I am diagnosed with PV since April this year. After a lot of experimenting with what might help my blood levels to normalise, I’m currently on Aspirin and Hydroxycarbamite which seems to keep my blood levelled. So my Haematologist is really happy and would not want to make any changes to the treatment.
However, I’m still suffering with symptoms I believe are related to my PV and I have no explanation for it. My Haematologist is a good person and I’m grateful for all his support, but from the start, I did not feel he understood the suffering with symptoms I experience. He cannot explain why I still have symptoms saying that I shouldn’t due to my blood levels. Now I’m sitting here feeling a bit frustrated as I don’t know what’s going on.
Can I ask people how they feel supported when it comes to dealing with symptoms? Do your consultants explain where your symptoms are coming from? Do you still sometimes have symptoms even though your blood levels seem stable?
My symptoms are pins and needles in my hands and feet constantly. I suffer from headaches, foggy brain and pain in muscles and joints as well as fatigue. Those symptoms are not there constantly but sometimes I have 1-3 days when I feel really bad for no obvious reason.
Thanks for reading and I’m looking forward to any thoughts.
Nadine
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Nay123
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Hi. I was diagnosed with PV + Jack2 in February, 2020. As a result, I was put on Hydroxyurea and aspirin. Though my numbers had eventually stabilized after a couple of months, it was just the beginning of the healing process and it would take several more months before I would start to feel healthy again (most days).
But, just this past week, I had my blood work done and it showed that my platelet counts had spiked, so dosage of Hydroxyurea was increased until my appointment, next week. The diagnosis explained some of the symptoms that I had been experiencing just before my doctor visit. Hopefully, for you, it's just a matter staying the course and/or some minor adjustments in order to get you a place of comfort and tolerance.
Overall, I feel blessed. If it was not for my timely diagnosis, I'm not sure that I would be here.
Thanks for your response. It sounds like your journey has been similar to mine and is still ongoing. I keep reminding myself that it can take time until the condition is managed in a way that makes feel normal. I was just a bit disheartened today as I felt my Haematologist dismissed my symptoms.
I’m also as grateful as you are that my GP reacted straight away to my extremely increased blood levels and referred me to A&E for further check-ups. From there I was referred to Haematology and I then received a call the same day of referral and be told to start taking Aspirin and was given an appointment with Haematology within 2 days. And that all during the difficult first weeks of COVID. I was very impressed and grateful.
Hi Nadine, I had a thought when reading about your symptoms and wonder if you are able to optimize your diet? B12 and Folate deficiencies are pretty common, and though specialists will sometimes look at B12 here it is practically impossible to get a folate level. Both can cause peripheral neuropathy (starts with pins and needles and progresses to permanent nerve damage and numbness if not addressed).
There can be many reasons that all the folate in wheat products (called enriched flour) is not used properly by the body which can be genetic or maybe due to something as simple as going on a wheat free diet which is very common these days. Age and stomach problems can decrease absorption of B12 as can low consumption of meat.
If you can't get tested for B12 and folate status you can try supplementing with a high quality "active" B complex. If you look at the label closely it will have methylcobalamin and 5-MTHF. Of course it is best to get all our vitamin needs from eating a good diet sometimes that is not possible. B12 deficiency is a well known cause of depression and can lead to dementia if left untreated.
You may already be on top of all this so pardon me as I don't know your circumstances. I am just being worked up for ET and also have a genetic deficiency which is quite common, that reduces the body's ability to convert folate or folic acid in food to the active form.
My brother has this too and went for years with tingling feet and anemia, saw two hematologists and neither one picked up the severe folate deficiency. Now the nerves in his feet are permanently damaged.
I know that doctors are not taught a lot about nutrition, I used to be one before I retired.
I also agree with Jack that blood numbers might change before symptoms do and to give it some time.
Thank you so much for your post. Very interesting. I’ve been tested for B12 and there were no issues. I’ve never looked into folate and will now definately do. Thanks again. I’ll speak to my doctor as well if it can be or already has been tested.
I always have iron deficiency, even before the diagnosis, and put it down to being a vegetarian for over 25 years. I also have some symptoms that might be related to the iron (I suffer with restless leg syndrome when levels go really down). However, my Haematologist lets me take low dose iron which slowly increases my levels without having a negative impact on RBC and Platelets.
Let’s see if I can widen my knowledge in regards to Folate as well. In the end, we are all becoming specialists 😁
Hi, I understand what you are saying, I've had pv for 2 years now, currently on 1 hydroxy and aspirin a day. The doctors are very good with the clinical aspects of our treatment, The symptoms are a bit of a grey area and leave me feeling misunderstood. At times I've spoken about my increasing spleen, my itching after washing or just sweating, headaches, and night sweats and bone pain. They listen but then move on with the conversation. The thing is apart from the itching my other symptoms are intermittent so Its hard to criticize them. I glad you raised this as this site is the only place to share our concerns.
Sorry to hear you’re experiencing similar issues. I’ve learned already a lot from all the responses I’ve got, maybe it can help you, too? I was also thinking about complementary therapies such as Acupuncture for my pains, not sure if you’re open for that as well.
Thanks nay123 for replying, I have tried acupuncture when my psoriasis first flared up. I liked the procedure but it didn't help although one thing hydroxy has helped me with has been my psoriasis. The responses I receive have been reasuring, my family who care for me a lot don't understand this pv thing so I only speak about it on here.
Dear John, I’m sorry to hear that your family is unable to understand PV, it shows even more the importance of this platform. If you feel you wanted to speak about your condition with someone in person, maybe you can look into some kind of buddying up with someone. There are schemes. Are you aware of that? Also, emotional support is provided by some charities. I get mixed reactions from family and friends but luckily most are understanding and supportive, but in the end we have to live with it and I still feel it’s important to speak with people who „really“ understand. All the best for you. Nadine
Hi Nadine, thanks for you reply, I do have a bit of a problem talking about pv, to a lot of people including doctors it's not very serious. A bit like type 1 diabetes,montinered for life, treatable but not curable. I tend to agree but then when a new symptom comes along I don't have anyone to talk too with understanding, so your suggestion of a buddy could help. I will ask the admin on this site. Many thanks regards john
I have PV and constantly have pins and needlesIn my feet and in my hands as well.. I know it’s related to my PV as I never had this before my diagnosis 2 years ago. My hematologist is a bit dismissive about it and I am frustrated as well.
I’ve tried adjusting my diet- have very little sugar and keep my diet alkaline - that helps.. when I get too acidic the tingling is worse....
I sympathize w you..... it’s uncomfortable rather than painful.....
I understand your frustration. I’ve never had pins and needles before my treatment with Hydroxycarbamite. I read that a few people with PV or ET suffer with it and i was surprised that I didn’t at first when I was diagnosed as I had most of the other symptoms. Once I started on Hydroxy, it started. When I talked to my Haematologist about it again yesterday, he suggested an x-ray of my neck due to the possibility of a trapped nerve. I don’t have any neck problems. I was so disappointed and frustrated. I mean surely not everything I will ever suffer from will be related to my condition or the treatment, but it was really dismissive to suggest that the pins and needles in my hands and feet are from a trapped nerve rather than a symptom that I feel is likely to be related to PV and the medication.
I’ll spend some more time looking at how diet could have a positive impact on the way I feel. Thanks for the advice.
Wow, your platelets are even lower than mine and you still have symptoms. I’m sorry to hear that but it also helps me to realise it’s not just me. Thanks for that.
I have ET not PV. SO feel free to dismiss if irrelevant. I experienced pins and needles once and mentioned it to my blood nurse. She put it down to a one off experience but if an on going issue said that aspirin/ clopidogrel would be increased.
Thanks for your response. It just made me think. I know that Aspirin makes the blood thinner. But why do we with PV and ET still need Aspirin when the blood levels are within the notmal range? I think I have to read up a little more about how Aspirin actually works to understand.
After my diagnosis six years ago. They started with aspirin and phlebotomy. Not much success lowering my hematocrit or platelets. They started my on Hydroxy, increasing the dosage to 1500mg/day over the first two months. Some symptoms were relieved after that. But others appeared. It became aware to me that some of the side effects of Hydroxy are similar to PV. I still get occassional headaches, extreme fatigue , night sweats, leg cramps. Hydration is critical. I also try to watch diet and exercise. As my primary care physician said, the side effects are better than the outcome would have been without treatment !!
I agree completely with you and your physician. My current symptoms are definately better than what I’ve experienced the 6 weeks before I was diagnosed and treatment started. It’s still frustrating to have periods when the symptoms take over, luckily only for a couple of days. Everytime I feel unwell again, it’s that little bit more difficult to deal with as I consider it as a set back. I’m also struggling mentally and my work, even though supportive so far, suffers as well due to sickness absence. I’m just really keen on making more improvements to my life.
Looking at diet and exercise is a good advice. Thanks.
The deregulation of the JAK-STAT pathway does more than increase hematopoiesis. It also causes the constitutional symptoms that many of us experience. Many hematologists do not have the expertise to recognize and deal with the constitutional symptoms that can be associated with PV. Hydroxyurea does not work for everyone in controlling these symptoms, though it will usually reduce hematopoiesis. The good news is that there are other medications like PEGylated interferon and Ruxolitinib that can be more effective in treating all of the symptoms of PV. It is very important to consult with a MPN Specialist in determining your treatment plan, as most hematologists do not have the KSAs to provide optimal care. Here is a link to some docs with MPN-expertise. mpnforum.com/list-hem./ . Note that seeking a second opinion with a MPN Specialist is your right as a patient. It has nothing to do with whether you like your current hematologist. Ethical doctors always welcome input from a colleague with greater expertise than their own.
Planti makes an excellent point about checking your basic nutrition. I also experience Vit B/Folate deficiency and need supplements. If you are having nutritional levels checked, suggest checking Magnesium as well. There is some evidence in the literature that HU can contribute to Mg deficiency. Also be aware that HU can cause headaches, drowsiness, asthenia (low energy) and dyspnea (short of breath). It makes it tricky to figure out since the PV can cause some of these things too.
That circles back to consultation with a MPN Specialist. This is the approach I take with managing PV. I have MPN Specialist I consult with at least annually (who is 2 hours away). I have a local hematologist who I really like (who is by his own definition not a MPN expert). The local doc handles on-going care. The MPN specialist advises us both on my treatment plan and answers questions as needed. This approach works really well.
Thank you for your reply. Very informative and already covers a few things that go through my mind. I’m not super happy with Hydroxy also due to the potential risks that PV could develop to MF. I was thinking about discussing a change of medication due to that but wanted to leave it for a couple of years as I did not want to mess up how far I’ve come already. However, considering that my symptoms might well have to do something with the current medication, worse reconsidering.
Magnesium check up is now on my to do list, thanks.
I’ve also started thinking about a 2nd opinion/advice from a MPN specialist. It is good to know that I have the right to do that. I was wondering about that. How would I get an appointment? Would I need to be referred by my Haematologist or GP? I’d appreciate further advice on how to make that possible.
Whether you need a referral depends on your healthcare system requirements. In my system, I do not need one. I just make the appointment on my own. If you need a referral, it should be no big deal to get one. It is absolutely worth doing. Do whatever it takes to make it happen.
I understand why you would have concerns about HU. I am HU intolerant and had toxic effects even at sub-therapeutic doses. Other people do tolerate it better, but not everyone can. One thing HU cannot do is improve the odds of avoiding progression into MF. It does not work that way. The only med with prospect of preventing progression that I am aware of is PEGylated Interferon. There are some promising results in the research, though it is not a certain thing just yet. I am currently on a phlebotomy-only protocol, which is working for me. When I need to go back to cytoreductive medication, I will opt for PEG-IFN. In the interim, I will most likely opt for PTG-300 , which is a hepcidin mimetic that reduces erythrocytosis when it gets FDA approval. It is important to understand that all of these meds have a risk/benefit profile. You have to determine which one is best for you.
Hope all goes well as you consider all of your options,
Thanks again for your reply. I will try and get information on how to get referred to another Haematologist. I really like the idea of just getting that alternative feedback. It just shows that our conditions are not straight forward and in that point, my Haematologist was right, it takes time to find the right treatment for the individual. If that includes a change of medication at some point, I’ll try it as well.
If you have PV and you are 'stablilized', meaning your bloods are as good as they can be given the disease, its frequently found that symptoms are still present. Doctors don't know the exact mechanisms but PV is very complicated and blood travels throughout the body - the good blood work doesn't change the what is happening to the cells. Look at the work of Dr Ruben Mesa and Dr Robyn Scherber - this is exactly what they work in - symptomology of MPNs and they have done groundbreaking work, expanding how doctors understand our day to day lives, not just bloodwork.
Thank you so much for your message. It makes so much sense what you said that even though blood levels seems normal, there is still an abnormality in the production and changes to the cells. I will definitely follow your advice and look at the work of the Drs. This might actually be the kind of information I’m so desperately looking for.
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