Leg cramps

[Tingle20]

Hi it’s been awhile since I’ve been on here. I’ve been taking Hydrea for ET for a year now. My platelets are staying in the 500’s. Over the last couple of months my legs are hurting super bad. Aching all the time. I’m getting a lot of Charlie horses at night. I am standing at my job and on my feet for 6-8 hours a day. I’ve been doing this for 5 years so that shouldn’t be the cause. Just wondering has anyone else experienced this and could it be related to the medicine or my diagnosis?

[EPguy]

I've suffered leg cramps since childhood. Mostly went away later, but I got more when my MPN was starting to cook, before starting treatment. I think it is related to the disease more than the hydrea in my case. But I've just quit HU (starting Besremi) and will be posting on what changes.

Impressive all that standing, I've been unable to do that my whole life, have to keep moving or lean on something. Museums are hard if there's no wall to tilt on. Since my MPN it's even worse staying vertical and stationary.

[hunter5582]

Too little information to say what is going on. HU can cause peripheral neuropathy and edema. The MPN can cause bone pain and general issues with inflammation. Magnesium deficiency can cause significant muscle cramps, as I learned from personal experience. In my case the magnesium deficiency was related to the long-term use of Nexium. Mg deficiency has been noted with HU. Some recommend considering Mg supplementation when using HU.wa.kaiserpermanente.org/kba...

Suggest getting some basic nutrition testing done to be sure you understand what is going on. Would include magnesium and iron levels in the assessment. While i do use supplements myself, I would never suggest using them blindly. I am both Magnesium and Vit D deficient. My doses for both are informed by blood tests to ensure I am taking the right dose.

That is not to say that this is what is going on, but it is an easy thing to check. Recurrent pain is always your body telling you to pay attention to something. It may well be something that is very easy to address. My muscle cramps stopped right away when I started the Mg supplements. Hopefully you will find an equally easy solution.

[Tingle20 in reply to hunter5582]

Thank your for your response. Should I just ask my hematologist to do the extra testing when I go for my visit in a few weeks

[SoledadBarcelona in reply to Tingle20]

Magnesium in serum is easy to take but the information is low because we need a test in a cell level. I think we need Mg like mineral to the body but Threonato no another kind. Think about there are 12 kind of magnesium for diferent things. Magnesium Threonato is to pain. It works very good for me with Vitamine D and Omega 3. I try it to my leg pain together Scenar massage and manual one with lavanda plus jojoba organic esential oil which I mix to massage at night.

[hunter5582]

If that is your next appointment then that is where I would ask. Since the leg cramps are potentially relevant to your MPN care it should not be a big deal to get the Magnesium testing done. I consult with an Integrative medicine Specialist, where nutritional testing is standard care.

hope you find relief soon.

[Whitehair51]

If you aren't getting enough calcium, that could contribute. Also, are you drinking enough liquid?

[Tingle20 in reply to Whitehair51]

I only drink water. Not sure if I drink enough. I’ don’t know about calcium

[Whitehair51 in reply to Tingle20]

You should be drinking 8 cups a day. If you are premenopausal you should be consuming 1000 mg of calcium per day, if past menopause 1200 mg.

[Trocken in reply to Whitehair51]

On hydroxy you need to be drinking more than the recommended daily amount. It may help to make sure your drinking frequently throughout the day and then make sure you have a pint of water before bed to see if it eases the cramps through the night! Xx

[azaelea]

Hi, I. Have been experiencing leg cramps in right leg , only when walking. It comes on after about 500 yards and gets worse till I have to stop. My Haematologist referred me to Vascular clinic and on seeing Consultant last week it appears I have a narrowing in the artery near my knee which restricts the blood flow to lower leg. I am on Hydroxy 500 mg daily. I also get leg cramps when sleeping but fortunately not too much. I don’t know if Hydroxy has anything to do with this but I certainly did not suffer with this before being on Hydroxy. It is called “Claudication” . I’m not on any vitamin supplements. This might be unrelated to the cramps you are suffering but I also wonder if Hydroxy could be to blame. I hope you get some answers when you see your Haemo. I have ET JAK 2 + and been on Hydroxy 3 years now. Regards Fran

[beetle]

It appeared to me that any time the subject of cramps came up on a forum that all the cuckoos and crazies would come out of the woodwork offering all sorts of weird and wonderful cures for the problemI was awakened the other night with cramp in both legs and in agony I hobbled to the fridge and downed a spoonful of vinegar juice from a pickle jar! I kid you not - the cramp in both legs had gone within 5-10 minutes and there was no residual pain the next day. I haven’t dared try the spoonful of mustard that someone else swore by! (I’m hoping that is American yellow mustard rather than Coleman’s best)

I take apple cider vinegar as recommended by a urologist to help ward off urinary tract infections and I’ve noticed that I’m more likely to get cramp if I’ve not taken it for a day or so

I will ask about Magnesium blood test when I talk to my consultant this week. I hope you manage to get your cramps sorted and let us know what works for you

Best wishes, Jan

[lindabomba]

Hi, No leg cramps I use to get cramps at night since I was in my 20 and was a lack of potassium I started taking 900 mg a day and that helped. In 2018 I started taking CBD oil and I stopped getting them and stopped taking potassium.

[nightshadow]

My leg cramps disappeared after going on HU. I used to use a topical spray called Theraworx Relief and it helped quite a bit. It has magnesium in it and I have no idea why magnesium in a spray would be remotely useful, but it did help me.

[Minu68 in reply to nightshadow]

I've been told by my pharmacist that magnesium is absorbed quickly through the skin, and is much more effective that way. It also means it can be applied topically where it is hurting

[nightshadow in reply to Minu68]

Thanks, now it makes sense.

[Auggie17]

I have ET + Jak2 and I have too been on Hydroxyurea for 1 yr. I have bad varicose veins so have suffered with achy legs for over 30 years. I now have issues standing as well and feeling like my legs are giving out. My feet and hands are numb at various degrees and times. My hematologist has said nothing when I ask, so I don’t know why it’s getting worse by either ET or hydroxyurea. I am seeing a MPN specialist next month and hope to have it addressed. I like everyone’s input on whether vitamin deficiency could be the cause. Good luck in getting some answers and let us know when you do.

[Tingle20]

I called my hematologist today and they want to get me in on Wednesday to do a CBC and chemistry check. I think that’s what she called it. To check all my levels of potassium, magnesium, and such. Thanks to everyone for suggesting this. I am getting it all checked and will post an update