Just wondering if anyone else is suffering with severe leg cramps - sometime toes too ?? These are leaving me with sore legs for days after and I thank god my husband has been on hand on a couple of occasions to massage them hard for me.
Could this be a symptom of PV or a side effect of Pegasys ? Taking extra magnesium doesn’t seem to help unfortunately. Seeing my Haematologist in 10 days so I will be asking her advice then.
In the meanwhile I’d really like to know if others have this symptom and what remedies have been found to work.
Many thanks to the group for your valuable input.
Cheers, Rosie
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Sorry to hear about the leg cramps. When I had them, it was the magnesium deficiency that was the issue. Mg supplements fixed the problem.
Pegasys can cause myalgia (muscle pain), which might be what you are describing. The other potential factor is the PV itself. People with PV are usually iron deficient. They are even more so if they have had phlebotomies. Iron deficiency can also cause leg cramps.
Definitely discuss this with you hematologist. I would suggest also doing a complete nutritional analysis, including Magnesium, full iron panel, Vit B/folate, and Vit D. This will help to tease out what is going on and knowing your nutritional status is a good idea anyway.
Thanks Hunter. Due another CBC next week prior to specialist appointment.
My GP had noticed that over the last few months that my magnesium levels were dropping and suggested supplements. Unfortunately even taking these the cramps are much worse. It will be interesting to see my blood results.
I appreciate very much your detailed replies to not just me but everyone ! You really are a wealth of knowledge and so generous in taking the time to give such detailed responses. Thank you again.
When I started on the nutritional supplements we did follow up labs to ensure that the dosing was correct. It may be worth repeating the labs to ensure that you have the doses correct.
Hi I have had leg cramps for last few years getting so bad I couldn’t cross my legs ,squat or sit with my legs straight out on the floor without spasm .. since starting clopidogrel and Hydroxycloroquine for Sjögren’s syndrome then finally diagnosed with thrombocythaemia and Hydroxycarbamide after raised platelets for 8 years the cramps and spasms have more or less gone .
I am not sure how helpful this is and I now feel uncertain what was causing them ,definitely feel raised platelets don’t help hyper viscosity just sounds logical and nighttime fidgety legs also gone .so on my list of positives doing quite well .I tried magnesium and think that helped hand spasms …
I hope you get some slightly more constructive offerings ,but even knowing others get same symptoms is a comfort. I seemed to have such an array of conditions in my mind all related to MPN .L
Thanks Tipsy. My PV is being treated with Pegasys 67.5 mcg and apart from the occasional blip most of my bloods are ok. Magnesium gradually declining over past couple of months and not improving with supplements. Like you, I also take clopidogrel as I had heart attack a couple of years ago and I have quite a few meds as a result of this MI.
I’m glad things have settled for you and certainly hope the cramps stay away !
Ihi. I regularly get cramps in my hands, feet and legs. They are short sharps bursts. I use massage on my hands but legs and feet I tend to walk it off. I too have tried magnesium but it didn't really help . I was advised to keep well hydrated .
I started to add a little himalayan pink salt to my diet, to see of that will help.
It has now become part of something that I don't think about, I just manage ot when it happens along with a few other symptoms.
Hopefully you will get some advise when you see your haematologist .
I wish it could be something I can live with. Last nights episodes were of screaming severity. I really need an answer….. being female (tongue in cheek of course 😁) I have a pretty high pain threshold but this is next level.
Hi. I get episodes of excruciating foot / leg cramps. And yes, the residual pain can take a day or two to subside after a really bad attack.
Following the advice of a dancer friend I’ve learnt to stave off attacks (as I say they come in episodes) by wearing leg warmers - I keep a pair by my bed! At the first twinge, I try and get my legs and feet as warm as possible (even slap on a hot water bottle if I’ve got one handy) to stop them getting to that excruciating ‘locked’ phase.
And if that happens - or even just to stop it progressing - I use a ball or roller and roll it hard along my calves and shins. Any smallish, hard ball will do. And if no ball I use my thumbs and fist.
If I find I’m in a dodgy period with repeat attacks I just keep the leg warmers on (even on a cool day - or more likely evening - in summer). Cold legs or feet seem to be a trigger, or at least the trigger to take it to the worst level.
It’s also really important to stretch the calves regularly (I have a simple calf stretcher which I keep in the bathroom and stand on while I brush my teeth). If I’m lazy and forget to do it, I find I’m more prone to get cramp. Hope this helps.
I will definitely try the calf stretches and I have a roller (from physio) so great idea to use that also. So glad I have my husbands strong hands to break up the knots and locks….and not complain at 5 a.m.
I have the same,foot and leg cramps so servere I have pain mainly in the front of my legs for a few days after so I eat a banana a day and a drink of tonic water at night alleviated it now only get it occasionally
I have PV and take Hydroxycarbamide, blood pressure medication and aspirin.
Like you I do get horrible leg and foot cramps, often after a long period of standing up cooking and just as I get into bed and stretch tight calves.
If I remember to drink more water during the day the cramps don’t seem to happen as much.
My magnesium levels are ok but I do use a magnesium oil to massage my legs when the cramps happen. I’m not sure whether it’s the oil, the massage or the stretching that helps to relax the leg and ‘unstick’ the cramp!
I’m going to try some calf stretches during the day and see whether they help!
I’m ET jak2 positive and suffer from server cramp in my back, leg, feet, arms and hands. My haematologist is insistent this is not related to my blood conditioning and my GP thinks it is ? I am prescribed Quinine Sulfate which controls the cramps. However 2 weeks ago had a episode in my back and legs which locked and ended up in hospital.
This is on go for me and awaiting a nerve test and MRI.
after extensive research because of cramps but normal magnesium levels I came across some very bizarre suggestions on curing them. One night I was in so much pain and getting desperate so I tried two spoonfuls of pickle juice as per one suggestion! I was amazed and delighted to find the cramps eased in less than five minutes!!! Apparently mustard can do the same thing but I can’t bring myself to try that one. Pickle juice has worked over and over again for me
Apparently athletes have discovered this ‘cure’ for cramp and I can’t help but wonder how they discovered it. It doesn’t matter really but I always have a jar of pickled gherkins in the fridge for first aid. I understand that in the USA you can actually buy pickle shots! If it works, don’t knock it.
I hope you find relief somehow as unless you’ve experienced it it is hard to imagine how painful cramp can be
I really sympathise with you . I am in a different situation as I experienced terrible cramps a few weeks after having a SCT and I am taking a cocktail of drugs but I suspect the Cyclosporin has been the cause .
They were terrible and occurred mostly at night but I did have some during the day in my hands and in my groin sometimes when I went out for just a short walk .
I would say they lasted about 6 weeks , really got me down as I could not sleep which made me feel v tired . I would go to bed v tired and within 5 minutes of lying down I could feel the muscles in my legs starting to twitch . I knew I was in for another rough night . I found myself waking up every time I turned over in bed and had to be so careful when I moved my legs . I would wake up in agony , like I said the ones in my thighs were the worst as I needed to get up and walk around but could not bear to straighten my leg due to the pain .
One night I got into bed and I had cramp solidly for 2 hours . It just kept moving from one place to another in my body . I was at the end of my tether with it .
After talking to a friend of mine who is s senior dietician at s hospital in Phoenix , Arizona I started taking magnesium 400mg every day . She warned me that it would not be a quick fix and could take a few weeks before I would see the benefits of the extra magnesium .
I also made sure I drank 2-3 litres of water every day …… just water not water in tea or coffee as it takes longer to be digested and get into your system .
I drank tonic water although I know the amount of quinine is minimal . I just wanted to do everything I could think of to try and eradicate the cramp . I was desperate .
I went out for short walks as I felt I needed to do some exercise but if I did too much the cramps could be bad . I built up the distance over time . I tried to do some simple stretches but that gave me cramp.
I also spoke to my consultant who gave me some quinine 400mg tablets which I was reluctant to take partly because I had read somewhere on this site it wasn’t a great idea and also because I felt I was on enough tablets .
I got the quinine tablets though just in case I wanted / needed to take them . My MPN consultant said they were fine to take and I also spoke to my local pharmacist about taking them and he suggested I take them for a couple of weeks . He also told me they were fine to take . I trust both my consultant who is excellent and the pharmacist who is also excellent .
In the end I only took 2 or 3 of them when it was really bad , 1 at night on 3 separate occasions as my cramps started to improve by then and some nights I was cramp free .
I do think after about a 4 week period of taking the magnesium the benefits kicked in as my cramps started to slowly reduce in frequency .
I have now been ok for about 4-6 weeks and have been cramp free . It is such a relief .
I would definitely put it down to the extra magnesium and water intake . I am still taking the same medication as when I experienced the really bad cramps so nothing else has changed apart from the extra magnesium and water intake .
I remember my dietician friend saying it is just a phase and the cramps will stop . She was right . They have and it is such a relief . I hope you get some relief soon too .
I second the reply about pickle juice. I read about it being effective in the health section of the Washington Post. If I get leg or toe cramps at night I drink a Tablespoon of pickle juice and the cramps go away.
Hello Rosie, I feel for you with such unbearable cramps. I suffer similarly, my haem doesn’t attribute it to MPNs … I have found using triple magnesium (taken in this form aids absorption), along with a heated pad to the area. And as always keeping well hydrated. Hope this helps. 🙏
Leg cramps? Get your iron levels checked! Both times when I've had severe leg cramps for months, my iron level was on the subway taking the train out of town! Seriously low! Once I ha 2 iron infusions, it took about two weeks for the leg cramps to disappear. It took two years for my iron levels to again fall to "cramp' level. Again, two iron infusions (i can't take iron supplements; instant stomach pain!) and the cramps disappeared two days after the second infusion. Magnesium, pickle juice and etc did NOT make any difference on my leg cramps. They went from toes up into my lower back! Awful!
Hi I too suffer unbearable leg cramps every night in places even were I have no muscles. I will defo try the pickle juice. I also have the magnesium spray but don’t think this is of any help. I suffer with CNL (chronic neutrophilic leukaemia) which is a very one so don’t actually know anyone else who suffers this same condition. Good luck to you and hope you are able to sort it. Please let us know if you do find anything that helps. Brenda
Oh yes, I get the screaming leg pain. I also get back, hand, jaw and neck cramps. The hand problem may be nerve pain because I can get it to stop by moving my neck. My neck and lower back vertebrae are degenerated. I think the screaming leg pain is from a compressed nerve because leaning on my husband's chest as he leans backwards stops the pain immediately. (I think it opens up the gap between my compressed vertebrae. LOL, or maybe it is the magic touch of someone who loves me.)
When it comes to the legs and feet, it is hard sometimes to tell the difference between cramps and nerve pain, except the screaming level pain seems to be nerve pain. The leg cramps are more frequent when I don't drink enough water. I try to avoid them by drinking more water and taking an occassional magnesium pill. (I wonder if a hot Epsom salts bath could give more immediate relief.) Also, to increase potassium, which can also contribute to cramping, I eat an occassional banana. I also sometimes take a prescribed muscle relaxer. For back cramps, I lay on a heating pad. The heating pad can help feet too. I've found that cold feet cramp more easily so I sleep in socks year around. The jaw and neck cramps happen sometimes when I yawn. Those I just have to suffer through.
By the way, I have ET, am mildly JAK2 positive, and have been taking asprin and Hydroxyurea for 13 years.
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