Polycythemia Vera Leg Cramps

[Paraic2021]

I have PV for last 2 years and on Daily Multiple Hydroxycarbamide. Last 6 weeks get Leg Cramps in bed every night. Amy advice please as next Consultant Appt October.

[hunter5582]

I have not heard of leg cramps being directly associated with PV or hydroxycarbamide; however, I have experienced them myself. Amongst the causes for leg cramps, are iron deficiency and magnesium deficiency. My leg cramps were caused by magnesium deficiency. A Mg supplement corrected the problem. it is worth noting that PV can cause iron deficiency, Suggest getting a nutritional evaluation to help sort out what is going on.

[Paraic2021 in reply to hunter5582]

Thank you Hunter

[PhysAssist in reply to Paraic2021]

I often find that if I'm not drinking a significant amount of water, or at least fluids in general, I get a lot of night-time leg cramps.

But I also take a magnesium supplement on general principles which does seem to help provide an additional buffer to getting them.

I also used to have what SWMBO called "Restless Body Syndrome" that also seemed to generate cramps.

She said that she couldn't understand why I didn't constantly wake myself up with my muscles jumping, twitching and generally moving about.

It all resolved almost completely [except for the apparently hydration-related cramping] when/after I was diagnosed with sleep apnea and started using my prescribed C-PAP religiously, even though no one in my care team thought they could be related.

Best,

PA

[Paraic2021 in reply to PhysAssist]

Thank you

[Nickthedevil]

I have ET and suffered with terrible leg cramps. I had to take quinine sulphate daily. Then I swapped to a magnesium supplement which worked for me.

Karen

[Paraic2021 in reply to Nickthedevil]

Thank you Karen

[PhysAssist in reply to Nickthedevil]

Just a caveat- be careful with quinine, because it can cause cardiac arrhythmias in some sensitive patients.

[Paraic2021 in reply to PhysAssist]

Thank you

[Jcd22]

I have PV, diagnosed in 2021 following a routine blood test before knee replacement surgery.

I’m on aspirin and Hydroxycarbamide. I seem to be becoming less tolerant of Hydroxycarbamide now with very painful recurrent mouth ulcers, a feeling of deflation/depression and now leg and foot cramps.

My MPN specialist has lowered the dose and we’re going to talk again in the autumn about a change in medication. I wonder whether that may help with the leg and foot cramps as well?

I have some magnesium oil which does seem to help a bit!

[Paraic2021 in reply to Jcd22]

Than you JCD

[strangeland in reply to Jcd22]

My initial dosage of Hydroxy at 1,000 mg daily caused depression and yours is one of the few other mentions of that side effect I've seen. Lowering the dose to 500 mg daily made all the difference, and I continue to take it (going on 6 years) because I have no other side effects and my blood numbers are at good levels and stable. Hope the lower dosage resolves your issues as well.

[Paraic2021 in reply to strangeland]

Thank you

[Jcd22 in reply to strangeland]

Thank you for your comments. Like you I don’t really read about Hydroxycarbamide and depression (something I couldn’t put a name to, never suffering from it in the past.) I think that’s why I called it ‘deflation’. I certainly feel better on the days I take the lower dose.

[Paraic2021 in reply to Jcd22]

Thank you

[lhammy66]

I have leg cramps every night - it’s restless leg syndrome. Avoid quinine at all costs as this can be a real problem for some and is frowned upon by RLS specialists. It’s probably worth being checked out by a sleep clinic. There are a whole barrage of drugs to help with this although many longer term increase the problem so specialist help is essential. I am now on Clonazipam - not ideal but at a low dose does help considerably.

[Paraic2021 in reply to lhammy66]

Thank you

[lhammy66]

I should add that there is an RLS forum here also which might help knowledge and thinking about whether this is what you may be experiencing

[Paraic2021 in reply to lhammy66]

Thank you

[Tortina]

Hello

I am 74 days post a SCT and have been experiencing terrible cramps at night for 7/10 days . Did not Dare move my legs in bed or it would come on . It was disrupting my sleep terribly .

Yesterday I had had enough and decided to take a magnesium supplement I had in the house plus a relation bought me some almonds and pumpkin seeds both of which are high in magnesium. I ate a small portion of both . I also drank a large glass of tonic water which contains quinine .

Last night no cramps ! Obviously it’s only one night but my legs felt much more relaxed / less tense yesterday evening .

A friend of mine is a registered dietician and she told me to take 400 mg of magnesium .a day . She mentioned that some people do say tonic water with quinine works according to some patients . I don’t know about negative affects of quinine but will definitely investigate .

Another friend of mine does holistic massage and has done for 40 years . He recommended a bath / good soak with Epsom salts in it .

He also told me that several sports people / cyclists who go to see him use a magnesium spray to help with cramp as it’s more easily absorbed into the legs and can be better than oral supplements . That certainly helped them .

When I go and see my consultant next week I am going to discuss all the above with him to make sure that he approves .

Of course everyone is different and has different conditions on this website so it’s always best to talk to your consultant and make sure whatever you take is ok .

I was at my wits end yesterday after not sleeping for a week so decided to take some action and risk that everything I am doing is ok.

I really sympathise with anyone suffering with bad cramp at night . It’s awful .

I hope you feel better soon .

H

[Paraic2021 in reply to Tortina]

Thanks so much

[PhysAssist in reply to Tortina]

To the best of my ability to research this topic, I have found no scientifically valid evidence for any proven or plausible benefit to using topical magnesium in any form, most likely because the barrier effect of the intact skin keeps it from being absorbed.

If there is a benefit from bathing in water with Epsom salts, it may more likely be from the small amount of water being absorbed, as well as the warmth, As for magnesium oil, mayhap massaging it into the skin helps because of the massage, and not the magnesium.

On the other hand, we have had some good results using Voltaren [Diclofenac] 1% gel at the site of the cramping.- it is especially good in relieving or preventing the next-day soreness that can occur after the cramping episode.

[Paraic2021 in reply to PhysAssist]

Seeing Consultant next month and will discuss thank you

[Tortina]

I should add I don’t believe quinine levels in tonic water are high . I certainly would not drink a lot of it in a day . Like I say I drank one large glass .

I am also going to start doing stretching exercises which should help. I tried earlier on this week but it was impossible to carry out as it just gave me bad cramp!

I do think it’s very important to discuss everything with your specialist consultant .

H

[Paraic2021 in reply to Tortina]

Thank you Tortina noted I also do exercise daily

[PhysAssist in reply to Tortina]

Despite my caution about quinine posted above, I do not think any medical professional would have any qualms about you drinking tonic water. The amount you would have to drink to cause harm would be ridiculous:

In the United States, the FDA limits the contents of quinine in Tonic Water to 83 mg/L, as the therapeutic effect ranges from 500 to 1,000 mg.

Source: ncbi.nlm.nih.gov/pmc/articl....

The site also provides an excellent overview of quinine and its ues and negatives.

Also:

peoplespharmacy.com/article...

[MCW22]

When you get cramp in the legs. Stand with ALL your weight on the affected leg. Hey presto, cramp gone in seconds.

Carol

[Paraic2021 in reply to MCW22]

Thanks Carol if only !!!

[Tortina in reply to MCW22]

Unfortunately that doesn’t work for me . Some nights. Have struggled to even straighten and stand on the bad leg .

[GarciaB]

I found that consuming BodyArmor lyte, a coconut water based electrolyte drink, helped a lot. The potassium and magnesium boosted my levels enough to minimize my cramps

[Paraic2021 in reply to GarciaB]

Thank you will ask Cosulatant next month as don't want interference with other meds

[william-Indo]

Common cause of leg cramp is deficiency of iron and Magnesium.

You may try to take it for a while, if the simptom persist, then go to seek doctor.

Cheers

[Paraic2021 in reply to william-Indo]

Thank you

[Tortina in reply to william-Indo]

That’s what I’ve been told . I am taking cyclosporine after my SCT and apparently that can affect magnesium levels .

H

[BuckskinAsia]

Be sure to stay well hydrated throughout the day, adding electrolytes has helped me & I also take 400 mg of magnesium

[Paraic2021 in reply to BuckskinAsia]

Thank you