turmeric-Curcumin supplements have had more benefit than ny NSAID I ever took for inflammation. The Qigong is helping in many ways, though Western Medicine has little understanding of why this is so. There is a lot of nonsense out there in the alternative healing world but also some really effective techniques.
All the best my MPN sister.
Thank you my MPN brother. 😊. I shall share Hematologist visit results.
Be well.
Not sure I have the answer but, with monthly phlebotomies your iron level is probably non-existent. That will lead to fatigue. I'm on a low does of hydroxy 500mg daily and aspirin and get a phlebomoty about every 16 weeks or 4-months. If you do anything, I mean anything to raise your iron level you'll need even more phlebotomies. On my schedule my iron level is right at the anemic level but I can function relatively well. Good Luck to you! PS I also take 5,000 mg of vitamin D a day.
Thank you so much. Perhaps it is time to start meds. Hopefully we can figure something out. 🤞
Be well and have a great day. 😊
I was diagnosed with PMF a little over 2 years ago. At first I was referred to a Hematologist who specialized in something other than MPN. Through a very fortuitous meeting via a Facebook Group, I was able to become a patient of an MPN minded Hematologist. Through her prescriptions we have relieved a lot of the original fatigue. Our GP suggested a sleep study at the University and I was prescribed a CPAP. This has made a marvellous difference as well.
You are fortunate to have found the right Dr.
Where are you located? I may search for one.
All the best. 😊
We live in Pender Harbour BC CA and have to travel to Vancouver to see the Specialist. We only do this about every 6 months. She does, however monitor my bimonthly blood tests and changes my dosages accordingly , with a phone call. We were fortunate to find Mark Williams, a very active member of the board of MPN Canada. Good luck with your search for the correct specialist for your disorder.
Thank you so much. I shall continue my search. So happy for you.
Be well and have a great day. 😊
I take a good natural source of CoQ10 60mg daily. 120mg is also possible. I feel great with that. It really helps the mitochondria (the batteries of all cells that we have in our bodies). As we get older, they get weaker. CoQ10 activates then. Also check if your adrenals are down. Ie. Low testosterone (for men and women-women need Testosterone too!) or low DHEA, which is a precursor to Testosterone. Since I got the DHEA up two months ago, I feel 15 years younger. My adrenals were shot and no one cared. My new orthomolecular doctor caught that. The other tips above are also super.
How did things go today?
Total waste of time. Appt. was to be 20 minutes. Dr. late seeing me so he only spent 5 minutes with me. I told him of my fatigue. Said I should check my thyroid. Three weeks ago I had extensive blood work. Thyroid normal. My internist send records to Hematologist. He could have checked my results right then on his computer. Did finger stick prior to seeing him. Hgb and HCT high so I stayed for yet another phlebotomy. Had one two weeks ago. Never had them this close. Not sure if his Blood calculator is off. Calling my internist this morn. Scared and angry and no fatigue answer.
Thank you so much for checking in me. ❤️
This answer may be controversial. But have you thought about trying some of the ADD meds like Adderall. I've been dealing with this ET since my 20s and found my complaints of fatigue were never taken very seriously since it is such a common complaint. I got on Adderall for my ADD and it helped my fatigue so much. I'm part of another messageboard for MPNs and one of the members is a neurologist who often suggests Adderall for the many people who complain of fatigue.
As a nurse, I'm sure you are aware that it is an amphetamine. But amphetamines are not the demon that people make them out to be if you take them responsibly. Just maybe something to keep in the back of your mind if your extreme fatigue continues long term.
Thank you so much. I definitely research this. Keep doing well. 😊
Studies show that Adderall and ADD meds are damaging to the nervous system and to the gut. I’ve had experience with them and had many side effects. My daughter had massive stabbing in her head. She laid paralyzed on the kitchen floor. They are nothing to play with.
They work fine for many people. That's just your experience.
Hi Clubdini,
I’m a teacher on an international level. I’ve observed what these drugs are doing to many students. Once they start, most have to keep increasing the dosage.
Unfortunately, ADHD drugs are being prescribed much too quickly and the Pharma industry is starting to use them like a fix all. I remain weary of these. I always try to find harmless and natural alternatives first.
Wishing you all the best.
Anag
PV, diagnosed in May2017, Aspirin, phlebotomies 2-3 times per year.
To remain functional and alleviate brain fog and severe fatigue I take the following:1) NAC (2 x 4g per day) combined with 2 x 2g glycine to increase glutathione levels.
2) 1-2 x 500mg Niacin. Use slow release tablets to prevent or minimize flushing
3) Niagen (nicotinamide riboside) 2 x 150mg mg per day, sometimes more.
This regimen has been a game changer for me. It keeps me functional, relieves bone pain, and pain in the spleen area.
Importantly, please speak to your doctor before starting any of these supplements. That said most doctors are not well educated about these substances in the context of MPN.
Note, NAC can change the coagulation behavior of your blood.
Good Luck!
Not sure where you’re located, but currently for PV patients there is an interesting trial. Google PTG-300. It’s an once a week injectable that regulates the iron in the body and for most (so far) it has eliminated phlebotomy. This drug does two things: 1) maintains HCT at a safe level and 2) eliminates phlebotomy and allows iron levels to return to normal levels which usually equates with the patient feeling much better. I believe this is currently in a phase-2 trial and looks very promising for PV patients. Good luck to you!
Nothing like a shower in the morning to get rid of the brain bugs and bed bugs!👍👍
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