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Hi All,

I've been looking over this forum for a while now and thought it's now time to join in. There is some great advice and a wealth of knowledge on here so thanks to all.

Just a brief background about me.

I was diagnosed with CML in 2017 after feeling tired and having a quick stabbing pain in my spleen. The service from my GP and Durham University Hospital was amazing ... GP appointment at 9am - blood test at 9:30am - call from GP at 11:30am - Hospital appointment at 1:30pm - diagnosed and started Imatinib - at 4pm all done in one day yes

After being on Imatinib for 4 years I have now just changed to Nilotonib around 8 weeks ago. The main reason for the change was cramps! These became apparent around 6 months in but they were not too bad at first but as time and years went by they became intolerable. Durning the last six months I would get server cramps around 40-50 times a day, it seemed that every time I moved I had cramp. I would get cramps in my calfs, thighs and my lateral muscles in my back. The worst was in the back of my neck "nape" as it seemed impossible to even attempt to stretch it out. During one vomiting event I also had cramp in my tongue which caused it to contort and retract into my throat causing me to choke whilst still vomiting! I tried everything from 6 bananas a day, 6 litres of tonic water and even managed to get the GP to prescribe quinine tablets but nothing worked. In the end I told the hospital I would rather have the CML than the cramps.

Other issues that became apparent with the imatinib was my phosphate and vitamin D hit rock bottom that has now led to Peripheral neuropathy in my lower right leg. Im glad to say my Phosphate and Vitamin D levels are back up now. 

Anyway after 8 weeks of Nilotonib all seems well. Ive had my heart checked and I'm now on blood pressure tablets due to the associated risk from these tablets. I'm pleased to say that my cramps have almost completely gone with me now only having around 2-3 per week and these are very short lasting and very easy to stretch out so, finger crossed.

I've also been reading on here about the Vitamin D supplements so have just ordered some of those via one of the links provided.

Thanks to all for the info already on here, and I look forward reading more.

Andrew

 

Hi Andrew,

When I was first diagnosed, I started on Imatinib as you did and shortly afterwards developed the dreaded cramping. But I learned about TKi's (Imatinib mostly) can cause a severe depletion in magnesium. This does not show up in blood tests because magnesium is absolutely vital for blood homeostasis - so the magnesium gets robbed out of muscles to keep blood levels up and this causes the cramping. Most people - including non-CML persons have magnesium deficiency and don't know it. Taking Imatinib makes it worse.

Solution: Take magnesium supplements.

My cramping disappeared overnight. And I have continued to take magnesium even though I no longer take a TKI. (treatment free remission or TFR).

I take 200 mg magnesium taurate in the morning and 200 mg just before bedtime. Magnesium is a natural muscle relaxer and helps you sleep better.

There are other forms of magnesium such as 'oxide', and 'citrate'. Citrate is o.k. - Oxide is useless as it is poorly absorbed (which is why it is a good laxative). Taurate is vital for heart function which is why I take magnesium in this form. 400 mg is key per day. Magnesium taurate can help stabilize heart rhythm issues.

 

Hi Scuba,

Cool tag, I spent hundreds of hours underwater ;-)

The info you mention regarding the magnesium really makes sense. I checked my medical records and my Magnesium was last tested in April 2021 with a Serum Magnesium reading of 0.84 mmol/L and was stated 'Normal' however after following the link you provided this may not actually be the true reading.
Its amazing how many times I complained about the cramps but was never actually offered a solution, this may have been it all along?
Looking at the link you provided it also mentions Fibromyalgia. My wife suffers from this and is alway fatigued again a possible lack of Magnesium. I also suffer badly from constipation and myself and my wife struggle to sleep Magnesium can also help with this according to the link.

Im going to give them a try and see what happens.

Thank you so much for the advice

Andrew

 

Hi Scuba and Andrew

i was very interested to read about magnesium supplements.

I was also diagnosed in 2017 and have been on Bosutinib for over three years and I feel as though in the last few months I have been getting a few heart palpitations and slight feelings of anxiety which I believe have been brought on by the Bosutinib. 
 

I would definitely like to try a magnesium supplement, Do you think Magnesium Taurate in particular would be the best and how much?  I already take D3 and K2 after reading lots of informative and helpful advice on here. Would it be safe to take the magnesium at the same time as D3 and K2?

Thanks in advance 

Diane

Hi Diane,

Magnesium can be taken any time with or without food although I tend to take it first thing in the morning and just before retiring for the night (200 mg morning/ 200 mg night).

I take my vitamin D3 & K2 with food that has fat in it for best absorption.