New to this, but have been dx with PV for about 3 yrs now. I take HU and low dose aspirin. My labs have been great amd stable. Uet I'm still suffering from a lot of side effects. Wondering if this is normal for others as well, or if I may have some other medical issues going on too. I have had some positive test linked to possible autoimmune disorders, so trying to figure this all out. As my hematologist and primary havent come up with any answers. I suffer with extreme fatigue that's making my life challenging, as I'm 33 with 2 children and a husband working 2 jobs. I work part time but struggle to give my family the energy and time they need, especially after work days. I can easily sleep for 12 hours straight. I often sleep a good 9 hours, take my kids to school, and return to sleep til pick up time. I'm so drained all the time, I hate feeling this way. Anyone relate to this level of fatigue?
Extreme fatigue: New to this, but have been dx... - MPN Voice
Extreme fatigue
Extreme fatigue is common with PV. Have you thought or spoken to your haematologist about the possibility of switching to pegasys (peg interferon). From my experience this helped lift some of my fatigue.
Have you read about exercise helping fatigue. This is an old video (2014) of Dr Mesa’s speaking about improving fatigue. I’ll try and find a more recent one.
patientpower.info/myeloprol...
Thank you for responding and your input. I used to be extremely active, love playing sports, and working out. It was my stress reliever. I was at the gym 3 to 4 days a week regularly and had to stop because my fatigue levels only got worse with the activity as well as my joint pain. I keep hearing exercise is helpful, maybe I'm over doing it? I'll watch some of the videos sent. Thank you again
When I started exercising I found it helpful to not remind myself of my ‘old’ life and move forward slowly improving my new life.
Yes that was a hard thing to accept. I have come to accept it now, just dont k ow how to start fresh with what's needed to improve my quality. After reading a lot last night. I think your right and just need to take baby steps. Going to start with 10 mins. Really hoping it gives me some fatigue relief. I hate that I can literally sleep all day long. I know it's frustrating and hard for my family as well. Thanks for helping me regain some hope!
That sounds like a good way to start. Remember not to expect instant improvement. Try to assess your fatigue after a month.
H
I too have had normal looking blood counts and bad fatigue at the same time. In fact, it was persistently feeling more tired than seemed right for my age and activity level that lead to my diagnosis of MF.
Which makes me think that there is something. ( maybe cytokine levels ?) that isn’t measured in current blood tests that is abnormal in MPNs , and would reflect fatigue.
Even when my haemoglobin is in the normal range - 12.3 last time, thanks to monthly EPO which keeps it stable - I still feel too tired and get ratty easily.
A unit of blood, on the other hand, brought me back to my old self. But that’s only a short term fix.
Do let us know how you get on - fatigue is very much associate with MPNs.
I started with elevated RBC and platelets. Which lead to checking my jak2. I have PV but being on HU and having good counts for a long period of time with my meds, I was hoping to see improvements in my symptoms, particularly my fatigue.
Rachel, how long have you been on EPO? How did your doctor decide you needed it? Thank you
I was prescribed EPO soon after starting taking ruxolitinib (Jakavi) because that made me anaemic. I don’t know what the basis for my being offered EPO was, but I’d read that it could help, so when it was suggested , I took it. I started with EP0, which needed weekly injections, and when I switched hospitals and haematologists I changed to darbapoetin , a longer acting form, instead. I inject monthly.
As for exercise, my suggestion would be to try allowing more recovery time as well as starting with small amounts of exercise - so maybe only alternate days. I recall a Scientific American article 5 years ago or so which made this point in relation to older people exercising.
Rachel
hi 406_living, sorry to hear you are suffering with fatigue, it is really horrible, we have some very good hints and tips on how to cope with the fatigue on our website
mpnvoice.org.uk/living-with...
and you can also read and download our Fighting Fatigue in MPN information leaflet
mpnvoice.org.uk/documents/t...
which might help. Best wishes, Maz
Thank you for the links, I appreciate it lots!
HU can also make you fatigued...I have similar fatique rating as you, but I'm 65.
Feel better, my heart goes out to you.
Uzza
Sorry to her you got hit by the fatigue bug. The medical term for this is "asthenia" - you will find it listed in all of the patient education info for hydroxyurea. Of course, the PV can also cause fatigue - it is a common constitutional symptom for many. Makes it really hard to figure out what is what.
EleanorPV suggested considering a switch of meds to Pegasys. This is the first choice for many hematologists when cytoreduction is needed for someone your age. HU is teratogenic (causes birth defects) so it is imperative to avoid pregnancy. Hopefully you also received the cautions about how to protect your husband from exposure to the HU since you are married. Please do advocate for yourself. HU is cheaper than Pegasys so many systems push docs to use it first. It is not the best choice for everyone, though it works great for some.
I also have JAK2+ PV. Was diagnosed with ET over 30 years ago. It progressed to PV about 7 years ago. I have had a good life and continue to do so despite some challenges. Please do know this can be managed, but you may need a different approach to treatment. What many people with MPNs run into is that treating docs, even hematologists, have relatively little experience treating MPNs. I changed my treatment protocol after I consulted with a MPN-specialist. It made a big difference for me. If found the MPN-expert doc on this list mpnforum.com/list-hem/ .
All the best to you.
Thank you for that! I have heard from articles that a specialist for MPN is best, as well. Thanks for the link. My dr. Did warn about pregnancy, we took extreme measures to prevent that! I seem to have more symptoms than most, my dr. Tends to think I have other health issues that may be causing them. But I've read a lot about peoples symptoms and it seems all of mine can be linked. I've seen many specialist to rule out other health concerns. So far the only thing popping up is one positive blood test that can possibly be linked to an autoimmune disorder, but it's not specific and 9% of the population test false positives. I have bone pain, lots of nerve sensitivity especially in my legs. Poor memory, word finding problems, fogged thinking daily. Amongst many others. Are these common for you?
It sounds like you are experiencing some common PV-related symptoms. It can be really hard to figure out what is the PV, what is the HU, and what is other medical conditions. If you are JAK2 positive like most with PV, then the role this mutation plays and the issues with the JAK-STAT pathway than can be involved are complex. It is important to know what your JAK2 mutant allele burden is as it bears on symptom load and prognosis.
I am fortunate to have a relatively indolent form of PV, in part because my JAK2 burden is only 25%. I experience moderate erythrocytosis and thrombocytosis. I do have mild splenomegaly, but have never had a single incident of thrombosis (no DVT, TIAs, etc). I did have Stage 1 hypertension (135/95), but the BP dropped to normal (115/75) once the erythrocytosis was under control. I have never experienced any fatigue until the venesections to treat the PV made me so anemic. The level of fatigue is tolerable, so I generally just soldier on. I have actually had more trouble with the secondary symptoms that I believe are related to the JAK2 driven inflammation: osteoarthritis, plantars fasciitis, GERD, insomnia, eczema, etc. I have had some success with treating inflammation symptomatically (e.g. Turmeric-Curcumin), but am working to find more comprehensive solutions.
Do please be sure to consult with a true MPN-Specialist. The approach I use is that I have a local hematologist who is a terrific doctor, but not a MPN Specialist. I do have a MPN Specialist who I have consulted who advises both me and my on-going local treating hematologist. So far so good with this approach. I am following a somewhat atypical treatment regimen for age 64 with PV - phlebotomy-only - no cytoreduction meds / no aspirin. The aspirin made me bleed/bruise too much. I turn out to be HU-intolerant in having toxic effects even at very low doses. In my case, the benefits are not worth the risks. True for me, but not for all.
I would encourage you to consider reviewing all of your treatment options with a MPN Specialist. Looking at the benefit-risk profile for each choice with a doctor that truly has the expertise you need is definitely in your best interests.
Thank you for all the insight! I will have to look into my jak 2 burden. That's my concern is I may have other issues going on that may be getting over looked because of my PV. I have so many bizarre symptoms that none of my dr.s can figure out what they may be from
I can sympathize with the array of symptoms issue. It can be very hard to figure out sometimes. I also have Neurofibromatosis Type 1, which is another genetic condition. NF1 is a Rasopathy - it causes disruption in another kinase system - the RAS-MAPK pathway. The RAS-MAPK pathway is downstream from the JAK-STAT pathway, and they interact at multiple levels. Both kinase systems have wide-ranging impact on the body. Neoplasms are more common with both conditions. The impact of having two kinase-based disorders is not well understood and the database of people with both is rather small. Add to that the impact of unrelated issues, and it gets really hard to figure out.
It does sound like getting the information together that you can, such as the JAK 2 Mutant Allele Burden and consulting with a MPN Specialist would be a good place to start. I have found that when dealing with multiple specialists, I have to be very assertive about collaboration. Basically, I have to be my own case manager and be sure each doc takes all conditions into account and treats me in a holistic fashion.
All the best to you.
I have ET but I suffer badly with fatigue. I work full time and my employer keeps suggesting I reduce my hours to part time or work longer on days where I feel well so I can have shorter days where I need to. I like you used to work out a lot. Mine was 6 days a week but I can no longer manage it. I went to the gym last week and it took me a few days to recover. Currently only taking aspirin and my fatigue goes through good and bad phases. Hopefully your "good" fatigue cycle is on its way
Yes it's a roller coaster, improves and returns. Just hard managing work, my kids schedule, and being able to maintain a healthy relationship with my husband.
I've had PV for about a year. Hydrea brought the blood counts to safe levels for me.
But I still feel extreme fatigue at times, such as today. Maybe three times this week. It's awful. I feel like I can't think straight.
My hematologist thinks it's low iron levels. She says if I take iron supplements, then she'd have to increase the hydrea or do phlebotomies. That doesn't seem like a good tradeoff.
In the meantime, I'm trying to make sure I get a good night's sleep, exercise during the day, drink a lot of water.
Music helps sometimes! I still feel the fatigue but upbeat music helps me get through the bad days, at least sometimes. I know it sounds crazy but it does help.
We thought mine my be related to low iron too. My counts were normal but started taking supplements anyways just to see. It didnt help, only caused more GI issues for me. Then my dr. Told me they had new information on how it's better for PV patients to have lower iron counts as it helps with lowering RBC counts as well. Best of luck to you.
So sorry to hear you are suffering from fatigue - especially since you are so young and have young children. This is what I found helped:
- reducing work to half-time
- Iron suppléments
- vitamin B12 injections
- regular exercise
As far as the iron and B12 go, it’s really worthwhile getting your levels checked. Supplements made a huge difference to my fatigue levels. ( I have PV so had to be very carefully monitored with the iron. )
I advise you to build up the exercise slowly and avoid doing too much too quickly as you will only become discouraged. I started off walking and am now going to the gym three times a week and cross-country skiing on the weekend. I would not have believed this was possible even just six months ago.
I hope things improve for you soon.
Thank you. I have had both of those levels checked and I'm good there. Every time I try to get back into exercising I feel like a fall back even harder. I'll just keep trying I suppose and hope for the best. Thank u again for the response. Glad to hear you are improving
I was the same during the 4 months of taking HU. I stopped it and only on aspirin after my haems advice. Feeling much better now!
So are you doing phlebotomies or on another medication now?
I had only two flebotomies and am 42 now from 49. Not allowed iron.
My platelet count is what I struggle most with. Some times the phlebotomies spike my platelet levels. And others drops my H and H but platelets dont come down enough. That's why my dr. Opted to put me on the HU
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