hello Ona54, welcome to our community. It is very difficult when these symptoms are dismissed by haematologists/doctors, fatigue and confusion are definitely experienced by many people with MPNs in varying degrees of severity and can be very debilitating. We do have some information on our website about managing fatigue which might help your husband mpnvoice.org.uk/living-with...
these symptoms have been identified in various studies over the years, including the Landmark Survey onlinelibrary.wiley.com/doi... so it might also help to speak to the haematologist again and reference that studies/reports have shown these symptoms are being experienced by many people with ET and PV and MF pubmed.ncbi.nlm.nih.gov/269...
I hope he gets this sorted out as fatigue is not very nice at all. Best wishes, Maz
Sorry to hear that the current hematologist apparently does not understand MPNs. Unfortunately, this is all too common as MPNs are rare disorders. It is important to consult with a MPN Specialist to ensure optimal care. Here is a list that includes some recommended doctors in Australia. mpnforum.com/list-hem./
Fatigue is the most common of all MPN constitutional symptoms. Brain fog is also experienced by many, along with other symptoms like headaches, insomnia, tingling in extremities and more. All of these symptoms are related to the MPN. The JAK2 mutation does more than make too many blood cells. It deregulates the JAK-STAT pathway, which is responsible for multiple activities in the body. One of these is the production of inflammatory cytokines. The over production of cytokine is thought to be responsible for many of the constitutional symptoms people with MPNs experience.
Mazcd already provided an excellent reference for managing fatigue, Here a a few more. You will note some common themes.
It is correct that someone age 50 with ET JAK2 positive would be considered low-risk for thrombosis. The standard protocol is aspirin and monitor; however, there is more to treating ET than reducing risk of thrombosis. There is also reducing risk of hemorrhage, which is a risk when platelet levels are higher. There are also the more bothersome secondary symptoms people with Et can experience like fatigue and brain fog. Treating these symptoms is just as important as reducing risk of thrombosis. Unfortunately, not all doctors know how to treat these symptoms. Fortunately, there are those who do and interventions that can help.
Your husband has entered into what is a long journey. He will have plenty of time to learn to manage the ET. He is very fortunate to have you at his side. Your support will be a vital part of his success in managing the ET.
There are some excellent resources to learn about MPNs and how to manage them, The MPN Voice website is one outstanding resource mpnvoice.org.uk/ . There is also an Australia-based site mpn-mate.com/ .
Here are some additional resources to get started.
Thank you Hunter.We are based in Brisbane and I recall Dr Lane was mentioned as MPN specialist but unfortunately he isn’t taking new patients.I will see if any other doctors would be prepared to consult online.
I will start reading through all the suggested links.
I cannot tell you how thankful I am for this as it is a lot to process and it is great to have others who have are going through this and understand.
Hi Ona, welcome to our group. As Hunter said, having a specialist in MPNs is really important. Some of us travel to see a specialist twice a year & then see our local oncologist the rest of the time. The difference in knowledge, diagnosis & best treatment between an expert & non-expert is huge. Best of luck. Katie
Thank you Katie, it is something we are considering as the fatigue is debilitating for my husband. Thanks for taking the time to welcome us and your response.
I was diagnosed with ET jak2 at 49. The reason I went to gp was because of brain fog ( to the point I’d have to stop driving and work) , extreme tiredness, memory issues- to name just a few. As well as discovering high platelets the blood test showed I was also vit D deficient and had low ( but normal vit B12) on researching all this myself and reading how flawed and inaccurate the Vit b12 test is, I started to take high dose B12. Wow, what a difference that made. No more brain fog, stopped falling asleep in afternoon. In fact all the symptoms I went to go with vanished within 4-6 weeks. Et gives me no issues despite platelets typically being around 1300/1500.
My husband and brothers brain fog also went with B12. We have a number of friends who were having hand tremors that were cured with B12. Vit B12 has a very long list of symptoms and mimics many other conditions, including Alzheimer’s, Parkinson, MS.
I do hope you gp / haem has tested all your vits too?
Most cells, including platelets and megakaryocytes have vit d receptors. It would suggest having low vit d is not ideal either.
Also make sure they have tested folate ( which works with B12) iron and thyroid - not just the useless TSH but also free T3, Free T4 and thyroid antibodies . Thyroid is another one that can cause fatigue.
With vits in particular , being in range and being optimal are not the same thing.
Thanks Amethist, we will definitely be checking everything you suggested.This information is so helpful as we would never have thought of B12.Vit D is slightly lower than optimal but doctor said nothing to worry about.
We will be following up with our regular Gp as they ran all the tests prior.You have been a huge help.I cannot thank you enough.
I too take B12 twice a day….really helps a lot with burning feet, also I take 1 sifrol a few hours before bed (this is a Parkinson medication) and that completely stops my agonising restless legs
By the way I have had it for ten years , it doesn’t seem to progress very quickly , I rest when my body tells me to and on my great days I actually have energy to do the things I need to do, but the message here is…don’t feel guilty if you need to rest but definitely get some walking in each day
Definitely read all the forums suggestions. Just aspirin did not sort my ET Jak 2 . I am now on Peg Interferon thankfully from seeing expert MPN & most of the symptoms went , headaches, tiredness.
Really important to get the best consultation from experts . Most you can reach on emails & then get telephone consultations once treatment starts. My monthly injection has really cured all the symptoms I felt . Julia UK.
Thanks Julia for your response.We will keep searching for a solution as we cannot accept that this is just something he must live with or that it’s all in his head.He feels dismissed and doctors are insistent it must be due to something else as they say ET doesn’t cause crushing fatigue in their experience.
We will follow up on B12 as suggested with by Amethist.At this point he is ready to try anything or do anything to feel better.
Hi!Just to add to all the brilliant information already shared. I was diagnosed with ET, MPL driver in Nov. 2021. My main symptom was extreme fatigue, accompanied by a never ending headache and bouts of itchiness and night sweats. These are classic ET symptoms. Since starting treatment with Hydroxycarbamide and baby aspirin, I still get bouts of fatigue but nothing like that experienced before diagnosis. Wishing you strength and perseverance for the future.
Hi Maurabawn, our doctor wasn’t keen to start any other treatment besides aspirin.She said fatigue isn’t consistent with ET and has advised going to a general physician for further investigation.It’s frustrating for my husband as he is struggling with functioning on a daily basis.
We will be investigating all avenues as he would like to function normally.
Thanks for all your well wishes.Ifs amazing how supportive this community is.
I’m 56 and was diagnosed last year with ET / JAK2 positive.
As Hunter and many other have said, a consultation with an MPN specialist is a must. I have recently found one here in Montreal and the difference is astonishing. My fatigue, brain fog and headaches are finally taken seriously instead of just being discarded (or ‘explained’ by perimenopause). My specialist is also taking into account my parents’ medical history (severe clotting issues) as well as mine and has suggested Interferon instead of the « wait and see and take two aspirins a day » prescribed by my hematologist. It took me 10 months to find an MPN specialist and it’s the best thing that happened to me. I wouldn’t go back to my hematologist.
Learning we have cancer, even a « calm » one like ET is a scary journey and it took me quite some time to come to terms with that diagnosis. The silver lining is that ET is a chronic cancer so it gives us time to read, get the maximum information we can, adjust to the diagnosis and what it means as the urgency that comes with an aggressive cancer isn’t there (my husband died of kidney cancer).
Hi Isabelle, great to meet so many friendly welcoming members.We don’t feel so alone anymore.
I think the issue is that in Australia we don’t have many MPN specialists but we may do an online consult just to get further clarification.My husband is due to see a General Physician to ensure it isn’t sleep apnoea.He was checked for this 2 years ago and the testing didn’t show anything.
It seems we have to be our own advocates and pursue all avenues until it’s resolved.
I am so sorry to hear they aren’t taking him serious. One of my pet peeves with medical professionals. I agree with everyone he needs to see a MpN specialist as one of the reasons they treat these is symptoms. He at least needs the options. GP should run some other tests to be sure, but even if he finds something and corrects it this may persist as it can absolutely be from ET. Also make sure he is eating well and drinking lots of water. Getting good sleep. Making sure he isn’t at risk for sleep apnea. We all are not just one thing. Most of us have the MPN plus! I just know before I found out I was so exhausted and dizzy I was miserable. I remember telling my mom I had more bad days than good. And I think all of us on here can resonate with that. Wish him luck! I hope he feels better soon
Thank youKLCTJC, we are trying an anti inflammatory diet to see if this helps at all.He has been referred to a General Physicuan for other testing but they triage cases so we don’t know when he will see her.I suppose for a doctor fatigue isn’t serious but it’s impacting my husbands hugely.
Seems like everyone that had replied has been through this or is currently going through it.
What you describe it exactly what he is experiencing,fatigue,dizziness and he has brain fog.
Wishing you all the best in your journey and thank you for taking the time to respond.
I had the same problem with both family doctor and hematologist. Had a very hard time convincing them. Kept showing them articles written by experts and complaints from other MPN ‘ers until they had to believe me!! Told my hemo about this site as well. Something finally worked as he asks me now how the fatigue is doing instead of dismissing it. Keep telling him and showing him what others say.
Hi Scrollernut, we are looking at getting an appointment with a MPN specialist and hopefully they will be able to guide us to better treatment or other options.We are looking at everything like vitamin levels and sleep apnea.
Once we have excluded these and have proof then hopefully his fatigue won’t be dismissed.
My brain fog and fatigue were definitely due to ET and HU helped tremendously. If the symptoms continue on aspirin, see if he and his hematologist would be willing to do a trial run of HU (or other). It took a month or two in my case to notice the improvement in brain fog, and a little less time for fatigue.
Hi Nightshadow, did you have any side effects from HU?His haem seemed reluctant to offer anything besides aspirin and watch and wait.
She said in her personal experience with her patients with ET that fatigue isn’t a symptom.She has referred him as she thinks it’s something else causing it.
Hopefully I will return in a few weeks with an update.
Fatigue not being a symptom surprises me very much, fatigue (or tiredness) is listed as a symptom on NORD, cancerresearchuk.org, mayo and cleveland list weakness as a symptom, which for me can mask as fatigue. And brain fog is definitely on the list as well. It may very well be that your husband is the first she has seen with fatigue. I would suspect that no one has every symptom on the list, I know I don't.
However, given your husband's age, I can see her reluctance to prescribe anything more aggressive as all medications have drawbacks. Aspirin can also negatively affect platelet production, it doesn't just keep the blood 'thin'. How long has your husband been taking the aspirin and has there been any change? It took several weeks for me on HU to notice a difference.
As far as looking for another hematoligist, is his current doctor looking for other causes for fatigue and brain fog, or just shoving them under the rug? If she isn't looking, I would look for another doctor. Brain fog and fatigue are not something to ignore.
He has been on aspirin for about 2 months now as they started him before his biopsy confirmed ET.
The haematologist has suggested seeing a general physician to investigate further.Hopefully it’s a simple fix with some medication or additional vitamins.
Our regular GP has been amazing with sending additional blood test results to us so maybe they can detect something from those.
As many others have said, fatigue and brain fog are the hallmarks of MPNs. My original hematologist dismissed my symptoms and said they were not caused by the MPN either. It became painfully evident that hematologist was obviously not experienced in MPNs. I also had debilitating fatigue - I was diagnosed in my 30's while I was pregnant. I advocated to get a second opinion by an MPN doctor I had extensively researched, my entire treatment plan changed. I had a bone marrow biopsy and started taking interferons. My life is completely changed now with proper medical care! I could barely get out of bed at one point and now have ALL my energy back and then some! Your husband doesn't need to suffer any longer. Keep advocating for him to find an MPN specialist. You mentioned the local MPN specialist isn't accepting new patients but I'd keep emailing and checking in. Get on a waitlist. Any doctor that says fatigue is not caused by MPNs is a sign to find another doctor asap.
Hi Emmy,thank you so much for your helpful reply.It is so interesting that you were put on interferon in your 30’s, a much younger age than my husband is now as our haemotologist was adamant that my husband was too young to go on anything except aspirin.
We are in the process of trying to find an MPN specialist that can see him or even just review his results.
Reading responses such as yours makes him feel like he isn’t going crazy as it’s almost as if the doctors think he is fabricating symptoms.It was suggested that possibly he is depressed causing fatigue which he isn’t and never has been.
I am glad to hear you are doing well.Gives us hope.Once again thank you for your insightful response.
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