Restless Legs / Body

[PFR1937]

Hi all. I am posting this for my mother aged 83 who was diagnosed with Polycythemia Vera around 10 years ago after a heart valve repair operation. She takes Hydroxycarbamide (500mg - 10 tablets / week) and Rivaroxaban (1x10mg tablet each day) for the condition. Her Haematologist says her spleen is enlarged to its maximum. She has often suffered from tiredness and shortness of breath and the occasional dizzy spells but has more recently experienced more visual disturbances - often coloured lights and sometimes partially excluding areas of her vision. We know she has a blood clot behind one eye. More recently she has suffered cystitis and a soreness of the mouth and tongue inhibiting her speech slightly and what I would call a restless leg type syndrome whereby she finds it difficult to get comfortable and stay still. She has had a recent blood test and this didn't raise any concerns from her haematologist who referred her back to her GP for the sore mouth and cystitis. I find the restless leg / body thing unusual and wondered if anyone else had experienced this? I presume the other symptoms are not unusual but do correct me if I am wrong?

[Aime]

Hi, I’ve got idiopathic erythrocytosis which means too many red blood cells, cause unknown but I was initially diagnosed with Polycythaemia vera.

I suffer from the eye disturbances you mention and also the restless legs, arms, etc. The advice I would give is to get any new symptoms checked out because we are unique in the conditions we have and the treatment/meds we get so best not to compare.

In my case, the optician told me not to worry as I’m getting ocular migraines which explain the visual disturbances. My gp doesn’t think the restless legs are anything to worry about and I’m trying to put up with them as the meds I would get are used for Parkinson’s patient. I’m keeping an eye on this symptom as my brother has Parkinson’s.

But please encourage your mum to get checked out. Hope this has helped you. You will find more info on the MPN voice website. Kindest regards Aime 😻

[PFR1937 in reply to Aime]

Many thanks Aime . I will pass this on to my mother.

[mhos61]

Hi there.

Some of those symptoms are clearly associated with PV. Additionally, your Mum has an enlarged spleen which will presumably be contributing to her breathlessness and fatigue.

Has your Mum been offered Ruxolitinib as a treatment for her PV? Some forum members on this treatment have had a significant decrease in splenomegaly, resulting in a reduction in symptom burden, and hence a better quality of life.

Just something to note. Has your Mum been tested for b12/ folate deficiency in her recent blood test? Some of those symptoms you describe could be related to this deficiency too?

Good luck

[PFR1937 in reply to mhos61]

Thanks very much mhos. Yes I (as you do) googled her symptoms and suggested she mention a possible vitamin B12 deficiency as many of the symptoms fitted her own. She did get it checked out but the results were normal. We will suggest the Ruxolitinib to her haematologist if the symptoms don't resolve.

[clubdino]

Sorry to hear about your mom. I once suffered from restless legs and I tried a magnesium cream on my legs and it helped. Restless legs is quite an annoying feeling.

[PFR1937 in reply to clubdino]

Many thanks clubdino.

[hunter5582]

I will add a couple of thoughts to the others. The soreness in the mouth is a common side effect of hydroxycarbamide. Stomatitis is a well known side effect and is worth looking into.

Splenomegaly is one of the common symptoms of PV. If the HU is not controlling this, then there are other medication options that may be more effective (e.g. ruxolitinib, PEGylated Interferon). Do note that these other options are much more expensive and some healthcare systems make it more difficult for older patients to access these meds.

Restless legs can have multiple causes. Magnesium deficiency can be one of the causes. There is a simple blood test for this issue. I am aware of the Mg deficiency issue as I also experience it and take Mg supplements to manage it.

Ocular migraines can take two forms. Visual migraines are based in the brain. Retinal migraines are based in the eyes. You can get scintillation (lights) and scotoma (obscured vision) with both. The symptoms do present differently with retinal migraines usually only affecting one eye. This does need appropriate follow-up. Note: this is another thing I have experience with. It is important to properly assess this to deal with it appropriately.

I hope your Mom is being seen by a MPN Specialist. Most hematologists do not have the KSAs to provide optimal treatment, especially for more complex cases. Just in case ypu have never seen it, here is a list. mpnforum.com/list-hem./ .

All the best

[PFR1937 in reply to hunter5582]

Thanks for your detailed reply hunter, it is much appreciated. I think you are right about the need for a second opinion from an MPN specialist. I will put it to my mother as we are not far from Oxford in the UK where there is a MPN specialist on your list - Dr Lynn Quek. It is reassuring to hear that the visual migraines and stomatitis are due to the PV and the options for the treatment of Splenomegaly. We will pursue the magnesium deficiency test and let you know how we get on.

[Hidden]

Hi restless legs is a condition found across many age groups apparently. For those of us struggling with the issues related to MPN makes things even harder. For me a leg massage at the time of a magnesium sleep spray mixed with with a good quality organic body oil is most helpful also compression knee high socks are helpful untill restless legs ease then socks off.Good luck

[PFR1937 in reply to Hidden]

Thanks Adiewon, I will pass this on too.