These days my lower legs ache all the time. They ache regardless of whether im active or inactive.
Do you think this ET/MPN related or something else entirely?
Leg ache. ET or unrelated? : These days my lower... - MPN Voice
Leg ache. ET or unrelated?
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BloodZero
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My legs ache too. I am wondering if it is my varicose veins, and am going to discuss with my doctor. Interested in hearing if others think it is related to ET.
I too get a lot of lower leg aches and stabbing pains. However I'm awaiting a hip replacement at the moment and due to the pain from that it's also caused bursitis to my knees which is very painful. I did mention it when I went to Guys recently, but it didn't appear to ring alarm bells. I'm hoping once surgery is done things will settle down over the next few months. However these days muscle aches seem to be a common symptom in both arms and legs.
MazcdPartnerMPNVoice
hi BloodZero, so sorry to hear that you are experiencing this. It would be best to get this checked by your doctor to find out what is causing it, it may not be related to your ET, so advisable to get it investigated. Best wishes, Maz
Thanks for your reply. Yes, of course ill get it invested. But i want to know what others have experienced.
Yes , I have had achey legs, used to sit rubbing them, walking up and down, it seemed to get worse at night, so sleep was becoming a problem.I started drinking Hepar water, and I don't have achey legs anymore, they are more settled at night too. Hepar water is high in magnesium.
Hepar water I get from France, cheaper than buying it in UK.
Try a water high in magnesium, it may help.....
Best Wishes
Angelina
Thats interesting because i was taking Magnesium tablet but they gave me heart palpitations. But it may be a dosage thing. The tablets i was taking was about 400mg where as one cup of Hepar water has about 42mg. How much Hepar water would you say you dring in a day?
At first I drank a Litre straight down the hatch and then I did another 500ml (I must of needed it) and the pain seemed to disappear instantly I also didn't feel dehydrated ( I always had a terrible thirst and dry mouth)and also the skin itching went away too.I would say a litre bottle now lasts 2-3 weeks. If I feel an ache coming on I will have a glass.
I think your body will tell you once it gets in tune.
Maybe start slow because of the heart palpitations with the magnesium tablets .
I think your body will tell you once it gets balance and in tune .
Best Wishes
Angelina
Hi BloodZero, How are you feeling? How are the legs doing?
I was wondering if you have tried an Epsom salt bath? If the supermarket had run out I would buy Dead sea salt, it seemed to give the same relief. I usually put in a cupful/ half a mugful and if I was having a really bad day I would put in a mugful and sit/lay for 10-15 minutes . It seemed to quiet the legs, also eating a banana in the evening.
Best Wishes
Angelina
Thanks for your suggestion. I do use Epsom salt bath. I also use a massage gun, wooden roller hand massagers, foam rollers, various hot ointment \ligaments and stretch alot.
Are you on chemo? I did read somewhere that in Australia they don't give MPN patients Chemo until over the age of 65?If you are not on the Chemo that maybe the reason you are suffering so much with your legs.
I had difficulty in the UK getting diagnosed and my main complaint was my legs, they felt so heavy.....but the doctors kept saying there was nothing wrong with me..... Once I got the hydroxycarbamide the legs settled , well at least I was able to walk.
Best Wishes
Angelina
Try an electric top blanket, you can wrap your legs , it is very comforting. I did try a weighted blanket but I found it irritating .
Sorry to hear about the leg ache. This is a symptom that may or may not be related to the MPN and/or its treatment. It is something that something that should be followed up with a MPN Specialist who is familiar with the different ways that a MPN can manifest.
This is a link to some information of MPNs and pain. mympnteam.com/resources/pai...
Pain is a warning that something is wrong in the body. It should not be ignored. Once you figure out what is causing the issue, you can find a way to intervene.
Yes of course ill get it investigated with my GP and hemotologist. We dont have Mpn specialist here. Never said i was going to ignore it. But i have reasons for wanting to know if its common among ET patients.
If you can't access a MPN Specialist then doing your own research is all the more important. Not sure where in Australia you live. There are 10 MPN expert docs listed in Australia, 6 in Melbourne and one each in Gosford, Kogarah, Adelaide, and Perth. mpnforum.com/tsr-the-list/ I believe that telemedicine is an option in Australia. If you wish, perhaps you can arrange a consult if there are no MPN expert docs near you.
Saw your note below about it feeling more like bone pain. That is a well-known MPN symptom. Here are a few links to information on that.
Thank you very much for this link, Hunter! very helpful!
I have what seems to be hereditary thrombocythemia and this seems to be a symptom that has been with me for years. For me it is bone pain mostly.Having said that, you need to make sure this pain is not due to other medical issues.
Sorry to hear about the bone pain. Hope you are finding some relief with treatment. We had a recent conversation about the distinction between Hereditary Thrombocytosis and Familial MPNs. You may it of interest.
Well my pain is not so much localized in the calf area common to DVT. Is feel deeper (like in the bone). So probably related to the ET perhaps.
Hi BloodZero,
I also have regular pains in my legs (what feels like in my bones). Dull pain, mostly at night. I have ET, but don't know if it is related. If it gets worse, I will see my GP as well.
Take care.
My mutation is germline (MPL R102C, similar to MPL R102P from the papers below) and it is involved in hereditary thrombocythemia when heterozygous. VAF also points to inherited illness, as per notes from geneticist. It seems like other family members had high levels of thrombocytes for decades, for example my dad and his mom.ashpublications.org/blood/a...
onlinelibrary.wiley.com/doi...
Very interesting. As you state, the germline MPL mutation does fall into the Hereditary Thrombocytosis category. Quite rare apparently. I hope you will be our expert on this topic as I am sure there are others with triple-negative MPNs who will be very interested. Thank you for your contribution, helping all of us learn.
My legs ache most of the time. It was bad enough to interfere with sleep. Then I switched from hydroxyurea to peg-interferon and it got much worse for a few months, then overall things gradually got better. Now, after many years, it is a combination of being habituated to it and it being less. Days go by that I don't think about it but I still have days that it's on my mind all day and nights I can't sleep. For me it is mostly upper leg but sometimes the whole leg. It is a vague, dull ache. Not a sharp pain. And I can't localize it. It's not superficial. Massage is nice, but it doesn't help the aching other than being a brief distraction. Like you, regardless of activity. My haematologist advised that it is a symptom of my ET and warned that the interferon would make it worse for a while, which it did. But I'm glad I put up with it as recent years I am much better.
Your haematologist's observation is interesting to me as I have PV and am on Besremi (interferon). My HCT almost immediately came into the normal zone, and for months now my platelets have normalized. Several of my symptoms/side effects got worse in the last few months, and bone and joint pain was a new symptom. Bone pain, etc. has died down, whether from the supplements I decided to take (hyaluronic acid and MSM, tumeric) or because that specific pain was part of Besremi's getting up to speed, I don't know. Because of my complaints, and because blood counts (aside from red blood) were good, my oncologist lowered my already low bi monthly dose to 50 mcg. I'll be tested in a few months to see if good effects hold and bad effects fade. I noticed I did not have my customary extreme fatigue two days after the shot this time.
My HCT came into normal range within a few months of starting the interferon, after several years of needing phlebotomy every few months. All my routine blood tests are now normal range except for a slightly low white cell count and slightly high uric acid. Thyroid function tests are marginal but within normal range lately, after a period of being slightly out of range. My understanding from haematologist is that the interferon stimulates the immune system which makes it more active against the abnormal blood cells, including in the bone marrow. Initially, I had a noticeable reaction to each weekly injection: several days of feeling uncomfortable with flu like symptoms, fatigue and quite uncomfortable legs. These reactions lessened gradually. Haematologist explained that the immune system gradually eliminates most of the abnormal cells. A few months after starting interferon I had a test for abnormal cells circulating and counts were not zero but quite low. Haematologist advised this was a very good response. Now, the days after injection are not much different from any other though I still, habitually, take it easy and rest after the injection most weeks. But, if I'm busy, I just carry on. I started on 60 mcg weekly then when blood counts stabilized dropped to 45 mcg hoping to reduce the discomfort. A bit over a year ago, haematologist advised I go back up to 60 mcg because HCT had come up a bit and because the side effects were no longer bothersome. So now I am on 60 mcg weekly with not much worsening of symptoms in the days immediately after injection. I do still have a general fatigue and usually a bit of discomfort in my legs but I'm quite used to it after so many years. It's a bit hard to say if the symptoms are less or I'm just more used to them. Overall, I have been more stable on interferon and after the first year have had much less impact from discomfort and fatigue than I had previously, before or after switching to interferon.
Quite similar to me in some ways. I am 66 and had high platelets for decades before diagnosis in 2022. It sounds as if you are on Pegasys, not Besremi, but are also reacting quickly to the interferon. We are lucky in that way, but perhaps the downside is the body sometimes over reacting? Did your doctor say that the interferon stimulating the immune system has a down side, for instance, overblown "fighting" of allergens or viruses/bacteria? BTW, somehow I escaped Covid completely, though I must say I've been pretty damn careful and still am rather cautious compared to most folks.
Yes: Pegasys not Besremi. My understanding was that the immune response was a good thing - the essential purpose of the interferon, but a bit unpleasant until the abnormal cells were under control. Also that 60 mcg / week was a moderate dose to start with, to be adjusted up or down according to reaction. I see others say they started on lower doses and worked up. I guess that would have been less unpleasant but may have taken a bit longer to suppress the abnormal cells. I'm back up to 60 mcg/week now, after a year or two at 45, as side effects are fairly minimal now.
Regarding Covid, the advice was that the interferon should reduce risk of severe infection, by way of a stronger immune reaction, so I shouldn't worry too much about it but I might react a bit more strongly to the vaccinations.
I had three Covid vaccinations without serious side effects. I didn't get Covid until Nov 2022. Not too bad, but very tired for many weeks. I too was very careful about Covid exposure but then my wife caught it at a company gathering and I developed symptoms and tested positive about a week after her. I haven't had Covid or much of anything else since, but I work from home and minimize contact / exposure, other than shopping and family visits. I live rural with plenty to keep me busy on the property, and I'm rather introverted, so a quiet life suits me.
It's unclear to me whether my low WBC counts are due to the disease or the treatment, but they are at times low enough that GP has advised me to come in immediately if I got any sort of infection. I notice more frequent, minor skin infections in recent years but a bit of topical antiseptic or antifungal has taken care of those. Maybe that's just getting older. Wounds heal more slowly now too: months instead of days or weeks. But I have, fortunately, had no infections serious enough to need a visit to the GP. I would feel better if my WBC counts would come back up, but they have been low for years now, so I guess that's not going to happen.
I have been on hydroxyurea for 9 months now and i have leg pain daily. I have found that the less active I am the more pain I have. I have a headache everyday as well. I went to a vascular doctor to check blood flow to my lower legs and nothing is out of the ordinary. I have good blood pressure/flow to my feet. I must be a hydroxyurea side effect to the nerves.
Good luck!
I had the same experience. Had my blood flow checked in legs by everthing is ok. Thanks for you comment. It helps. 👍
Morning
I also have leg ache in both which I do believe is circulatory in nature . It got worse over several years during which time my platelets were rising at the time unknown to me .
Sleep was also disturbed by fidgety legs so I do think sticky blood is the cause . This was helped when I started Clopidigrel which really helped .
When I started Hydroxycarbamide the pain changed I have stinging sensation in my calves and slightly blue staining of the skin itchy ankles sometimes radiating up the leg .
My Harmatologist tells me none of this is due to ET or MPNsbut from my point of view I can’t agree . Keeping Hydrated helps I think activity good for mind but doesn’t seem to make a difference .L
Hi. I was getting a lot of joint and bone pain while i was on the Hydroxy, a couple of weeks after stopping taking it the pain disappeared, unless of course it was coincidental.
Interesting 🤔. Thanks for your reply.
I was getting severe cramps in my legs and hands every night. My father and siblings have issues with cramps, so I am inclined against it being a side effect of HU. However, I started taking magnesium supplements and that was very helpful. It might be worth a try and see if it helps.
Yea, tried magnesium. Did nothing for me except give me heart arrhythmia.
I am sorry to hear that, Did the arrhythmia clear up when you stopped?
Yes. Within about 4 days of stopping the magnesium.
I was diagnosed with ET 14 months ago and am on Hydroxy. Within 2 weeks of starting the med I developed symptoms of tennis elbow. As time progressed Sore legs and back of heels when walking is becoming worse. Told my consultant who said that at my age in my 60’s, I will start to have aches and pains, (old age) but requested a blood test from GP and results were…. No rheumatoid arthritis and no inflammation in my body so all a mystery to me
Suggest not just accepting "you are old and achy" as an acceptable answer. If wear and tear on your joints is the issue, that is a diagnosable and potentially treatable condition. There are some other factors that bear consideration.
The upregulation of the JAK-STAT pathway that causes ET does more than make the body produce too many platelets. It also causes the overproduction of inflammatory cytokines. This systemic inflammation can have wide ranging effects. There are many inflammatory pathways in the body. The standard tests for RA and simple inflammatory markers does not test for all inflammatory pathways. While you may not have RA, that does not mean that there are not other issues to deal with.
It is also worth noting that hydroxyurea has joint pain as a possible side effect. That is not to say that is what you are experiencing, but the timing is suggestive. At a minimum, testing for uric acid levels would be a good idea given that hydroxyurea can have this as an issue (note renal impairment-gout as possible side effect). There is no downside to checking and it will rule this out as a potential cause of the joint pain.
Pain is a warning that something is wrong. It should not be ignored. A significant change in pain levels is something that requires investigation and appropriate intervention. I do experience systemic inflammation due to the MPN. I consult an Integrative Medicine doctor who is treating for this condition. The treatment definitely helps.
Suggest not allowing yourself to be fobbed off regarding your concerns about joint pain. It may be something that will respond well to appropriate treatment.
Hi BloodZero Can you believe it I replied to myself 🤭
How are you feeling?
How are the legs doing?
I was wondering if you have tried an Epsom salt bath, if the supermarket had run out I found Dead Sea Salt had the same effect.
A cupful/half a mugful, on a really bad day I would put in a mugful and lay in the bath for 10- 15minutes helped the legs to be quiet.
I also found eating a banana in conjunction with the salt bath at night seemed to generate relief allowing restful sleep 😴
Best Wishes
Angelina
Hey Blood Zero... 
Been out of action since my accident... Not sure how long ago you made this Post... (?)
However, I personally have had aching legs for longer than I care to remember... I therefore believe that they are definitely related to my MPN (Post Et / MF - 2016).
Magnesium I find does help, but so too does regularly exercising, hot showers, and a good massage every so often...
Because I tend to cycle long distances, when I first commenced, my cramps & aching legs became a much bigger problem... However, since learning how to properly maintain my levels of hydration & nutrition, they are largely a thing of the past these days...
Hope something I said here helps buddy...
Best wishes
Steve
Thanks for your input. 👍
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