Restless legs, iron and blood cancer

[lhammy66]

Not only do I have restless leg syndrome but two years ago was diagnosed with a rare blood cancer where a mutation causes me to produce dangerous levels of blood cells. As a consequence of the treatment (which includes low dose chemotherapy pills daily) I have to run anaemic as any iron I get I will turn into blood cells. Consequently my ferritin levels remain low and the RLS gets worse. I have augmented on every drug prescribed (although I had six years being ok on Ropinirole before RLS escalated) or drugs had nasty side effects so am wondering whether people have found any non-iron supplement answers?

[Hidden]

Hello. I can see you're in a dilemma!

Could you tell me the name of your blood disorder?

The only one I know is called Polycythemia vera. (PV).

PV can either be primary (genetic) or secondary, due to some other condition.

In primary PV ferritin will be low, however in secondary ferritin can be "normal".

If it is PV you have, then it appears it is primary. NO curative treatment!

Knowing little about it I can only guess at a few things.

If you do have PV then I don't see that taking iron will make you produce more Red Blood Cells (RBCs) but it may mean that as you're producing too many RBCs anyway, whatever iron you take will be "stolen" by the RBCs.

Hence it will be difficult to raise ferritin levels by oral iron supplementation. An IV iron infusion may be dangerous.

You can get "ferritin" supplements I believe, but even these are just another way of taking iron. Your PV would even "steal" iron taken as ferritin.

The aim of raising ferritin levels is that it has been found that higher ferritin levels are associated with less brain iron deficiency (BID). BID is the main cause of RLS.

I'm not expert on this but it seems the only way you can get more iron into your brain is to inject it directly. This is called an "intrathecal" infusion. However neither is this ever going to happen and even if anybody were willing to try it, it would probably be lethal anyway.

As far as I can see, you're snookered.

Yes, there are other oral supplements that can help with RLS, but as they contain no iron they cannot correct the BID.

The supplements definitely known to help with RLS are vitamin D and vitamin B12/folate.

These will be of no help if you don't have a deficiency in them. Most people are vit D deficient and there would be no harm in taking this anyway.

Vitamin B12 is involved in normal nerve function, hence its usefulness for RLS if it's lacking. However, it may not be safe for somebody with PV to take B12. This is because it is also involved in RBC production!

You would need a blood test for B12 levels and if low need to consult your doctor Do not take B12 without asking first.

There are other supplements which others might suggest and it may be a matter of trial and error trying each in turn and seeing if it works for you.

Please be sensible and be aware that some of the suggestions may actually be risky or ineffective.

Mucuna pruriens is a supplement that often comes up, it is known that it can increase dopamine levels. This can help with RLS. However it runs the risk of rasing dopamine too high and hence runs the risk of augmentation. If you've already suffered augmentation then. I'd advise against mucuna pruriens.

Kratom is sometimes suggested, this is a supplement that has opioid like properties. This can make it effective for RLS, but risky.

Be wary of suggestions that "CBD oil" can help. There is, in fact, no such thing as CBD oil. It is a label used by manufacturers of a wide variety of products that claim to have "cannabinoids" in them. I say claim because last year a survey was done of 9 products and one of them had no cannabinoids in it whatsoever.

CBD oils are expensive.

Of those that DO have CBDs in them, there are many CBDs and some products may not have them all, and they may have them in different amounts. It is claimed that "full spectrum" CBD oil is better because it has ALL the CBDs.

It might be better for some things. However it seems to be the case that to be effective for RLS a "CBD oil" also has to contain a significant amount of THC. This is the psychoactive component of cannabis.

These oils aren't legally obtainable in the UK.

You can get a prescription for medicinal cannabis through the project twenty21 study. This could be of benefit in your case.

However be aware that the project is not NHS. You have to pay for at least two consultations and pay for the cannabis. It may be worth the expense, I don't know.

drugscience.org.uk/project-...

Aggravating factors

As well as thinking about what might help make your RLS better, it's a good idea to think about what might be making it worse. You can find more information about this in this forum.

Medications

I note you say " I have augmented on every drug prescribed". However, you don't mention exactly what you have been prescribed. You only mention ropinirole i.e. a dopamine agonist (DA).

If all the drugs you've been prescribed were DAs then it's no surprise they all caused augmentation.

In which case it might be a good idea to try a drug that is less likely to cause augmentation,that is pregabalin or gabapentin. These are now the recommended first treatment for RLS.

pubmed.ncbi.nlm.nih.gov/274...

I hope this is helpful information.

[Jelbea in reply to Hidden]

Dear Manerva - Interested to see your info on the B12. It is something that has been bothering me but the first haematologist definitely said it was OK. She transferred me to a colleague who holds his clinic in the town where I live and I shall ask him on Friday what I should do. I was told to eat nothing fortified like breakfast cereals and keep off red meat which I only ate very occasionally anyhow.

[Hidden in reply to Jelbea]

I don't know if when you were advised to avoid fortified foods and red meat (beef) you were told why. I always find it helps people comply with advice if they are given a reason for it.

One reason for avoiding these foods is that they are high in iron. Another reason MAY be that they are also high in B12.

You need to know the reason! If it's both, then there are foods rich in iron, that aren't necessarily high in B12 and vice versa. You need to avoid all foods high in iron AND all foods high in B12.

I have now read that B12 levels are above normal in PV

I do know that RLS can be improved with B12 if, and only if, there is a deficiency.

I have read that with PV, B12 levels are raised, so you won't have a deficiency.

In which case it seems that definitely you should not take any extra B12.

Whether you should also avoid foods high in B12 you will have to ask the doctor.

[lhammy66 in reply to Hidden]

When I say none helped I mean I augmented - I also tried the patch which my skin reacted to badly.

[lhammy66 in reply to Hidden]

Thank you so much for the rounded advice. I have B12 with specialists knowledge as I don’t produce sufficient dues to stomach surgery. I am PV Jak2 positive and so yes the ‘robbing’ to make red blood cells is a really helpful way to think about what’s happening. On the augmentation it took a range of DAs and pregbalin and gabapentin. None helped but controversially I have a very minimum dose of amytriptaline. I found the lowest dose plus paracetamol helps a bit - but if I increase the dose things get worse fast. It’s not ideal and doesn’t always work. One suggestion has been magnesium supplementation which I’ll ask the MPN consultant about - I know that my ferritin levels are always dropping and that if over 75 I feel much better leg wise but levels are below 40 these days. The consultant had to do a venesection to reduce my haematocrit levels but took a minimum amount to protect what’s left of my iron as much as possible. I’ve also been started of pegylated interferon to see if that helps my blood counts. As you say I think to some degree I’m up the creek without a paddle!

[Hidden in reply to lhammy66]

Hi and thanks for the further information.

Whether you have B12 or not is really up to medical advice. My only comment is that if you're unable to absorb B12 because of stomach surgery then there's probably little point in taking oral B12. If the medics say B12 is a problem, then perhaps you need injections. Follow their advice.

If you've tried all first line treatments for RLS i.e. DAs and gabapentinoids, then there are second line treatments.

Again it's up to the medics to provide you with prescriptions if they think it appropriate.

I can say that "targinact", ( oxycodone/naloxone) is licensed in the UK for RLS. Oxycodone is an opioid.

Apart from that, I do know that some people are prescribed low dose methadone for RLS and more recently low dose buprenorphine (temgesic). Both opioids.

I hope you get some success with the interferon.

[lhammy66 in reply to Hidden]

Thank you for this additional advice which I will discuss with the haemotologist. Yes my b12 is the monthly injections and all the medics know about it

[Hidden in reply to lhammy66]

That's great, just checking.

[Jelbea]

Hello Hammy - You and I appear to be in the same boat. I was diagnosed in May with essential thrombocytosis/polycythaemia vera. I take 500 mg. hydroxycarbamide daily with double dose on Saturday and Sunday. I am due to see my haematologist on Friday. I have not seen him for almost six weeks so I am hoping for an improvement but very anxious. Apparently I have had raised platelets for three or four years which my GP knew about but did nothing. He allowed me to have four blood clots - a large one in my leg two years ago, one in my lung 18 months ago and one in each lung last August. Only then did he suggest sending me to a haematologist. He said that at that stage it was very mild and could be treated easily but guess what - he forgot to send in a request for an appointment and by May of this year when I was diagnosed I had to go straight onto the oral chemotherapy. I note what Manerva says about vitamin B12 and I intend to ask on Friday about this. When I was first diagnosed in May the haematologist asked what vitamins I took and I said B12 and D3 and she said this was OK. However, I have since read to be careful about the B12. I had a pint of blood withdrawn in June and when seen early July blood cell levels were dropping although slowly (that is why I am having double dose at weekends.

Unfortunately I am suffering severe depression and anxiety brought on by the same GP making a mistake when changing me from oxycodone to buprenorphine patches. His mistake brought on severe withdrawal symptoms and I have not been able to get any antidepressant help because I am taking blood thinners because of the clots. The haematologist is hoping to be able to get the blood cells levelled off so that I can some off the blood thinner and on to aspirin.

At present I am on the buprenorphine patches for low back pain and severe restless legs. It is still working OK but recently I have had one or two breakthroughs of RLS and your post has made me wonder why.

I am not much help to you but I do feel for your troubles. I agree that it is often difficult to know what symptoms are being caused by the affliction and what by the chemo. I have found it difficult to get much advice other than being "jollied along". Do get in touch if I can help at all and I will be thinking about you so much and hoping you get help.

[lhammy66 in reply to Jelbea]

Thank you so much and I am so sorry to hear that your GP was so slow off the mark. They just seem not to recognise this condition and some are less ‘investigative’ than others it seems. In terms of B12 I am taking this because of previous stomach surgery and the consultants are aware and happy with this so I go with their advice on this. I was up to 1.5 grams of hydroxy but had to cut this back as I felt dreadful. I’m now on 1 gram Monday to Friday and a gram and a half at weekends. The complication is that it’s difficult to know where the condition ends and the medication begins symptom wise. It seems at each hike it takes 2 or 3 months for symptoms to settle. However for me I am now trying Pegalated interferon to compliment my current therapy and I will be really interested to see how that plays out. Watch this space. Lots of good wishes to you.

[Jelbea in reply to lhammy66]

Dear Hammy - Thank you so much for your responses. I started with ET and my diagnosis now is ET/PV Jak2+. If I had received treatment earlier it probably would have delayed the start of the PV. This is why I am so annoyed that my GP "forgot" to request an appointment for me. At that stage it was mild but nine months on and after severe reaction to Astra-Zeneca first vaccine things had become much more severe.I am sorry to hear of all the problems you are having with the treatment. As you say it is hard to know if the symptoms are being caused by the affliction or the treatment. Hydroxy makes me a bit nauseated but I can manage at present. I suffer severe exhaustion, making it hard to get anything accomplished.

My depression and anxiety started last July after the mess made by my GP in the changeover of opioid medication. Actually I am able to deal better with the blood cancer diagnosis as I feel the team looking after me are dedicated and very knowledgeable. If I can be taken off the blood thinners once the blood cell levels are corrected I might be able to get some help for the depression. Fingers crossed! I also have injections into my eyes for macular degeneration every few weeks and with the blood thinners there is a risk of bleeding each time I get the injections which could lead to complete sight loss. I have been really lucky so far.

I do hope the new treatment will work out really well for you. You have been through the mill.

I met my new GP for the first time this morning and she was really helpful and concerned. She was checking my skin as I have had several actinic keratoses on my face dealt with in the past and have three more at present, and as you know our treatment can put you in line for skin cancer. She was very reassuring and has given me cream to apply for several months which apparently cures the spots.

I will stay in touch to hear how you are progressing and will be thinking of you each day.

[lhammy66 in reply to Jelbea]

Thank you I really appreciate that and I'm so glad the new GP is taking you seriously. It sounds as if you too have a lot on your plate. Of course the tiredness doesn't help with feelings of depression etc. I was ok at first but got worried about my bloods continuing to climb (with dips along the way). I'm feeling more hopeful with new treatment which may help control the condition - after all that's the biggest threat rather than the treatments. The rye issues sound nasty. I've had several eye ops and recently had cataracts done which have now scarred so my vision has blurred again. However a few months to a hospital check and then a two second laser zap and I'll be fine. The appointment has taken forever but the treatment is really quick. Let me know how things progress with you.

[lhammy66 in reply to Jelbea]

Just to note Jelba ET can often be a precursor to PV so you are likely to be one or the other maybe having progressed from ET to PV? My diagnosis was PV Jak2+. The MPN forum is really helpful for this condition if you are not already on it. Feel free to message me anytime.

[lhammy66 in reply to Jelbea]

On a different note I hear what you are saying about depression. I think the diagnosis of an MPN is very difficult in itself. I find each time my news and treatment changes I feel low for a while whilst I process and come to terms with it. Most people stabilise fairly quickly. Unfortunately I am two years along the journey and haven’t stabilised yet. However the treatments once in the right balance can help a lot and keep us going for a good while. Hopefully your haematologist will help reassure you and get you settled. The specialist nurses are great in terms of someone to raise worries or concerns with. If you get the right team there then that helps a lot and the GP becomes less significant. Might also be worth seeing another GP in future.

[Hidden]

I hope you've read my reply to Jelbea, you should NOT take a B12 supplement.

[Jelbea in reply to Hidden]

Thanks Manerva. Have just got your post. I will not take any more. I was a bit suspicious of what the first haematologist said and obviously was right to be. Thanks again, Jelbea

[Hidden]

Hi, that is a huge dilemma for you and I really feel for you.There are several people on this site who have lots of knowledge about RLS and its treatment.

None though can possibly be qualified to comment in any way about anything related to your blood condition. It is a very specialised field. I am thinking you will be under the care of an expert haematologjst.

Please follow only your specialised advice as regards your blood condition.

My husband was a haematologist. He and his colleagues were very dedicated.

There is a huge amount of frustration about the lack of knowledge & help amongst relevant Drs as regards RLS. That is not the case for haematology.

I am really sorry to hear you have such a tricky situation. You are likely to be able to rest assured though that the care you receive for it will be very good and the advice you receive will be wise and appropriate and the safest possible in your situation. No one here should question or undermine it.

It is so very hard when one condition interferes with another and I do feel for you.

I wish you all the very best.

[lhammy66 in reply to Hidden]

Thanks very much. The haematologists are great but of course not RLS experts but can advise if a treatment would cause issues for the blood condition. I think there is not going to be an easy answer. I appreciate your good wishes.

[Hidden in reply to lhammy66]

Your RLS might not be anything to do with your iron stores. Not all RLS is it seems. Opiates especially buprenorphinebseem to be a good remedy these days, though I haven’t had the courage to try. Is there a chance that your chemo might cause RLS? Worth asking & if there is an alternative - or any other recent treatments? Some commonly taken tabs such as antihistamines, anti acid/heartburn preps eg omeprazole or some antidepressants can cause such problems. I hope you find something reversible

[lhammy66 in reply to Hidden]

Thanks for these suggestions. My RLS pre-dates the blood cancer by some years and also taking things like lansoprazole. My sleep apnoea specialist diagnosed RLS after a sleep study but he gave up on me as his drug recommendations didn't work and he didn't know what to do so left me to get on with it which was pretty awful. I'm trying to get on to an appropriate specialist via the GP. Hopefully I can get some help that works soon.

[Hidden in reply to lhammy66]

It’s very frustrating when no one knows what to do with you and you are abandoned.I too have had RLS for some time & it runs in the family. But mine is worse than the others have as I then developed neuropathy.

One of the things about RLS is that it often progresses over time but also though you have the tendency to have it, it is often multifactorial so several thighs can add up to the ‘whole’ level you have to deal with.

Unravelling and unpicking the personal aspects of it can reduce its intensity and make it more manageable, so it is still worth looking at all the personal possible items adding to your own personal burden eg I now have a lot of reflux and heartburn but wouldn’t risk taking eg omeprazole.

There can still be some things which if altered might make our RLS more bearable & eg change from severe to moderate - not found mine though sadly

[lhammy66 in reply to Hidden]

Yes an interesting challenge. I need reflux support as my voice box was being compromised from acid reflux and teaching and working in academia more generally is difficult with an unreliable voice! Another of those catch 22 situations! The interesting challenges of life!

[Hidden in reply to lhammy66]

Which we could definitely do without!

[Jelbea in reply to Hidden]

Dear Alison7 - I know your post was for hammy but I feel is very appropriate for me also.I was so interested to hear your husband was a haematologist. The team who are looking after my care are composed of four senior haematologists and although each patient is assigned to one particular person the team have frequent group meetings so that your treatment is discussed by all the brains there! I think this is great and I feel that I will get the best possible advice. I met my new GP this morning and she made me feel that she will be very supportive which will be a great change for me.

I hope you are well at present.

[Hidden in reply to Jelbea]

I am pleased to know you are receiving good care. Certainly the system you describe of using several brains to decide things is something which I understand is pretty standard now in the care of what you have.The folk on our RLS site are used to passing on gems & ideas to each other as no one seems to have got there as regards RLS & we’re still needing lots of education and research but for blood disorders, though treatments etc may change & evolve we can be confident that experts & their teams are doing the care.

Bear wishes

[Munroist]

Not sure if it's any help but one non medical approach to easing RLS for me is moderate daily exercise. It's not a cure but if I don't do it I am a lot more restless at night. In the absence of useful medication little things might make a difference. All the best.

[lhammy66 in reply to Munroist]

Thank you. I found also that too much exercise makes it worse so I'm trying to get to the right level of gentle exercise earlier in the day as night exercise seems to leave my legs 'wired'- ha. Thanks

[Munroist in reply to lhammy66]

Yes, I find about an hour of steady walking is about right, 2-3 miles, with some hills for exercise. If I go too intense or fast then it makes things more restless. I still cycle and hill walk but I apply the same principles i.e. dial back the effort to 80%, pace yourself and keep it steady. And I enjoy it more.

[lhammy66 in reply to Munroist]

Sounds good advice to me