Hello, I hope everyone is well 😊I just wanted to ask if anyone has eg pains.
I have PV nearly 2 years diagnosed, on venesections and asprin, but may be going onto meds.
I have always had burning in my hands and feet, with a bit of discomfort in my legs.
Recent it had got so much worse, never goes away. The pain us almost verging on the unbearable at times. It's like I have been climbing mountains for days.
I also have a sickening pain in my right shin bone, which can be excruciating for a few seconds. This has gone on for a longer period and comes and goes.
I also have the feeling of restless legs into the bargin. I have mentioned this to my haematologist but over recent weeks it has been just horrible, my legs feel like the are silent but not 😔
Anyone had similar issues and any ideas how to ease the pain ??
I am not one for sitting around but sometimes I have to sit with myl egs up, and occasionally they feel worse when I do this 🤷♀️
Many thanks for your thoughts
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Mauritiu
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Sorry to hear you are experiencing these issues, which do sound like they may be related to PV and the treatment. It may be that you are experiencing more than one issue causing pain. Note that there could also be non-MPN issues involved. From a MPN perspective, there are some things to consider.
MPNs can cause bone pain, particularly in the long bones. "This pain is believed to result from an excess amount of cell turnover in the bone marrow, inflammation of the periosteum (the layer of connective tissue that surrounds bone), and hardening of the bone (osteosclerosis). According to the ASH study, 48.5 percent of people with MPNs experience bone pain." mympnteam.com/resources/pai....
The burning pain in your hands and feet is a common PV microvascular symptom. My MPN Specialist calls it "PV Toes." You may get redness and swelling as well. This can present as erythromelalgia or be more subtle but still painful. Some people need a higher dose of aspirin or another antiplatelet medication to manage this symptom. I did experience this issues. An appropriate dose of aspirin eliminated the problem.
Restless leg syndrome can have a number of causes. The intent of the venesections is to induce chronic iron deficiency to reduce the erythrocytosis. Unfortunately, RLS is one of the potential adverse effects associated with iron deficiency. I experienced a number of adverse effects due to venesection-induced iron deficiency that were worse than the PV symptoms. This lead to my decision to initiate treatment with the interferons.
As a side note, I also experienced severe leg cramps, particularly when sleeping. The issue was magnesium deficiency likely caused by long-term use of Nexium. An appropriate dose of magnesium solved this problem.
Given what you describe, it would be very reasonable to consider cytoreductive medication. You should have a choice in which medication to use. Hydroxycarbamide (HU) and the interferons (IFN) (Pegasys/Besremi)) are two common first-line choices for PV. Jakavi is a second-line option. You will need to compare these choices if you decide to begin cytoreduction to decide which is best for you.
I opted for the IFNs, Pegasys then Besremi, as I am refractory to and intolerant of HU. Treatment with the IFNs has been very effective and easy to tolerate. My quality of life has improved compared to the other treatments I have tried (HU, venesection). In fact, I feel better now than I did 10 years ago.
Suggest you review all of the symptoms you describe with a MPN Specialist. Working with your MPN care team, you can find solutions to the symptoms you are having. Wishing you success in doing so.
Thank you for your helpful reply. I do feel my symptoms are due to iron deficiency. I am not very tolerant of venesections, I have had 4 this year, hence the conversation I had with my haematologist regarding commencing medication.
Separate to PV I have recently had a catheter ablation for SVT and an xray for hip pain, a completely different pain, which revealed arthritic changes is my lower spine. I don't think these are related to my leg pains.
I have information on both HU and interferon, a difficult decision to make.
I have discussed the bone pain before. It had been set for months but back now with vengeance.
I see my haematologist in early October for further review.
At this moment my feet feel like they are going to self combust!!!
I have also had a catheter ablation for paroxysmal atrial tachycardia as well as osteoarthritis in different joints. On the surface, these issues are unrelated. In reality, systemic inflammation caused by the JAK2 mutation can exacerbate a number of different problems. Controlling inflammation is a vital part of managing a MPN.
Many MPN Specialists would recommend one of the IFNs over HU for a patient age less than 60/65. Some recommend IFN for most patients, but not all do, It is not a black and white decision. You have to review the contraindications and cautions for each medication and compare to your profile. You also have to decide on what your treatment goals are. Do you want to target reduction in allele burden as a treatment goal or will you just consider blood cell numbers? What is your risk tolerance? Looking at the the potential adverse effects, which risks are you more willing to take? Which adverse effects will you tolerate if you do encounter them?
A more subtle question has to do with Mechanism of Action. HU is a cytotoxin that inhibits DNA activity in hematopoietic stem cells and other cells in your body. IFNs are immune modulating medications with antiproliferative effects. Do you have a preference based on our philosophy of treatment and treatment preferences?
We each have different treatment preferences. We each respond differently to the medications. The good news is that treatment can be effective and make a significant difference in managing the MPN.
I do think I need to work on the inflammation part of managing PV, I am health conscious, always have been, but perhaps too many 'naughty' things creep in, but you have to live a life 🥂Interferon has always appealed to me because of the what you have indicated in your reply, I feel the HU perhaps has a scatter gun approach rather than targeting the proliferation of blood cells. I dont know my AB as it is not measured in my health area 🤷♀️
One concern I have with interferon is the possible effect on mood. I have just come out of a 6 month or more period of depression and physically and mentally feeling so much better past few months.
The debilitating fatigue seams to have resolved for now, I was put it down to the venesections, low ferritin but who really knows.
This was why I had the conversation around starting medication. Mabye it can be delayed as the fatigue is so much better? But these leg pains and restless legs are a killer, not to mention the increased tinnitus into the bargin!! Another story ..
I think my tolerance for medication is mostly good, and I feel I can tough things out till they improve if side effects are problematic.
Also my SVT was horrendous and really affected me, plus being on bisoprolol for this really didn't agree with me. But thankfully this is behind me now.
I had it. I looked for a solution because it are some microcirculation problems, according to PV literature. I started a strict antiinflamatory diet, proper exercise, Bemer massage (look for it), walk barefood all you can, drink water never alcohol, sunbaths for the vitamine D we need (are you checked it ? and magnesium, and more vitamins and minerals checked ?), etc. Changing the lifestyle. .
Thank you for your reply, some useful information, maybe I need to eat a ‘cleaner’ diet, I have not been good lately, but it has been my sons wedding! I am quite active yoga walking and swimming every week. I have been considering magnesium . I haven’t had any levels checked, maybe an idea. Back to being more healthy this week 😊
I had bone pain in my shins and numbness in my fingertips, which would sometimes turn white or red or blue. I found that at least for me those symptoms went away soon after I started treatment with Besremi.
I feel your pain Mauritiu! I encounter pretty much what you’ve described and have worked out my own arsenal to counteract. I take magnesium tablet before bed to ward off the dreaded calf and feet cramps. Also before laying me down to sleep, I spend at least half an hour turned around on my bed and do what my daughters have dubbed ‘legs up wall’. Probably because it looks so very strange. However, it seems to help greatly with that bone gnawing pain and the sluggish venous return to the point that, when I right myself, my legs feel so much better. Then I pop a pillow under my calves and ankles to raise my legs a little while I sleep.
Foot baths with Epsom Salts seem to help with hot feet and aching feet just before bed too.
Thank you, I do legs up the wall which does help, fortunately I haven't had leg cramps so fat 😊I think I need to give magnesium a try, and foot baths, I felt my feet were going to catch fire last night!!!! So , almost painful 😖
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